importance of qualitative research to education

Article contents

Critical qualitative research and educational policy.

• Madeline Good Madeline Good University of Missouri
•  and  Sarah Diem Sarah Diem Department of Educational Leadership & Policy Analysis, University of Missouri
• https://doi.org/10.1093/acrefore/9780190264093.013.1923
• Published online: 20 September 2023

Critical qualitative research is full of possibilities and explorations that can assist in transforming systems for social change and the public good. It is an approach to research that at its core is concerned with the role of power; how it manifests in systems, structures, policies, and practice; and how contexts can contribute to and reify power and its deleterious effects. The use of critical qualitative methods and methodologies within the field of education has grown significantly since the 1990s. This is a large area of work that encompasses studies throughout the spectrum of educational topics, from early childhood learning to higher education and beyond. In the area of educational policy, while scholars use a multitude of critical qualitative methodologies and methods, critical policy analysis (CPA) has continued to grow in popularity. CPA provides opportunities for researchers to question policy in general––how it is formed, implemented, and evaluated, as well as its assumed impact. It is appealing because it gives space for scholars to not only critique educational policy issues but also offer new perspectives, approaches, and alternatives to the policy process. Critical inquiry, however, does not occur within a vacuum, so the dynamics of conducting critical qualitative research within a hyperpolarized sociopolitical context must also be considered. Contentious times make it increasingly important for critical qualitative scholars to (re)commit to the work of transforming education with the goal of creating a more just society. There are a multitude of hopes and opportunities for this burgeoning area of critical research, challenging us all to not only look toward creative approaches when studying issues of educational policy but also to persistently interrogate how our own positionalities and relations impact the work we do.

• critical policy analysis
• critical theory
• critical qualitative research
• educational policy
• qualitative research

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Qualitative Research on Science Education in Schools

• First Online: 12 January 2022

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• Michaela Vogt 4 &
• Katja N. Andersen 5  

Part of the book series: Challenges in Physics Education ((CPE))

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Specific features in the three steps of theoretical framing, data collection and data analysis characterise qualitative research on science education. As a general tendency, the qualitative paradigm contributes to research results that are gained by the interpretation of non-numerical data collected through a rather open, not hypothesis-driven, process-like research (Bortz and Döring in Research methods and evaluation: for human and social scientists. Springer Medizin, Heidelberg, 2016 ; Lamnek and Krell in Qualitative social research: With online material. Beltz, Weinheim, 2016 ). Beyond this pragmatic shortcut to the paradigmatic perspective, it should be emphasised that the following contribution is based on a fundamental understanding of qualitative research in the sense of a multidimensional modular system. The individual components of this system can be used and combined flexibly. However, this must happen based on the solid foundation of theory and the principled orientation towards the object of research or research questions. This contribution presents and discusses current trends in qualitative research on science education in schools. The chapter focusses on the four steps (a) theoretical groundwork for a research project in didactics, (b) data collection implying sampling, methods and technical support, (c) data analysis with its diverse methods and criteria of quality and (d) the interpretation of the analysed data related to the theoretical framework as well as to the research field.

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Altenburger P, Starauschek E (2012) Physikalische Themen im Sachunterricht Baden-Württembergs in den Jahrgangsstufen 3 und 4 [Physics topics in Baden-Württemberg’s science education in grades 3 and 4]. In: Giest H, Heran-Dörr E, Archie C (eds) Lernen und Lehren im Sachunterricht: Zum Verhältnis von Konstruktion und Instruktion [Learning and teaching in the classroom: on the relationship between construction and instruction], Bd. 22. Klinkhardt, Bad Heilbrunn, pp 71–78

Google Scholar  

Azevedo FS (2018) An inquiry into the structure of situational interests. Sci Educ 102:108–127

Article   Google Scholar  

Bazeley P, Jackson K (2015) Qualitative data analyses with NVivo. Qual Res Psychol 12(4):492–494

Becker-Lenz R, Franzmann A, Jansen A, Jung M (eds) (2016) Die Methodenschule der objektiven Hermeneutik: Eine Bestandsaufnahme [The methodological school of objective hermeneutics: an inventory]. Springer VS, Wiesbaden

Berger P, Luckmann P (1966) The social construction of reality. Doubleday, New York

Bhaskar R (2008) A realist theory of science. Routlegde, London

Biester W (1991) Zeichnen als Hilfe zum Verstehen im Sachunterricht der Grundschule [Drawing as an aid to comprehension in primary science education]. In: Lauterbach R, Köhnlein W, Spreckelsen K, Bauer H (eds) Wie Kinder erkennen. Probleme und Perspektiven des Sachunterrichts [As children recognise. Problems and perspectives of science education], Bd. 1. IPN, Kiel, pp 82–97

Blumer H (1969) Symbolic interactionism: perspective and method. Englewood Cliffs, New Jersey

Bohnsack R (2001) Dokumentarische Methode: Theorie und Praxis wissenssoziologischer Interpretation [Documentary method: theory and practice of sociological interpretation of knowledge]. In: Hug T (eds) Wie kommt Wissenschaft zu Wissen? Einführung in die Methodologie der Sozial- und Kulturwissenschaften [How does science come to knowledge? Introduction to the methodology of social and cultural sciences], Bd. 3. Schneider, Baltmannsweiler, pp 326–345

Bohnsack R (2008) The interpretation of pictures and the documentary method. Forum Qual Soc Res 9(3):Art. 26

Bohnsack R (2013) Typenbildung, Generalisierung und komparative Analyse: Grundprinzipien der dokumentarischen Methode [Type formation, generalisation and comparative analysis: basic principles of the documentary method]. In: Bohnsack R, Nentwig-Gesemann I, Nohl A-M (eds) Die dokumentarische Methode und ihre Forschungspraxis: Grundlagen qualitativer Sozialforschung [The documentary method and its research practice: the foundations of qualitative social research], 3rd edn. VS-Verlag, Wiesbaden, pp 241–270

Chapter   Google Scholar  

Bohnsack R, Pfaff N, Weller W (eds) (2008) Qualitative analysis and documentary method in international educational research. Barbara Budrich, Opladen & Farmington Hills

Bortz J, Döring N (2016) Forschungsmethoden und Evaluation: Für Human- und Sozialwissenschaftler [Research methods and evaluation: for human and social scientists], 5th edn. Springer Medizin, Heidelberg

Brinton LJ (2001) Historical discourse analysis. In: Schiffrin D, Tannen D, Hamilton HE (eds) The handbook of discourse analysis. Blackwell, Malden, pp 138–160

Brown BA, Spang E (2008) Double talk: synthesizing everyday and science language in the classroom. Sci Educ 92:708–732

Carrier M (2004) Theoriesprache [Theoretical language]. In: Mittelstraß J (ed) Enzyklopädie Philosophie und Wissenschaftstheorie [Encyclopedia of philosophy and theory of science], Bd. 4: Sp-Z. J.B. Metzler, Stuttgart, pp 283–289

Carrington PJ, Scott J, Wasserman S (2005) Models and methods in social network analysis (Structural analysis in the social sciences book 28). Cambridge University Press, Cambridge

Cech D, Giest H (2005) Sachunterricht in Praxis und Forschung: Erwartungen an die Didaktik des Sachunterrichts [Science education in practice and research: expectations on the didactics of science education], Bd. 15. Klinkhardt, Bad Heilbrunn

Chambers JM (2008) Human/nature discourse in environmental science education resources. Can J Environ Educ 13(1):107–121

Cho JY, Lee E-H (2014) Reducing confusion about grounded theory and qualitative content analysis: similarities and differences. Qual Rep 19(64):1–20

Corbin J, Strauss AL (2015) Basics of qualitative research: techniques and procedures for developing grounded theory, 4th edn. Sage, Los Angeles

Coryn CLS, Schröter DC, McCowen RH (2014) A mixed methods study of some of the factors associated with successful school strategies for native Hawaiian students in the State of Hawaii. J Mixed Methods Res 8(4):377–395

Dennis SR (2018) Applied educational neuroscience in elementary classrooms: a grounded theory study. Doctoral thesis, submitted to the Faculty of the University Graduate School. Indiana University

Diekmann A (2018) Empirische Sozialforschung: Grundlagen, Methoden, Anwendungen [Empirical social research: principles, methods, applications], 12th edn. Rowohlt Verlag, Reinbek b. Hamburg

Dunker NK (2016) Überzeugungen von Sachunterrichtslehrkräften zum Experimentieren im Unterricht [Convincing science education teachers to experiment in the classroom]. In: Giest H, Goll T, Hartinger A (eds) Probleme und Perspektiven des Sachunterrichts: Sachunterricht zwischen Kompetenzorientierung, Persönlichkeitsentwicklung, Lebenswelt und Fachbezug [Problems and perspectives of science education: science education between competence orientation, personality development, life world and subject reference]. Klinkhardt, Bad Heilbrunn, pp 107–115

Feierabend T, Eilks I (2011) Innovating science teaching by participatory action research: reflections from an interdisciplinary project of curriculum innovation on teaching about climate change. Center Educ Policy Stud J 1(1):93112

Flick U (2016) Qualitative Sozialforschung: Eine Einführung [Qualitative social research: an introduction], 7th edn. Rowohlt, Reinbek b. Hamburg

Flick U, von Kardorff E, Steinke I (eds) (2004) A companion to qualitative research. Sage, London

Foucault M (1989) The order of things: an archaeology of the human sciences. Routledge, London

Friese S (2018) Atlas.ti 7: user guide and reference. ATLAS.ti Scientific Software Development GmbH, Berlin

Garfinkel H (1991) Studies in ethnomethodology. Polity, Cambridge

Garz D (1997) Qualitative Forschungsmethoden für die Sachunterrichtsdidaktik [Qualitative research methods for the didactics of subject teaching]. In: Marquardt-Mau B, Köhnlein W, Lauterbach R (eds) Forschung zum Sachunterricht: Probleme und Perspektiven des Sachunterrichts [Research on subject teaching: problems and perspectives of subject teaching], vol 7. Klinkhardt, Bad Heilbrunn, pp 43–60

Glaser BG (1996) Theoretical sensitivity. Advances in the methodology of grounded theory. Sociology Press, Mill Valley

Glaser BG (2005) The grounded theory perspective III: theoretical coding. Sociology Press, Mill Valley

Glaser BG, Strauss AL (2017) The discovery of grounded theory: strategies for qualitative research. Routledge, London

Book   Google Scholar  

Grygier P (2008) Wissenschaftsverständnis von Grundschülern im Sachunterricht [Understanding of science by primary schoolchildren in the classroom]. Klinkhardt, Bad Heilbrunn

Günther J, Grygier P, Kircher E, Sodian B, Thoermer B (2004) Studien zum Wissenschaftsverständnis von Grundschullehrkräften [Studies on the understanding of science by primary school teachers]. In: Doll J, Prenzel M (eds) Bildungsqualität von Schule: Lehrerprofessionalisierung, Unterrichtsentwicklung und Schülerförderung als Strategien der Qualitätsverbesserung [Educational quality of schools: teacher professionalisation, classroom development and student support as strategies for quality improvement]. Waxmann, Münster, pp 93–113

Harris R (2005) The semantics of science. A&C Black, London

Hempel M (2008) Zum (Vor)Wissen von Wissenschaft bei Grundschulkindern [On (pre-)knowledge of science in primary schoolchildren]. In: Giest H, Wiesemann J (eds) Kind und Wissenschaft [Child and science]. Klinkhardt, Bad Heilbrunn, pp 83–95

James A, James AL (2012) Key concepts in childhood studies, 2nd edn. Sage, London

John SW, Johnson P (2000) The pros and cons of data analysis software: a review. J Nurs Sch 32(4):393–397

Kaiser A, Dreber I (2010) Empirische Effizienzüberprüfung eines Kindergartenprojektes zum elementaren naturwissenschaftlich-technischen Lernen [Empirical efficiency review of a kindergarten project for elementary scientific and technical learning]. In: Fischer H-J, Gansen P, Michalik K (eds) Sachunterricht und frühe Bildung: Forschungen zur Didaktik des Sachunterrichts [Subject teaching and early education: research on the didactics of subject teaching], Bd. 9. Klinkhardt, Bad Heilbrunn, pp 81–92

Kaiser L, Schönknecht G (2016) Lernhilfe oder Hindernis? Visualisierungen im Sachunterricht [Learning aid or obstacle? Visualisations in subject lessons]. In: Giest H, Goll T, Hartinger A (eds) Sachunterricht – zwischen Kompetenzorientierung, Persönlichkeitsentwicklung, Lebenswelt und Fachbezug [Science education—between competence orientation, personal development, life world and subject reference], Bd. 26. Klinkhardt, Bad Heilbrunn, pp 49–57

Kakkori L (2009) Hermeneutics and phenomenology problems when applying hermeneutic phenomenological method in educational qualitative research. Paideusis 18(2):19–27

Kleining G (1982) Umriss zu einer Methodologie qualitativer Sozialforschung [Outline of a methodology of qualitative social research]. Kölner Zeitschrift Für Soziologie Und Sozialpsychologie 34(2):224–253

Knoblauch H (2006) Videography. Focused ethnography and videoanalysis. In: Knoblauch H, Schnettler B, Raab J, Soeffner H-G (eds) Video analysis: methodology and methods—qualitative audiovisual data analysis in sociology. Peter Lang, Frankfurt a.M., pp 69–83

Kromrey H, Roose J, Strübing J (2016) Empirische Sozialforschung: Modelle und Methoden der standardisierten Datenerhebung und Datenauswertung [Empirical social research: models and methods of standardised data collection and data evaluation], 13th edn. UVK Verlagsgesellschaft, Konstanz

Kuckartz U (2014) Qualitative text analysis. Sage, London

Lamnek S, Krell C (2016) Qualitative Sozialforschung: Mit Online-Material [Qualitative social research: with online material], 6th edn. Beltz, Weinheim

Landwehr B (2002) Distanzen von Lehrkräften und Studierenden des Sachunterrichts zur Physik: Eine qualitativ-empirische Studie zu den Ursachen [Distances of teachers and students of subject teaching to physics: a qualitative-empirical study on the causes]. Logos, Berlin

Leavy P (2016) Essentials of transdisciplinary research: using problem-centered methodologies. Routledge, London

Lechte M-A (2008) Sinnesbezüge, Interesse und Physik: Eine empirische Untersuchung zum Erleben von Physik aus Sicht von Schülerinnen und Schülern. Studien zur Bildungsgangforschung [Sensory references, interest and physics: an empirical study of the experience of physics from the perspective of pupils. Studies on educational pathways], Bd. 23. Budrich, Opladen

Legewie H (1994) Globalauswertung [Global evaluation]. In: Böhm A, Mengel A, Muhr T (eds) Texte verstehen: Konzepte, Methoden, Werkzeuge [Understanding texts: concepts, methods, tools]. Universitätsverlag, Konstanz, pp 100–114

Lind G (1999) Der Physikunterricht an den deutschen Gymnasien vom Beginn des 18. Jahrhunderts bis zum Beginn des 20. Jahrhunderts [The physics lessons at German grammar schools from the beginning of the 18th century until the beginning of the 20th century]. In: Goodson IF, Hopmann S, Riquarts K (eds) Das Schulfach als Handlungsrahmen: Vergleichende Untersuchung zur Geschichte und Funktion der Schulfächer [The school subject as a framework for action: comparative study of the history and function of school subjects]. Böhlau, Köln, pp 109–150

Lueger M, Hoffmeyer-Zlotnik JHP (1994) Hermeneutic interpretation in qualitative research: between art and rules. In: Borg I, Mohler PP (eds) Trends and perspectives in empirical social research. de Gruyter, Berlin, pp 294–307

Luhmann N (2012) Introduction to systems theory. Wiley, Hoboken

Mannheim K (1982) Structures of thinking. Routledge & Kegan Paul, London

Matthews MR (1993) Constructivism and science education: some epistemological problems. J Sci Educ Technol 2:359–370

Mayring P (2014) Qualitative content analysis: theoretical foundation, basic procedures and software solution. Beltz, Klagenfurt

Mayring P (2016) Einführung in die qualitative Sozialforschung [Introduction to qualitative social research], 6th edn. Beltz, Weinheim

Menger J (2011) Das Modell der zirkulären Entfaltung von Denkwegen als Basis technischer Verstehensprozesse [The model of the circular unfolding of ways of thinking as a basis for technical understanding processes]. In: Giest H, Kaiser A, Schomaker C (eds) Sachunterricht: Auf dem Weg zur Inklusion [Science education: on the way to inclusion], Bd. 21. Klinkhardt, Bad Heilbrunn, pp 163–167

Nentwig-Gesemann I (2013) Die Typenbildung der dokumentarischen Methode [The type formation of the documentary method]. In: Bohnsack R, Nentwig-Gesemann I, Nohl A-M (eds) Die dokumentarische Methode und ihre Forschungspraxis: Grundlagen qualitativer Sozialforschung [The documentary method and its research practice: the foundations of qualitative social research], 3rd edn. VS-Verlag, Wiesbaden, pp 295–324

Popper KR (1998) Objektive Erkenntnis: Ein evolutionärer Entwurf [Objective knowledge: an evolutionary design], 4th edn. Hofmann und Campe, Hamburg

Porter T, Córdoba J (2009) Three views of systems theories and their implications for sustainability education. J Manag Educ 33(3):323–347

Reichertz J (2004a) Abduction, deduction and induction in qualitative research. In: Flick U, von Kardorff E, Steinke I (eds) A companion to qualitative research. Sage, London, pp 159–164

Reichertz J (2004b) Objective hermeneutics and hermeneutic sociology of knowledge. In: Flick U, von Kardorff E, Steinke I (eds) A companion to qualitative research. Sage, London, pp 290–295

Reinhoffer B (2000) Heimatkunde und Sachunterricht im Anfangsunterricht: Entwicklungen, Stellenwert, Tendenzen [Local history and science education in initial lessons: developments, significance, trends]. Klinkhardt, Bad Heilbrunn

Rosenthal G, Fischer-Rosenthal W (2004) Objective hermeneutics and hermeneutic sociology of knowledge. In: Flick U, von Kardorff E, Steinke I (eds) A companion to qualitative research. Sage, London, pp 259–265

Sauer M (1992) „Vom Nutzen des Gewitters“: Paradigmen elementarer naturkundlicher Unterweisung im 19. Jahrhundert [„The benefits of thunderstorms”: paradigms of elementary natural history instruction in the 19th century]. Neue Sammlung 32(1):134–153

Schick A (2000) Der Einfluss von Interesse und anderen selbstbezogenen Kognitionen auf Handlungen im Physikunterricht [The influence of interest and other self-related cognitions on actions in physics lessons]. Logos, Berlin

Schreier M (2012) Qualitative content analysis in practice. Sage, London

Schütze F (2005) Biography analysis on the empirical base of autobiographical narratives: how to analyse autobiographical narrative interviews? Curriculum development funded by the EU Leonardo da Vinci programme. http://www.zsm.ovgu.de/zsm_media/Das+Zentrum/Forschungsprojekte/INVITE/B2_1-p-140.pdf (21.04.2020)

Scott J (1990) A matter of record: documentary sources in social research. Polity, Cambridge

Scott J (2017) Social network analysis, 7th edn. Sage, London

Steinke I (2004) Quality criteria in qualitative research. In: Flick U, von Kardorff E, Steinke I (eds) A companion to qualitative research. Sage, London, pp 184–190

Strauss AL, Corbin J (eds) (1997) Grounded theory in practice. Sage, London

Tschamler H (1996) Wissenschaftstheorie: Eine Einführung für Pädagogen [Theory of science: an introduction for educators]. Klinkhardt, Bad Heilbrunn

Van Dijk TA (1993) Principles of critical discourse analysis. Discourse Soc 4(2):249–283

VERBI Software (2012) MAXQDA the art of data analysis: Einführung. http://www.maxqda.de/download/manuals/MAX11_intro_ger.pdf (24.04.2013)

Vogt H, Mogge S, Wolfram A (2011) „Oma hat Falten, ich nicht“: Konzepte von Grundschulkindern über das Altern des Menschen [“Grandma has wrinkles, I don‘t”: concepts of primary schoolchildren about ageing]. In: Heinzel F (ed) Generationenvermittlung in der Grundschule: Ende der Kindgemäßheit [Generational mediation in primary school: the end of child conformity]? Klinkhardt, Bad Heilbrunn, pp 223–238

Waddock S (2006) Leading corporate citizens: vision, values, value-added, 2nd edn. McGraw Hill, New York

Wagner K (2016a) Gelingensbedingungen des Einsatzes eines mobilen Lernarrangements zum Thema „Fliegen“ im Grundschulunterricht [Successful conditions for the use of a mobile learning arrangement on the subject of “flying” in primary school lessons]. In: Liebers K, Landwehr B, Reinhold S, Riegler S, Schmidt R (eds) Facetten grundschulpädagogischer und -didaktischer Forschung: Jahrbuch Grundschulforschung [Facets of research in primary education and didactics: yearbook Primary School Research], 20. Springer VS, Wiesbaden

Wagner K (2016b) Schulische Rahmenbedingungen aus der Sicht von Sachunterrichtslehrkräften: Ein empirischer Beitrag zur Identifikation von Gelingensbedingungen von Unterrichtsentwicklung [The school environment from the perspective of subject teachers: an empirical contribution to the identification of conditions for successful instruction development]. In: Giest H, Goll T, Hartinger A (eds) Sachunterricht – zwischen Kompetenzorientierung, Persönlichkeitsentwicklung, Lebenswelt und Fachbezug [Subject teaching: between competence orientation, personal development, life world and subject reference], Bd. 26. Klinkhardt, Bad Heilbrunn, pp 167–174

Wagner-Willi M (2006) On the multidimensional analysis of video-data: documentary interpretation of interaction in schools. In: Knoblauch H, Schnettler B, Raab J, Soeffner H-G (eds) Video analysis: methodology and methods–qualitative audiovisual data analysis in sociology. Peter Lang, Frankfurt a.M., pp 143–153

Wengraf T, Chamberlayne P (2006) Interviewing for life-histories, lived situations and personal experience: the biographic-narrative interpretive method (BNIM). London

Wodak R, Krzyzanowski M (eds) (2008) Qualitative discourse analysis in the social sciences. Red Globe Press, London

Zinn B (2008) Physik lernen, um Physik zu lehren: Eine Möglichkeit für interessanteren Physikunterricht. Studien zum Physik- und Chemielernen [Learning physics to teach physics: an opportunity for more interesting physics lessons—studies on physics and chemistry learning], Bd. 85. Logos, Kassel

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Acknowledgements

We would like to thank Philipp Mayring (Alpen-Adria Universität Klagenfurt, Austria) and Astrid Huber (Private Pädagogische Hochschule der Diözese Linz, Austria) for carefully and critically reviewing this chapter.

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Vogt, M., Andersen, K.N. (2021). Qualitative Research on Science Education in Schools. In: Fischer, H.E., Girwidz, R. (eds) Physics Education. Challenges in Physics Education. Springer, Cham. https://doi.org/10.1007/978-3-030-87391-2_17

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This accessible and practical book is a perfect quick guide for graduate researchers in education. Looking at the interdependence of teaching and research, the authors show that a critical and analytical exploration of policies and practices is a necessary part of what we mean by being a 'professional' in education.

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'This book successfully revives Lawrence Stenhouse's seminal work on the 'teacher-researcher' by showing the interconnectedness of teaching and research and stressing the key role of the practitioner-researcher. Its chapters provide comprehensive guidance for researchers at all levels on conducting small scale research in an ethical and reflexive way' -Professor Jerry Wellington, Sheffield

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Exploring medical and nursing students’ perceptions about a patient safety course: a qualitative study

• Farwa Ayub 1 ,
• Noreen Afzal 2 ,
• Wajid Ali 2 ,
• Fozia Asif 1 ,
• Syed Sabih ul Hassan 1 ,
• Ghazal Haque 1 ,
• Fasih Ali Ahmed 1 , 3 ,
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Educating health professionals on patient safety can potentially reduce healthcare-associated harm. Patient safety courses have been incorporated into medical and nursing curricula in many high-income countries and their impact has been demonstrated in the literature through objective assessments. This study aimed to explore student perceptions about a patient safety course to assess its influence on aspiring health professionals at a personal level as well as to explore differences in areas of focus between medical and nursing students.

A dedicated patient safety course was introduced for year III medical and year II and IV nursing students at the Aga Khan University (2021–2022). As part of a post-course assessment, 577 participating students (184 medical and 393 nursing) wrote reflections on the course, detailing its influence on them. These free-text responses were thematically analyzed using NVivo.

The findings revealed five major themes: acquired skills (clinical, interpersonal), understanding of medical errors (increased awareness, prevention and reduction, responding to errors), personal experiences with patient safety issues, impact of course (changed perceptions, professional integrity, need for similar sessions, importance of the topic) and course feedback (format, preparation for clinical years, suggestions). Students reported a lack of baseline awareness regarding the frequency and consequences of medical errors. After the course, medical students reported a perceptional shift in favor of systems thinking regarding error causality, and nursing students focused on human factors and error prevention. The interactive course format involving scenario-based learning was deemed beneficial in terms of increasing awareness, imparting relevant clinical and interpersonal skills, and changing perspectives on patient safety.

Conclusions

Student perspectives illustrate the benefits of an early introduction of dedicated courses in imparting patient safety education to aspiring health professionals. Students reported a lack of baseline awareness of essential patient safety concepts, highlighting gaps in the existing curricula. This study can help provide an impetus for incorporating patient safety as a core component in medical and nursing curricula nationally and across the region. Additionally, patient safety courses can be tailored to emphasize areas identified as gaps among each professional group, and interprofessional education can be employed for shared learning. The authors further recommend conducting longitudinal studies to assess the long-term impact of such courses.

Peer Review reports

Introduction

Unsafe patient care is one of the leading causes of death and disability worldwide. The percentage of patients subject to adverse events while receiving healthcare services is 10% in high income countries (HICs) and may reach up to 25% in low- or middle-income countries (LMICs) [ 1 ]. The United States’ (US) National Academy of Medicine’s (previously called the Institute of Medicine) reports ‘To Err is Human’ and ‘Crossing the Quality Chasm’ brought international attention to the patient safety problem, and the World Health Organization (WHO) has since developed a curriculum to support healthcare professionals’ education in this area [ 2 , 3 , 4 ]. Deficits in patient safety education in medical and nursing curricula have been highlighted previously [ 5 , 6 ], and the introduction of such training for medical students in the US has demonstrated improvements in knowledge and attitudes about patient safety [ 7 ]. Furthermore, such curricula have been seen to result in sustained improvement among students in skills such as error root cause analysis, accurate entry of safety reports and error disclosure to patients [ 8 ].

While in the developed world, regulatory bodies have been formed and healthcare providers are urged towards continuous improvement [ 9 ], patient safety in developing countries is affected by a lack of accountability, material context, staffing issues and inter-professional working relationships [ 10 ]. One of the most important gaps identified in these settings is poor safety culture [ 11 ]. An imbalance of power and existing hierarchies hinder effective teamwork and safe practices [ 10 ]. However, these gaps are amenable to interventions such as training [ 12 ].

Although online courses have been employed to deliver patient safety education worldwide [ 13 ], the incorporation of formal, in-person patient safety training in medical and nursing curricula is new to LMICs such as Pakistan. In a recent national study, the academic leadership of 88 medical schools across the country agreed on incorporation of patient safety in undergraduate teaching as one of the top three proposed reforms to the national curriculum [ 14 ]. Recently, a patient safety course was introduced at one of the largest academic medical centers (AMCs) in Pakistan, demonstrating gains in medical and nursing student knowledge and systems thinking skills [ 15 , 16 ]. While the safety culture of a healthcare setting is highly dependent on physicians and nurses and both groups should ideally have a similar understanding of safety concepts, nurses tend to have more knowledge of patient safety than physicians [ 17 ]. Nursing students likewise have a more positive attitude towards patient safety education than medical students [ 18 ]. We hope that having similar structured education can address these differences at an early stage of training. Hence, we aimed to conduct a qualitative assessment of the reflections of medical and nursing students on this novel course to assess what depth the course added to students’ understanding of patient safety concepts and gauge course influence on aspiring health professionals at a personal level. Our secondary aim was to explore possible differences in the receptivity of the course as well as the uptake of course content between medical and nursing students. Since there is limited data available from the region, we employed a descriptive exploratory design.

Study design, setting, and duration

This study employed a descriptive exploratory qualitative design and was conducted at the Aga Khan University (AKU) in Karachi, Pakistan. The Bachelor of Medicine and Bachelor of Surgery (MBBS) program for physicians at AKU encompasses two years of basic sciences preceding three years of clinical clerkships [ 19 , 20 ], while the Bachelor of Science in Nursing (BScN) program comprises two preclinical and two clinical clerkship years [ 21 , 22 ].

The same 4.5 day course on Quality and Patient Safety was conducted between March 2021 and April 2022 separately for five student groups– two groups of Year III MBBS, two groups of Year II BScN and one group of Year IV BScN students. The course was modeled after a patient safety course taught at the Johns Hopkins University School of Medicine [ 7 ] and adapted for the local context. It included lectures, group activities, interactive case study discussions, and hands-on skill development workshops on quality improvement and patient safety (Table  1 ). The speakers used locally relevant examples during the lectures and activities. The case studies used were obtained from public sources such as the Agency for Healthcare Research and Quality’s (AHRQ) website and newspaper articles, and included the case of Josie King’s death at the Johns Hopkins Hospital [ 23 , 24 ]. Details on the course curriculum have been published previously [ 15 ].

Data collection

Pre and postcourse assessments were conducted on the university Virtual Learning Environment (VLE) as part of the course. The posttest comprised various components, one of them being personal reflections. All students were given time to complete the assessment online on the last day of the course, and responses were saved automatically. This voluntary assessment provided a platform for students to share their views on the course in writing. Through consecutive sampling, all participants were asked to note their thoughts and brainstorm learning, and to explore how the course influenced them. They were informed about the open-ended nature of the assignment and that the reflection was only to receive a completion grade and encouraged to express themselves without hesitancy. To elicit focused information from the participants, probes developed by subject matter experts (Table  2 ) were also provided for consideration while writing. These were designed based on course objectives to assess impact through exploration of aspects such as opinions, feelings, thought processes and experiences which were not otherwise covered in the objective assessment.

Data analysis

All responses comprising text were included in the analysis, and blank responses excluded. Following deidentification of the dataset, Braun and Clark’s six-step method for thematic analysis was followed for data analysis [ 25 ]. Free-text responses to the online form for each student group were imported as transcripts and transferred to NVivo to facilitate sub-group analysis and obtain accurate code counts for comparison between groups. These were read multiple times by two researchers (NA and FA) for familiarization with the data. Through a combined inductive and deductive approach, the investigators independently coded the data, followed by a discussion to decide the final list of codes. This list was used to generate a codebook that was employed to code all transcripts. Themes and subthemes were derived by grouping similar codes, which were then named and paired with their representative quotations. Responses were further grouped by respondent type and code counts were tabulated to determine intergroup commonalities and differences.

Methodological rigor

Credibility of the findings was ensured through investigator triangulation whereby two research team members independently analyzed the data to eventually reach a consensus on code assignment and derivation of themes and subthemes, and data triangulation where perceptions of two groups of respondents (medical and nursing students) were obtained about the same course [ 26 ].

To reduce investigator bias, the two researchers held regular team meetings for a reflexive dialogue about how their individual perspectives and exposure impacted their understanding and interpretation of the data [ 27 ]. FA is a medical doctor and was familiar with the content taught to participants since she was directly involved in course administration, whereas NA is from a nonclinical background with expertise in qualitative research. The basis for interpretation of study findings was established during these meetings and discrepancies were resolved in an inclusive manner by mutual consensus. The study findings were reported in accordance with the Standards for Reporting Qualitative Research (SRQR) [ 28 ].

Ethical considerations

This study received an exemption from ethics approval by the Ethics Review Committee at the Aga Khan University (2021-5976-16957). Student participation in the survey was voluntary and subject to informed consent. All data were deidentified prior to analysis.

Out of a total of 641 enrolled students, 577 wrote free-text responses which were then used for analysis. Table  3 illustrates the demographic characteristics of the study participants.

A similar percentage of medical and nursing students (11.4% and 10.9% respectively) did not participate in this section of the survey. Among the 64 non-respondents, 44 (68.8%) were females and 20 (31.3%) were males. The ages of these students ranged from 19 to 27 years. 38 (59.4%) were residents of Sindh, 4 (6.3%) originated from Punjab, 14 (21.9%) from Khyber Pakhtunkhwa, 3 (4.7%) from Gilgit-Baltistan and 1 (1.6%) from outside Pakistan.

Table  4 shows the five major themes, further divided into subthemes and the codes used to derive themes. Representative quotations are listed in Table S1 .

Theme 1: skills acquired from the course

Clinical skills.

Participants mentioned the range of skills they learned during the course that were relevant to clinical practice, including infection prevention practices such as correctly donning and doffing Personal Protective Equipment (PPE), particularly due to the COVID-19 pandemic. This was highlighted by a higher proportion of nursing students as compared to medical students (Table  3 ). Learning the importance of medical documentation and its appropriate implementation was also mentioned.

“Donning and doffing of PPE is something every health care professional should know, and we learned that in this module which will be very helpful for the future.” (Year V, MBBS) . “We learned about the different forms of documentation and how to write nursing notes.” (Year IV, BScN) .

Interpersonal skills

Participants reported that they learned about tools for effective communication, teamwork and conflict management. They commented on understanding the importance of these areas in reducing the occurrence of medical errors and ensuring patient safety.

“I learned different tools like SBAR [Situation, Background, Assessment, Recommendation] and ALEEN [Anticipate, Listen, Empathize, Explain, Negotiate] which help in strengthening communication between nurses and prescribers.” (Year II, BScN) . “As the course progressed, I was able to analyze the importance of inter-professional collaboration to reduce medical errors.” (Year IV, BScN) . “…the sessions made me aware of the possible conflicts that could occur in the hospital area and gave me a guideline to solve such conflicts.” (Year II, BScN) .

Theme 2: understanding of medical errors

Increased awareness.

A key subtheme that emerged was the lack of awareness among students regarding medical errors. Most participants mentioned hearing about such errors for the first time during the course and were unaware of the incidence and potential consequences of such errors in clinical practice.

“Perhaps the most important thing that I personally found enlightening in this module was knowledge about the frequency of human medical errors. I was surprised to find out how often they occur, how easily they occur and how a lot of us have a careless attitude towards it.” (Year III, MBBS) . “In some examples I was totally shocked because I never thought a single small mistake can be so dangerous for a patient’s life.” (Year II, BScN) .

Prevention and reduction

Students also highlighted the need for preventing errors and how they learned ways to do so. They further suggested that employing error prevention strategies such as staff training, improving communication, conducting double checks and remaining vigilant could be helpful in this regard. This subtheme came up in a higher proportion of nursing student reflections (Table  3 ).

“As healthcare workers who literally have patients’ lives in our hands, it is essential that we try to commit zero errors and make a system that also decreases the probability of errors.” (Year III, MBBS) . “One of the best chunks was strategies to minimize medical errors along with our role to combat them.” (Year II, BScN) .

Responding to errors

Participants mentioned that the course taught them how to respond appropriately to situations involving medical errors. It made them realize the importance of reporting medical errors to authorities and of the disclosure of such events to patients and their families. They further reported that the course helped them become familiar with the official reporting system of the hospital and taught them ways to report errors, both to the management and patients.

“I also learned the different techniques to avoid having such errors and if God forbids it happens then how to confront the situation accordingly.” (Year II, BScN) . “I learned of the significance of reporting medical errors even when it seems unnecessary.” (Year III, MBBS) . “I learned a lot of ways how to monitor and report any medical error and how to disclose a medical error to the patient.” (Year IV, BScN) .

Theme 3: personal experiences with patient safety issues

During the course, participants were able to reflect on their personal experiences with patient safety issues and shared accounts of being impacted by medical errors. They mentioned how the course helped them to view these experiences in a different light, especially regarding their causes. Some students also managed to capture a system lens toward the causes of adverse events.

“I personally had experience with a medical error when my aunt was admitted for an eye infection and the doctor prescribed the wrong medication, which we found out was to be given to the next patient. As a result of that, my aunt reacted to it leading her to be admitted to the ICU. The doctor did not disclose this information to us for a long time and my aunt continued to develop complications which eventually led her to forming a brain hematoma. Had the doctor disclosed this information on time, the complications could have been avoided or reduced to the very least.” (Year III, MBBS) . “I lost one of my family members because of multiple errors that took place at different intervals of healthcare provision and I learned how the Swiss cheese model represented that.” (Year III, MBBS) .

Theme 4: impact of the course

New information and changed perceptions.

Participants reported how the course increased their knowledge and changed their perceptions about patient safety and the causes of medical errors. They realized that instead of pinning the blame on one person, a series of events within the system were responsible for causing errors, which should be identified to create a blame-free culture. This was highlighted by a higher proportion of medical students (Table  3 ).

“When I used to hear about medical errors, I would always assume it was due to staff incompetency or lack of care. The understanding now that most medical errors do not occur due to malicious behaviour but rather are a result of system defects is eye-opening.” (Year III, MBBS) .

Professional integrity: responsibility, vigilance, and increased confidence

Students mentioned how the case studies detailing medical errors and their consequences had evoked their empathy for patients. They felt a greater sense of responsibility and the need to be vigilant during patient care to avoid medical errors. They further reported how they were able to develop confidence in themselves through the course, to speak up and act to protect their patients’ safety. These perceptions were highlighted by a greater fraction of nursing students (Table  3 ).

“This week of learning has also provoked a feeling of empathy, as the courage and confidence to accept and report mistakes can arise only when we can understand the pain of the patient and care for them.” (Year III, MBBS) . “…we should deal with patients very cautiously because one minor mistake can have detrimental effects on people’s lives.” (Year IV, BScN) . “After this course, I am more confident that I can also play a role and put forward my suggestions for reducing medical errors in the future.” (Year II, BScN) .

Need for similar sessions

The students expressed that the existing component of patient safety in the undergraduate curriculum was inadequate. They opined that patient safety courses should be offered repeatedly to refresh their skills and knowledge. They further strongly recommended offering this course to all other healthcare professionals as well.

“Such courses and sessions should be held for all years, and we would really appreciate if we were to receive refresher sessions and mock drills in the near future.” (Year II, BScN) .

Importance of the topic

Students acknowledged the importance of quality and patient safety, not only to ensure the provision of high-quality healthcare to patients, but also to protect healthcare workers.

“It made me analyze the system and realize that patient safety is something that should be standardized and taught to all healthcare workers in order to reduce risk of injury and harm to both patients and healthcare workers.” (Year III, MBBS) . “ …over the course of the past week, I have learned about very important topics such as patient safety. It is crucial for doctors to have a know how about such topics before their professional career begins.” (Year III, MBBS) .

Theme 5: course feedback

Students reported positive feedback on the use of examples and case studies as a teaching strategy. They felt that it helped invoke critical thinking, analytical skills, and the application of relevant knowledge.

“The case-based exercises, with all the real scenarios mentioned opened my eyes about the multi-layered approach to problem solving.” (Year III, MBBS) .

Discussions on case studies from the US, including the one on Josie King’s death at Johns Hopkins Hospital, was a novel learning experience for the participants. It helped them realize that patient safety issues are not limited to the local context.

“The [learning from defects activity] case was surprising for me, as I didn’t expect such an error from Johns Hopkins. However, I learnt that errors in safety can occur anywhere and how important Learning from Defects is.” (Year III MBBS) .

Students also mentioned how group activities made the course more interactive and stimulated peer learning. In-person sessions were favored over the virtual format.

“The session was very interactive and engaging. Learning in groups and peers was very helpful, as it gave us an opportunity to share our thoughts.” (Year IV, BScN) .

Preparation for clinical years

Participants appreciated how the course prepared them to transition to clinical clerkships and adjust their expectations. They also commented that in the absence of such a course, they would have learned about medical errors only through trial and error.

“It is very ideal to place this module right before our clinical rotation. Now I know how to handle a patient and the dos and don’ts in a health care setting.” (Year III, MBBS) .

Suggestions

Students shared ideas on how to improve the course and suggested including more in-person sessions and hands-on training activities. They also mentioned that patient safety courses should be offered from the first year of their professional education.

“I think it would have been better to have more in-person and small group sessions as they help more in learning than lectures and large class formats.” (Year III, MBBS) . “Perhaps in the years to come this module can incorporate actual documentation practice as part of our observership with nurses…” (Year III, MBBS) . “As this course progressed, I realized that it should have been taught to us in the first year as basics.” (Year IV, BScN) .

Comparison of medical and nursing student reflections

Tabulating code counts by group helped identify differing and similar areas of focus between the cohorts. It was seen that twice the proportion of nursing compared to medical students commented on learning about infection prevention, communication skills and acquiring new information because of the course. A similarly higher proportion reported enjoying the activity-based sessions and suggested that more of such sessions should be held. Nursing students also reflected to a greater extent on the need to be careful and vigilant while providing care. A higher proportion of nursing students also reported that the course had resulted in them having increased confidence to voice safety concerns.

Double the percentage of medical as compared to nursing students remarked that the course had helped prepare them for their upcoming clinical rotations. About a six times higher proportion of medical students reported being surprised to learn about the high frequency of errors in medical practice. This group also reflected more on personal experiences with patient safety issues. Additionally, a more than three-fold higher proportion of medical students reported learning about systems thinking and adopting a blame free approach towards patient safety events.

A similar proportion of medical and nursing students reported a newfound awareness of the potentially drastic consequences of medical errors. Both groups commented on the importance of learning about patient safety to a similar extent. The effectiveness of use of examples in teaching was also similarly remarked upon by both medical and nursing students.

This study aimed to assess the perceptions of medical and nursing students about a patient safety course following its introduction at one of the largest AMCs in Pakistan. The course was received positively by both groups and the results demonstrated that the training gave students a better understanding of the various aspects of medical errors. A higher proportion of medical students reflected on systemic causes of errors, while nursing students appeared to focus on individual roles and error prevention strategies. Both groups expressed how impactful the course had been in helping them understand the importance of teamwork between all cadres of healthcare workers and improving their communication skills. Overall, students appreciated the interactive format and course content, and believed they helped them gain a deeper understanding of patient safety-related issues, taught them essential hard skills, and helped prepare them for clinical practice. These findings highlight the effectiveness and potential benefits of addressing the topic through such dedicated courses.

In concordance with previous literature, students reported having a lack of baseline knowledge and developing an increased understanding of medical errors after the course [ 29 , 30 ]. They appreciated learning what to do in case an error occurred, the importance of reporting and disclosure and local reporting procedures. In Pakistan, error reporting and disclosure have been low scoring domains on patient safety assessments among healthcare providers [ 31 ]. Possible causes of underreporting are lack of awareness and fear of consequences, and according to studies, increasing awareness of medical errors could lead to increased incident reporting among health professionals [ 32 ]. Therefore, it is anticipated that educating health professionals at an early stage in their education can address the issue of underreporting in the local context.

Although both groups were similarly surprised to learn about the possible consequences of medical errors, a higher proportion of medical students reflected on the high frequency of errors and multifactorial causality of adverse events in comparison to nursing students. As reported in previous studies, they demonstrated an understanding of latent errors and systemic causes of errors as a result of the course [ 33 ] which made them open toward adopting a blame-free approach. This was an important finding, as an assessment of baseline perceptions of patient safety in Hong Kong showed that medical students lack an understanding of nonphysician-based causes of errors [ 34 ]. On the other hand, a higher proportion of nursing students demonstrated an understanding of the concept of error preventability, with a large number discussing at length the possible error prevention strategies, along with infection prevention. They also emphasized the need to be cautious and vigilant during care delivery [ 35 ], as the course had made them aware that the stakes are high otherwise. This finding is similar to a previous study and an indication of focus on an individual level and not on the culture of safety or the system as a whole [ 36 ]. These differences in the distribution and types of subthemes elucidated in the reflections of the two groups after the same course could be explained by the current power dynamics in healthcare settings in LMICs. In such settings, leadership comprises mostly senior physicians, which could mean that other health professionals are more vulnerable to blame and punishment than physicians [ 37 ]. Additionally, they could be a result of different areas of focus in the core medical and nursing curricula. While the nursing curriculum places great emphasis on skill development, medical education has more of a biomedical focus [ 6 ]. These differences could be addressed by employing interprofessional education and team-based learning strategies so that both groups can learn from each other and develop a more balanced approach [ 38 , 39 ]. The course could also be tailored for each group to specifically address the gaps identified. It is worth noting, however, that gender differences were not accounted for in this study and further research might be warranted to assess any possible impact they might have on the uptake of patient safety concepts among course participants.

While highlighting the importance of teamwork and communication for ensuring patient safety, students appreciated learning the use of structured methods such as the ALEEN and SBAR tools to resolve conflicts and communicate effectively within the healthcare team. Such tools have been useful in reducing patient harm and improving interprofessional communication, a critical element in patient safety [ 40 , 41 , 42 ].

Historically, physicians tend not to recognize the importance of teamwork and collaboration as much as nurses [ 43 , 44 , 45 ], perhaps owing to the general perception of physician dominance and nurse subversion [ 46 ]. This is a barrier to forming a good nurse‒physician relationship, and this lack of interprofessional collaboration could result in a higher possibility of errors and omissions in patients’ care [ 47 ]. It was thus noteworthy that both medical and nursing students in this study demonstrated a similar understanding of the importance of teamwork after the course, which highlights the effectiveness of including this subtopic in patient safety training.

Similar to previous studies, students considered the use of personal stories of medical errors as an effective and engaging means of learning [ 35 , 48 ]. While studies report the impact of personal stories narrated by involved personnel themselves [ 48 ], students in this cohort were deeply impacted by the medical error case scenario from the Johns Hopkins Hospital, as they were shocked to learn that medical errors could also happen in the best of settings. Students felt that this case discussion made them realize the importance of formal patient safety training for all health professionals. In addition, they were able to reflect on their own experiences of encountering or observing patient safety events. Furthermore, in line with findings from previous studies, medical students reported finding the use of real-life examples to be helpful [ 49 ].

There has been debate about the best way to impart core patient safety concepts, and different formats have been employed globally [ 35 , 50 , 51 , 52 , 53 ]. While online courses appear feasible and have been shown to increase knowledge [ 13 ], the literature shows that these courses alone do not show long-term effects on attitudes towards patient safety, an area that needs to be addressed in patient safety education [ 54 , 55 ]. Students in our study expressed greater engagement in the in-person sessions than in the virtual sessions. The effectiveness of interactive activities was reported in terms of solidifying concepts and learning practical implementation and has been highlighted in the literature as well [ 50 ]. Holding in-person training sessions might be more important for nonmandatory areas of study to improve student engagement and ensure long-term impact.

We believe that by providing an increased understanding of the perceptions of end users, this study can help with designing and incorporating patient safety courses into medical and nursing curricula globally. The findings indicate that the said course increased students’ awareness, imparted skills and changed their perceptions and outlook towards patient safety. This is in line with the literature [ 56 ], supports the use of the format adopted, and can potentially lead to improved attitudes, a better safety culture and safer practices while also being a step towards achieving a similar understanding of patient safety among physicians and nurses.

To address safety issues in LMICs, patient safety can be incorporated as a core component in the national medical and nursing curricula early on in training. We suggest modifying the course content to address local gaps and employing interprofessional education and simulation-based training exercises to allow medical and nursing students to learn about shared responsibility and practice identifying and managing potential risks, errors, and adverse events in a safe and controlled environment. Clinical rotations during training could allow them to further observe and address patient safety issues firsthand, reinforcing their understanding and skills. We further recommend incorporating patient safety into continuing education programs for healthcare professionals through workshops, seminars, or online courses that provide updates on emerging patient safety practices and encourage ongoing professional development. Future research can be designed to measure long-term impact and outcomes, and to continuously assess and improve educational approaches. By implementing these recommendations, educational institutions can ensure that patient safety becomes an integral part of healthcare education, equipping future healthcare professionals with the knowledge, skills, and mindset needed to prioritize patient safety throughout their careers.

This study has a few limitations. Self-reported student reflections could be subject to self-reporting and social desirability bias. However, the relevant section of the survey was not graded and had no potential repercussions for the students, allowing them to freely express their opinions. The study was conducted at a single AMC, and students from other institutes in the region may have different exposures and perceptions regarding patient safety. It is worth noting that unlike most medical colleges across the country, AKU has a diverse student body with varying backgrounds and ethnicities from all over the country, which offered broad insight into student perceptions. Additionally, the COVID-19 pandemic led to variability between online and in-person delivery of lectures between cohorts. Finally, nursing students significantly outnumbered medical students, which could lead to a biased comparison.

Dedicated patient safety courses can lead to an improved conceptual understanding of patient safety among medical and nursing students. The reported lack of awareness regarding essential patient safety concepts prior to this course highlights a gap in the existing curricula in LMICs, and the student perspective demonstrates the benefits of addressing this gap through introduction of dedicated interactive courses at early stages of professional education. Similar courses could be implemented at the national level and regionally across medical and nursing schools to address local deficits, and the differing areas of focus of medical and nursing students after a similar training could be addressed by designing future interventions accordingly. Further research could be conducted to continually assess and improve these courses and measure their long-term impact on patient outcomes.

Data availability

The datasets used and analysed during the current study are available from the corresponding author on reasonable request.

Abbreviations

High-income countries

• Low- and middle-income countries

World Health Organization

United States

Academic medical center

Aga Khan University

Bachelor of Medicine and Bachelor of Surgery

Bachelor of Science in Nursing

Agency for Healthcare Research and Quality

Learning from Defects

Situation, Background, Assessment, Recommendation

Anticipate, Listen, Empathize, Explain, Negotiate

Virtual Learning Environment

Noreen Afzal

Standards for Reporting Qualitative Research

Personal Protective Equipment

Global Patient Safety Action. Plan 2021–2030 towards eliminating avoidable harm in Health Care. Geneva: World Health Organization; 2021.

Google Scholar  

Institute of Medicine Committee on Quality of Health Care in A. In: Kohn LT, Corrigan JM, Donaldson MS, editors. To Err is Human: Building a Safer Health System. Washington (DC): National Academies Press (US) Copyright 2000 by the National Academy of Sciences. All rights reserved.; 2000.

Institute of Medicine Committee on Quality of Health Care in A. Crossing the Quality Chasm: A New Health System for the 21st Century. Washington (DC): National Academies Press (US) Copyright 2001 by the National Academy of Sciences. All rights reserved.; 2001.

Walton M, Woodward H, Van Staalduinen S, Lemer C, Greaves F, Noble D, et al. The WHO patient safety curriculum guide for medical schools. Qual Saf Health Care. 2010;19(6):542–6.

Levett-Jones T, Andersen P, Bogossian F, Cooper S, Guinea S, Hopmans R, et al. A cross-sectional survey of nursing students’ patient safety knowledge. Nurse Educ Today. 2020;88:104372.

Article   Google Scholar  

Svitlica BB, Šajnović M, Simin D, Ivetić J, Milutinović D. Patient safety: knowledge and attitudes of medical and nursing students: cross-sectional study. Nurse Educ Pract. 2021;53:103089.

Aboumatar HJ, Thompson D, Wu A, Dawson P, Colbert J, Marsteller J, et al. Development and evaluation of a 3-day patient safety curriculum to advance knowledge, self-efficacy and system thinking among medical students. BMJ Qual Saf. 2012;21(5):416–22.

Madigosky WS, Headrick LA, Nelson K, Cox KR, Anderson T. Changing and sustaining medical students’ knowledge, skills, and attitudes about patient safety and medical fallibility. Acad Med. 2006;81(1):94–101.

Elmontsri M, Banarsee R, Majeed A. Improving patient safety in developing countries - moving towards an integrated approach. JRSM Open. 2018;9(11):2054270418786112.

Aveling EL, Kayonga Y, Nega A, Dixon-Woods M. Why is patient safety so hard in low-income countries? A qualitative study of healthcare workers’ views in two African hospitals. Global Health. 2015;11:6.

Yee D, Osuka H, Weiss J, Kriengkauykiat J, Kolwaite A, Johnson J et al. Identifying the priority infection prevention and control gaps contributing to neonatal healthcare-associated infections in low-and middle-income countries: results from a modified Delphi process. J Glob Health Rep. 2021;5.

Alsabri M, Boudi Z, Lauque D, Dias RD, Whelan JS, Östlundh L, et al. Impact of Teamwork and Communication Training interventions on Safety Culture and Patient Safety in Emergency departments: a systematic review. J Patient Saf. 2022;18(1):e351–61.

Ortega J, Cometto MC, Zárate Grajales RA, Malvárez S, Cassiani S, Falconi C, et al. Distance learning and patient safety: Report and evaluation of an online patient safety course. Rev Panam Salud Publica. 2020;44:e33.

Bakhshi SK, Afzal N, Merchant AAH, Abdul Rahim K, Shaikh NQ, Noorali AA et al. Undergraduate Medical Education Curriculum reforms in Pakistan: a mixed methods study of Academic Leadership perspectives. Acad Med. 2024.

Ahmed FA, Asif F, Mubashir A, Aboumatar HJ, Hameed M, Haider A, et al. Incorporating Patient Safety and Quality into the Medical School Curriculum: an Assessment of Student gains. J Patient Saf. 2022;18(6):637–44.

Ahmed FA, Choudhary RA, Khan H, Ayub F, Hassan SSU, Munir T, et al. Incorporating Patient Safety and Quality Course into the nursing curriculum: an Assessment of Student gains. J Patient Saf. 2023;19(6):408–14.

Oliveira JLC, Silva SVD, Santos PRD, Matsuda LM, Tonini NS, Nicola AL. Patient safety: knowledge between multiprofessional residents. Einstein (Sao Paulo). 2017;15(1):50–7.

Nabilou B, Feizi A, Seyedin H. Patient safety in Medical Education: students’ perceptions, knowledge and attitudes. PLoS ONE. 2015;10(8):e0135610.

Commission PM. Pakistan Medical Commission Curriculum [ https://pmc.gov.pk/Documents/Examinations/Guidelines%20for%20Undergraduate%20Medical%20Education%20Curriculum%20(MBBS).pdf .

University AK. Aga Khan University MBBS Curriculum [ https://www.aku.edu/mcpk/undergraduate/Pages/mbbs.aspx .

Council PN. Pakistan Nursing Council Curriculum: Pakistan Nursing Council; [ https://www.pnc.org.pk/admin/uploaded/HEC%20BSN%204%20Year.pdf .

University AK. Aga Khan University BScN Curriculum [ https://www.aku.edu/sonampk/ugme/Pages/bscn.aspx .

PSNet WebM&M. Case Studies (Agency for Healthcare Research and Quality) [ https://psnet.ahrq.gov/webmm-case-studies .

Niedowski E. How medical errors took a little girl’s life. The Baltimore Sun. 2003.

Braun V, Clarke V. Using thematic analysis in psychology. Qualitative Res Psychol. 2006;3(2):77–101.

Santos KDS, Ribeiro MC, Queiroga DEU, Silva I, Ferreira SMS. The use of multiple triangulations as a validation strategy in a qualitative study. Cien Saude Colet. 2020;25(2):655–64.

Olmos-Vega FM, Stalmeijer RE, Varpio L, Kahlke R. A practical guide to reflexivity in qualitative research: AMEE Guide 149. Med Teach. 2022:1–11.

O’Brien BC, Harris IB, Beckman TJ, Reed DA, Cook DA. Standards for reporting qualitative research: a synthesis of recommendations. Acad Med. 2014;89(9):1245–51.

Paxton JH, Rubinfeld IS. Medical errors education for students of surgery: a pilot study revealing the need for action. J Surg Educ. 2009;66(1):20–4.

Alser M, Böttcher B, Alfaqawi M, Jlambo A, Abuzubaida W, Abu-El-Noor N. Undergraduate medical students’ attitudes towards medical errors and patient safety: a multi-center cross-sectional study in the Gaza Strip, Palestine. BMC Med Educ. 2020;20(1):447.

Jafree SR, Zakar R, Zakar MZ, Fischer F. Nurse perceptions of organizational culture and its association with the culture of error reporting: a case of public sector hospitals in Pakistan. BMC Health Serv Res. 2016;16:3.

Halperin O, Bronshtein O. The attitudes of nursing students and clinical instructors towards reporting irregular incidents in the medical clinic. Nurse Educ Pract. 2019;36:34–9.

Roh H, Park SJ, Kim T. Patient safety education to change medical students’ attitudes and sense of responsibility. Med Teach. 2015;37(10):908–14.

Leung GK, Patil NG. Patient safety in the undergraduate curriculum: medical students’ perception. Hong Kong Med J. 2010;16(2):101–5.

Kutaimy R, Zhang L, Blok D, Kelly R, Kovacevic N, Levoska M, et al. Integrating patient safety education into early medical education utilizing cadaver, sponges, and an inter-professional team. BMC Med Educ. 2018;18(1):215.

Yoshikawa JM, Sousa BECd, Peterlini MAS, Kusahara DM, Pedreira MLG, Avelar AFM. Compreensão De alunos de cursos de graduação em enfermagem e medicina sobre segurança do paciente. Acta Paul Enferm. 2013;26(1):21–9.

Hamdan M, Saleem AA. Assessment of patient safety culture in Palestinian public hospitals. Int J Qual Health Care. 2013;25(2):167–75.

Lochner L, Girardi S, Pavcovich A, Meier H, Mantovan F, Ausserhofer D. Applying interprofessional team-based learning in patient safety: a pilot evaluation study. BMC Med Educ. 2018;18(1):48.

Goolsarran N, Hamo CE, Lane S, Frawley S, Lu WH. Effectiveness of an interprofessional patient safety team-based learning simulation experience on healthcare professional trainees. BMC Med Educ. 2018;18(1):192.

Oliveira AL, Brown M. SBAR as a standardized Communication Tool for Medical Laboratory Science Students. Lab Med. 2021;52(2):136–40.

De Meester K, Verspuy M, Monsieurs KG, Van Bogaert P. SBAR improves nurse-physician communication and reduces unexpected death: a pre and post intervention study. Resuscitation. 2013;84(9):1192–6.

Bittner-Fagan H, Davis J, Savoy M. Improving patient safety: improving communication. FP Essent. 2017;463:27–33.

Kaifi A, Tahir MA, Ibad A, Shahid J, Anwar M. Attitudes of nurses and physicians toward nurse-physician interprofessional collaboration in different hospitals of Islamabad-Rawalpindi Region of Pakistan. J Interprof Care. 2021;35(6):863–8.

Tang CJ, Chan SW, Zhou WT, Liaw SY. Collaboration between hospital physicians and nurses: an integrated literature review. Int Nurs Rev. 2013;60(3):291–302.

Zheng RM, Sim YF, Koh GC. Attitudes towards interprofessional collaboration among primary care physicians and nurses in Singapore. J Interprof Care. 2016;30(4):505–11.

Milutinović D, Lovrić R, Simin D. Interprofessional education and collaborative practice: psychometric analysis of the readiness for interprofessional learning scale in undergraduate Serbian healthcare student context. Nurse Educ Today. 2018;65:74–80.

Matziou V, Vlahioti E, Perdikaris P, Matziou T, Megapanou E, Petsios K. Physician and nursing perceptions concerning interprofessional communication and collaboration. J Interprof Care. 2014;28(6):526–33.

Cooper K, Hatfield E, Yeomans J. Animated stories of medical error as a means of teaching undergraduates patient safety: an evaluation study. Perspect Med Educ. 2019;8(2):118–22.

Teigland CL, Blasiak RC, Wilson LA, Hines RE, Meyerhoff KL, Viera AJ. Patient safety and quality improvement education: a cross-sectional study of medical students’ preferences and attitudes. BMC Med Educ. 2013;13:16.

Hayes AJ, Roberts P, Figgins A, Pool R, Reilly S, Roughley C, et al. Improving awareness of patient safety in a peer-led pilot educational programme for undergraduate medical students. Educ Health (Abingdon). 2014;27(2):213–6.

Maatman TC, Prigmore H, Williams JS, Fletcher KE. Patient safety superheroes in training: using a comic book to teach patient safety to residents. BMJ Qual Saf. 2019;28(11):934–8.

Nie Y, Li L, Duan Y, Chen P, Barraclough BH, Zhang M, et al. Patient safety education for undergraduate medical students: a systematic review. BMC Med Educ. 2011;11:33.

Ruiz Colón G, Evans K, Kanzawa M, Phadke A, Katznelson L, Shieh L. How many lives will you save? A mixed methods evaluation of a Novel, Online Game for Patient Safety and Quality Improvement Education. Am J Med Qual. 2023;38(6):306–13.

Gaupp R, Dinius J, Drazic I, Körner M. Long-term effects of an e-learning course on patient safety: a controlled longitudinal study with medical students. PLoS ONE. 2019;14(1):e0210947.

Park KH, Park KH, Kang Y, Kwon OY. The attitudes of Korean medical students toward patient safety. Korean J Med Educ. 2019;31(4):363–9.

Kirkman MA, Sevdalis N, Arora S, Baker P, Vincent C, Ahmed M. The outcomes of recent patient safety education interventions for trainee physicians and medical students: a systematic review. BMJ Open. 2015;5(5):e007705.

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F.A. and N.A. wrote the main manuscript text and analyzed the data. F.A. was involved in data acquisition and handling, prepared tables for the manuscript and coordinated contributions from the coauthors. N.A. developed the study methodology and provided software-related expertise. A.L. and F.As. put together the curriculum and surveys, and conceptualized and supervised the study. F.A.A., S.S.H., F.As., K.A., Z.T. and M.J. were involved in data acquisition. A.H.H. conceived the idea for this study. W.A. contributed to writing the first draft of the manuscript and G.H. made contributions to editing. A.H.H and H.J.A. conducted a thorough critical review of the manuscript. A.L. was responsible for study validation, overseeing the analysis and critical review of the manuscript. All authors reviewed and approved the final manuscript.

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Ayub, F., Afzal, N., Ali, W. et al. Exploring medical and nursing students’ perceptions about a patient safety course: a qualitative study. BMC Med Educ 24 , 452 (2024). https://doi.org/10.1186/s12909-024-05348-8

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Chemistry Education Research and Practice

Factors that influence general chemistry students’ decision making in study strategies.

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a Department of Chemistry, University of South Florida, Tampa, FL, USA E-mail: [email protected]

b Department of Mathematics and Science Education, Zonguldak Bülent Ecevit University, Kdz. Ereğli, 67300 Zonguldak, Turkey

This qualitative study delves into the intricate landscape of general chemistry students' study strategy decision-making processes, examining the guiding factors that shape their choices. Past work in chemistry education has shown that students’ study behaviors are dynamic in nature. Employing self-regulation theory, the study aims to provide a deeper understanding of how students decide to maintain or change their study behaviors. Semi-structured interviews were conducted to capture the study processes of nine students enrolled in first-semester general chemistry classroom. The results indicated these students’ study behavior decision-making process was either driven by metacognition or affect. Students who adopted metacognitive decision-making showed evidence of enactment of declarative, procedural, and conditional knowledge which could be influenced by either the nature of the content studied (content-driven), or the time-efficiency of the strategies employed (time-driven) during their self-regulation. On the contrary, students who adopted affective decision-making based their choices regarding their study behaviors on the emotional aspects and the value they attribute to the study strategies (intrinsic-value or instrumental-value driven). The findings of the study are foundational yet highlight the nuanced nature of changes and constancy within the study strategy decision-making process. This suggests a one-size-fits-all approach to improve student study behaviors may not yield fruitful outcomes and therefore, distinct methods should be devised to reach students with different decision-making processes.

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• Open access
• Published: 26 April 2024

Improving medication dispensing and counselling for patients with vision impairment: a qualitative study of pharmacist-reported barriers and facilitators

• Basma Y. Kentab 1 , 2 ,
• Heather E. Barry 1 ,
• Sinaa A. Al-Aqeel 2 &
• Carmel M. Hughes 1  

BMC Health Services Research volume  24 , Article number:  534 ( 2024 ) Cite this article

Metrics details

People with vision impairment encounter many difficulties when it comes to medicines use. However, evidence indicates that there are major gaps in pharmaceutical care service provision worldwide and limited research on interventions to optimise medication use for this patient population. The Theoretical Domains Framework (TDF) provides a method for theoretically understanding individuals’ behaviour and informing development of interventions. The aim of this research was to (a) identify the barriers and facilitators to the provision of medication dispensing and counselling services by pharmacists to patients with vision impairment, and (b) identify key TDF domains to be targeted in a future intervention.

Semi-structured interviews were conducted with pharmacists from different pharmacy practice settings/areas in Saudi Arabia. The 14-domain TDF was utilised as the theoretical lens through which pharmacists’ behaviours were examined. Interviews were conducted in Arabic or English, either face-to-face or over the telephone based on the participant’s preference. Following transcription, interviews conducted in Arabic were translated into English before analysis. Data analysis involved using the framework method and content analysis to identify important barriers and facilitators to the provision of dispensing and counselling services to those with vision impairment. Key TDF domains that could be targeted in a future intervention were then identified using a consensus-based approach.

Twenty-six pharmacists were interviewed . Pharmacists’ experience in pharmacy practice ranged from two to 28 years. A range of barriers and facilitators were highlighted as important in providing services to those with vision impairment. Eight domains were identified as ‘key domains’ including: ‘Knowledge’, ‘Skills’, ‘Beliefs about capabilities’, ‘Goals’, ‘Memory, attention, and decision processes’, ‘Environmental context and resources’, ‘Social influences’, and ‘Behavioural regulation’.

Conclusions

Barriers and facilitators identified by pharmacists will inform the development of an intervention to ensure its applicability to everyday practice. Future research will focus on the process of developing the proposed intervention through targeting key TDF domains to improve medication dispensing and counselling by pharmacists to patients with vision impairment.

Peer Review reports

Pharmacists are more accessible than other healthcare professionals [ 1 ] and are also typically the last healthcare professionals who interact with patients before they take their medicines. However, reports suggest that many gaps exist in the delivery of pharmaceutical services by pharmacists to visually impaired patients and that routine services to support this population may not be available [ 2 , 3 , 4 , 5 ]. For example, issues have been reported with identifying patients with vision impairment, reliance on caregivers and family members, difficulties in communication with these patients, and organisational barriers (e.g. time constraints, workload, lack of access to patients’ records) that affected the provision of pharmaceutical care [ 3 , 4 , 5 ]. The reasons why pharmaceutical services are not routinely provided by pharmacists as part of normal practice are under-researched. There is also a paucity of interventions delivered by pharmacists aiming to support medicines optimisation in this patient population [ 6 ].

Helping patients to ‘take their medicines correctly, improve outcomes related to medicines use, and improve medicines safety’ are some of the essential goals of medicines optimisation [ 7 ]. The initial engagement between pharmacists and patients typically occurs when prescriptions are dispensed, and counselling is provided. This should ideally support patients to take medications appropriately and ultimately optimise their medication use. The provision of accessible medicines information by pharmacists when dispensing and counselling to patients with vision impairment has been identified as one of the issues that warrants further research [ 3 , 4 , 5 , 8 ]. Other issues that require further attention include strategies to encourage disclosure or identification of vision impairment, the educational and training needs of pharmacists, and the development of effective interventions to support this patient population [ 3 , 4 , 8 ].

It is now recognised that to increase the likelihood of an intervention being effective, it is best practice to develop interventions systematically using the best available evidence and appropriate theory [ 9 ]. The use of theory helps with identifying the determinants (i.e. barriers and facilitators) of change that can then be targeted by an intervention [ 10 , 11 , 12 ]. While pharmacists’ views in relation to the provision of pharmaceutical services to patients with vision impairment have been explored in studies that have utilised quantitative [ 2 , 5 ] and qualitative [ 4 , 13 ] approaches, none of these relied on a theoretical underpinning to explain pharmacists’ behaviours and practices.

The Theoretical Domains Framework (TDF), which is an integrative theoretical framework, has provided a method for theoretically assessing professional and other health-related behaviours as a basis for intervention development [ 14 ]. The TDF comprises 128 theoretical constructs that were clustered in 12 domains [ 15 ] and was later refined to include 14 domains [ 16 ]. Being derived from 33 different behaviour and behaviour change theories [ 15 ], the wide-encompassing nature of the model makes it an appealing option to explore a wide range of determinants of behaviours. In addition, there has been extensive work around how TDF domains can be linked to BCTs and integrated into the development of behaviour change interventions [ 17 , 18 , 19 , 20 ]. Employing the TDF as the theoretical lens through which pharmacists’ behaviours are examined will aid in understanding the factors that influence the dispensing and counselling processes for visually impaired patients and provide the theoretical basis for designing an effective medicines optimisation intervention in this patient group.

The study reported here was part of a larger research project that took place in Saudi Arabia and aimed to develop an intervention to support the processes of dispensing and counselling for patients with vision impairment using the TDF as the theoretical framework. The project was developed in line with the United Kingdom’s (UK) Medical Research Council (MRC) guidance which advocates a systematic approach to developing interventions using the best available evidence and appropriate theory [ 9 , 21 ]. Theoretical understanding of a behaviour is an integral part of developing and implementing a successful intervention and can be achieved by examining existing evidence and theory and undertaking primary research such as interviews with stakeholders [ 21 ]. The specific objectives of the current study were as follows:

To utilise the TDF to identify the barriers and facilitators to medication dispensing and counselling from the viewpoint of pharmacists; and

To identify the key TDF domains to be targeted through an intervention.

The study adopted qualitative methodology through the use of semi-structured interviews. Since little is known about how pharmacists interact with visually impaired patients in Saudi Arabia, we needed a more in-depth understanding of real-life practices of pharmacists and whether there were differences between different pharmacy practice areas and settings. Knowing the long working hours of pharmacists and the range of settings in which they worked, it would have been extremely difficult to arrange focus groups and have pharmacists meet at an exact time and place. This made interviews a more realistic option to explore pharmacists’ experiences and views. This study is reported in line with the Consolidated criteria for reporting qualitative research (COREQ) checklist [ 22 ] (Additional file 1 ).

Sampling and recruitment strategy

Considering the unique Saudi health system [ 23 , 24 ] (Fig.  1 ), a purposive sampling technique was utilised to ensure the inclusion of pharmacists from different practice areas (hospital and community) and different settings in Saudi Arabia [e.g. governmental hospitals and private hospitals; Ministry of Health (MOH) and Ministry of Education hospitals and chain and independent community pharmacies]. This was combined with snowball sampling.

The Saudi healthcare system

Pharmacists with a minimum of one year’s experience working at a range of hospitals, or at independent/chain community pharmacies were eligible to participate in the study. Pharmacists had to be involved with performing dispensing and/or counselling to patients or with overseeing these processes, e.g. supervisors or managers.

Pharmacists were recruited through several approaches including an email through the Saudi Pharmaceutical Society (SPS), direct personal contact followed by an invitation letter sent to contact persons at the company headquarters of a number of Saudi Arabia's major chain community pharmacies, searching independent community pharmacy listings in the main districts of Riyadh city (East, West, South, North, Centre), and contacting pharmacy directors or personal contacts at target hospitals to identify pharmacists from practice areas that were found not to be represented in the sample after using the other approaches.

Eligible pharmacists were contacted by telephone to explain the research project and then sent an invitation letter and an information sheet via email or WhatsApp messages to provide further information. A follow-up call or email was made by the researcher one week later to ascertain the pharmacist’s interest in participating. If the pharmacist agreed to participate, a suitable time was arranged to conduct the interview. Recruitment and interviewing continued until theoretical saturation was reached, i.e. until no significant new concepts emerged from the analysis of the interviews.

Topic guide development and data collection

Semi-structured interviews were conducted using an interview guide (Additional file 2 ) that was constructed based on the 14-domain TDF 2 [ 16 ] and informed by similar medicines optimisation research [ 25 , 26 ]. There were structured questions to collect some background data as well as open-ended questions to explore each of the TDF domains. Additionally, prompts were incorporated to obtain additional information from participants as needed. Interviews began by providing definitions of vision impairment and medicines optimisation to help explain what they meant in the context of this study. The draft interview guide was piloted with three hospital outpatient pharmacists and minor changes in wording were made based on their feedback.

Pharmacist interviews were conducted either face-to-face at their place of work, or over the telephone based on the participant’s preference and/or location (i.e. inside/outside Riyadh city). Video conferencing was not widely utilised at the time of planning and conduct of this study. Telephone interviews were the best available option when face-to-face interviews could not be carried out. The researcher (BK), who is a native Arabic speaker and fluent in English, conducted all interviews in either English or Arabic (based on the preference of the participant). All interviews were recorded on a digital voice recorder and each interview was transcribed verbatim, with all identifiers removed and replaced with codes to differentiate between participants, e.g. CP01 (Community Pharmacist 1), or HP01 (Hospital Pharmacist 1). Interviews conducted in Arabic were translated into English by a professional translator. One full interview translation was reviewed by both BK and SA to ensure accuracy. BK reviewed all remaining translated transcripts for accuracy and any necessary corrections were made.

Data analysis

Analysis was carried out through two sequential stages:

Stage 1: Identifying barriers and facilitators to medicine dispensing and counselling

The framework method was used to deductively analyse the data through seven stages: transcription, familiarisation, coding, developing a working analytical framework, applying the analytical framework, charting data into the framework matrix and finally interpreting the data [ 27 ]. Initially, three transcripts were independently coded by both BK and another member of the research team. Coding was then discussed by the research team to compare and refine codes and agree on the final framework. BK subsequently carried out the coding of the remainder of the interviews. The data were managed using NVivo® 12 [ 28 ] before being imported into a Microsoft Excel spreadsheet to generate a framework matrix. The 14 TDF domains served as the coding labels [ 16 ]. Content analysis was also conducted to identify the barriers and facilitators of medicines dispensing and counselling within each TDF domain from the perspectives of pharmacists.

Stage 2: Identifying key TDF domains to be targeted by an intervention

This process was undertaken by judging the relevance/importance of domains using three criteria: relatively high frequency of specific themes; presence of conflicting themes; and evidence of strong themes that may affect the target behaviour [ 14 ]. The feasibility of targeting barriers and facilitators as part of a future intervention within the hospital/community pharmacy setting, available resources, and the project timeframe guided the identification of key TDF domains. Decisions were made using a consensus-based approach within the research team.

Participant characteristics

All pharmacists who were invited to participate agreed to be interviewed. Twenty-six pharmacists were interviewed between May 2019 and February 2020. Data saturation occurred at interview number 26 as no significant new data emerged at that point. Most interviews took place face-to-face at the pharmacist’s place of work ( n  = 19), while seven interviews were conducted over the telephone. Duration of interviews ranged from approximately 39 min to 140 min (median: 53, IQR: 28.5). The majority of pharmacists preferred to communicate in Arabic with technical phrases relevant to pharmacy expressed in English. Pharmacists’ experience in pharmacy practice ranged from two to 28 years (mean: 11.5, SD: 7.3). Most pharmacists worked in Riyadh city ( n  = 22), while three pharmacists worked in Jeddah (Western Province) and one pharmacist worked in Najran (Southern Province). Four pharmacists were working in the hospital outpatient pharmacies of two governmental hospitals that specialise in eye diseases. No pharmacists were interviewed from pharmacies in private hospital settings. Table 1 shows other demographic characteristics of participating pharmacists.

Identification of barriers and facilitators that influence medication dispensing and counselling to patients with vision impairment

Pharmacists identified many barriers and facilitators under each of the TDF domains. It was clear throughout the analytical process that domains overlapped, and many barriers and facilitators could be coded under more than one domain. For example, having the relevant knowledge and training was coded as a facilitator under the ‘Knowledge’ and ‘Skills’ domains as well as the ‘Beliefs about capabilities’ domain. Workforce shortage coded as a barrier under the ‘Environmental context and resources (ECR)’ domain was also identified as a barrier under the ‘Optimism’ domain.

The following is a summary of the important factors within each domain that were perceived to influence the provision of medication dispensing and counselling to visually impaired patients. An expanded version of the barriers and facilitators under each of the TDF domains, together with illustrative quotes can be found in Additional file 3 .

Domain: Knowledge

Pharmacists identified knowledge of the presence of vision impairment in the patient as an important facilitator and reported various methods for identifying patients when they presented to them. Methods ranged from noticing the appearance of the patients and how they behaved, recognising certain diagnoses and comorbidities, to patients showing ‘disability cards’ indicating they were visually impaired.

"Umm I mean this is the most important thing, to know that he has visual impairment." (CP06)

Pharmacists reported that patients did not usually disclose that they had vision impairment unless they required assistance such as needing the pharmacist to write in a bigger font or to prioritise them in delivery of services as was the case with the ‘disability card’. Some pharmacists avoided explicitly questioning patients about vision impairment because they felt it was sensitive information and they were concerned about embarrassing patients. Pharmacists also indicated that they had no way of knowing that the patient was visually impaired if the caregiver came to collect medications.

"No, no one mentions something like that. I don't think that he even likes disclosing it to someone. [...] So, I feel they don’t tell out of embarrassment, so I avoid stating it. I mean I deal with him based on what I see in front of me and that is it…or what I felt from him." (CP04)

All pharmacists were unaware of the availability of guidance or advice on how to provide services to patients with vision impairment, and none had received any type of education about the issue at pharmacy schools.

"I mean, it would be easier for me if there were a guideline." (HP05).

Domain: Skills

Pharmacists listed a wide range of skills they believed were important when providing medication dispensing and counselling to patients with vision impairment including patience, communication skills, counselling skills (e.g. listening, simplifying language, describing shapes of tablets) and problem-solving skills. Although none of the pharmacists reported receiving any training on the issue, they acknowledged the importance of future courses and training in order to improve their skills when interacting with visually impaired patients. Some pharmacists attributed the lack of training to the low number of visually impaired patients seen in their practice setting.

"I think communication is the most important thing. That you should not be, like, annoyed with the person in front of you, or appreciate his condition. So, you should be a little patient." (CP04) "…if you are in an institution, umm, where you probably see many patients, […] then in this case umm, ok, …there should be training, there should be… using all tools that might…that might help. But for…let’s say at [name of hospital where pharmacist is practising] where we don’t really deal with such patients [...] So we deal with it case by case. That’s why […] we never even thought about, to have any…any specific training for that." (HP06)

Domain: Social professional role and identity (SPRI)

Pharmacists had very strong beliefs about dispensing and counselling being their duty and responsibility towards patients, but some had concerns about the understanding of their roles by others, particularly patients/caregivers, physicians, and administrators [Domain: ‘Social influences’]. One pharmacist mentioned the professional boundaries between pharmacists and pharmacy technicians and how the quality of counselling might be compromised when provided by technicians.

"It is my responsibility that every patient, whether he has a special need or not, does not leave the pharmacy unless he has learned how to use the medication in a correct and effective way." (HP11) “...I don’t want to speak ill of them [technicians] , but they don’t have enough information or enough skills to deliver the medicine-related information to the patient." (HP04)

Domain: Beliefs about capabilities

The barriers and facilitators reported under this domain were predominantly linked to availability of environmental resources [Domain: ‘ECR’], having the appropriate knowledge and training [Domains: ‘Knowledge’, ‘Skills’], or factors related to patients/caregivers [Domain: ‘Social influences’].

"I feel confident when the patient himself has dealt with the drug more than once. So, I dispense it and be rest assured that he will not misuse it, especially if I repeat to him “take it in the morning”..." (HP09) "[...] The more the knowledge you have, I think…and you having received training in a professional manner, I think, the more eager you’d be to deliver what you’ve got to the person in front of you. I think this…I think this is the most influencing factor." (CP02)

Domain: Optimism

Pharmacists’ optimism regarding improvement in dispensing and counselling processes was largely linked to other domains particularly ‘ECR’, ‘Knowledge’ and ‘Skills’. Factors such as the availability of resources and having appropriate education and training were considered facilitators, while workforce shortage, associated costs, and lack of specific guidelines were identified as barriers.

“That so far, there are no official guidelines for this matter. […] We need to come up with guidelines for this matter, that everybody, like, adheres to." (CP06)

Domain: Beliefs about consequences

All pharmacists were well aware of the consequences of providing appropriate dispensing and counselling services such as improving therapeutic outcomes and patients’ quality of life in addition to enhancing patients’ trust in pharmacists as professionals. However, pharmacists acknowledged that the lack of methods to measure such consequences in practice was a barrier.

“The quality of his life will increase [...] the costs will decrease [...] the complications will decrease, he will not be readmitted to the hospital.” (HP01) "I cannot know that I made something better if I cannot measure it in the first place." (HP01)

Domain: Reinforcement

Workforce shortage and time constraints, which were noted as barriers under the ‘ECR’ domain were also identified as barriers that discouraged pharmacists from providing appropriate dispensing and counselling services. Maintaining the pharmacy profession reputation, presence of incentives such as appreciation by senior management, and having the appropriate tools to help visually impaired patients were identified as facilitators.

"...Workforce shortage would not let me sit with every patient and give him his time. So, you’ll find me sitting and trying to finish a number, I mean sitting and finishing umm let’s go, finish the first patient and the next one. Umm, I mean to the point that you’ll sometimes find that there is no counselling and sometimes…and sometimes unfortunately there is no pharmacy [practice]! [...] I mean you’d find me like, sorry for the description, you’d find me like a grocery worker!" (HP04)

Domain: Intentions

It was obvious that no specific services were routinely provided to visually impaired patients across all pharmacy practice settings in Saudi Arabia. Nevertheless, a number of pharmacists described some initiatives to provide such services. Two pharmacists reported attempts at providing label information in Braille at their hospital pharmacies, but both attempts were unsuccessful because of difficulties in obtaining a printer in one case, and the inability to verify the accuracy of printed information in the other. Another initiative involved using QR codes to facilitate access to medication information, but it was yet to be implemented at the time of the interviews. Another pharmacist reported the presence of a specific clinic at the hospital that was equipped with a specialised printer where visually impaired patients could ask for medication instructions to be printed in Braille.

"One time we started a project which was Braille […] So they brought it so that printing could be in Braille, but the project did not work because of some problems." (HP11)

Domain: Goals

Pharmacists considered providing appropriate dispensing and counselling services to visually impaired patients a priority because they considered such patients to be more prone to medication problems. However, when patients were seen less frequently in the pharmacist’s practice area and in the presence of time constraints, providing appropriate services became less of a priority.

"Yes! Prio...prio…priority, the highest level of priority. […] Why? Because this is a living example of people who may take medicine in a wrong way, who may have medication errors at a very high rate, at 200% not 100%...soo, high priority." (HP04) "For me, not a very high priority. Because I…I mean, these kind of patients do not come frequently to the pharmacy. That is it. So…this can be improved in hospitals, more of in institutions, I mean.…or the hospital pharmacy, it would of course be better in this regard. Of course they’d consider it a priority. But in a community pharmacy, that would be a little difficult because there are many community pharmacies and these kind of patients may not be that many considering the spread of pharmacies…" (CP03)

Domain: Memory, attention, and decision processes (MADP)

Many factors were identified as facilitators to help pharmacists recognise the needs of visually impaired patients and make appropriate decisions when providing dispensing and counselling services such as: a note about vision impairment in the medical chart, the patient presenting at the pharmacy in person, checking the prescription, and talking with the patient. Factors that prevented pharmacists from appropriately addressing patients’ needs under this domain included: patients not disclosing their vision impairment and pharmacists avoiding asking about it, workload, and focusing on the caregiver rather than the patient.

"As I am telling you, even when they…when he comes into the pharmacy, he never tells that he is visually impaired [...] and of course I never try to say like [...] “Oh, you have an impaired vision?” …he’d consider it like…an insult or something like that." (CP04) "I give all the directions. But we… for a patient with eye problems, I don’t focus closely because as I am telling you I trust that the caregiver will be the one giving him [the medication] ." (HP14)

Domain: Environmental context and resources (ECR)

This was the most frequently discussed domain by participants. Some of the barriers and facilitators cited under this domain were also noted in a number of other domains (e.g. ‘Reinforcement’, ‘Goals’, ‘MADP’, ‘Intentions’, ‘Optimism’, ‘Skills’, ‘Knowledge’, ‘Behavioural regulation’). Workload and time constraints were very commonly reported as barriers to medication dispensing and counselling across several domains. Lack of proper tools and resources, access to physicians, the pharmacy layout, and aspects relating to medications (e.g. similar appearance of medications, changing brands) were also considered barriers to provision of appropriate services. Having a guideline or a checklist to guide the dispensing and counselling processes was considered a potential facilitator.

"Also, providing aids, I mean if there were brochures or video clips or sound, sound clips so that he’d listen to sound clips in one way or other. If there is like…some pharmaceutical accessories like organisers…pill organisers and such..." (HP04) "I would try as much as possible if the packs were similar, two different medications with similar packs, I’d try to look for an alternative with a smaller pack for example…so that they are different in size." (CP03) "...When the pharmacist is providing counselling, there should be like a checklist available to help him with providing the counselling." (HP04)

Domain: Social influences

In the views of pharmacists, caregivers seemed to be important, were frequently referred to in relation to ‘Social influences’ and other domains such as ‘Beliefs about capabilities’ and ‘ECR’. Two pharmacists strongly believed in complete reliance on caregivers for medication management for patients with vision impairment. Patients, caregivers, physicians, and pharmacy colleagues were considered to be both barriers and facilitators depending on their behaviour towards pharmacists. Communication with physicians about prescription issues was an area where differences among pharmacy practice areas were marked. Clinical pharmacists, who typically work in close partnership with physicians in inpatient or outpatient hospital settings [ 24 ], reported excellent relationships, demonstrated by physicians ‘relying’ on them in relation to medication issues and accepting suggested changes to medication regimens. Hospital outpatient pharmacists reported easy access to physicians and frequent contact to suggest changes to prescriptions or to clarify information. In contrast, community pharmacists usually reported lack of access to physicians and the absence of means to contact them about prescriptions.

"I mean there are patients that you feel like they are very careful about themselves, you feel they have the willingness “Yes, tell me. Yes, I want to see…”and some would tell you like “Just finish. I’ll take the medication and leave. It is none of your business. Don’t...” I mean it depends on the attitude of the patient." (HP03) "It is very difficult, impossible to reach the doctor there [at governmental hospital] [...] even at private clinics it would be hard to reach him. He is with patients the whole time because of the short operation hours." (CP04) "Basically, even the [outpatient pharmacy] supervisor himself wants you to, like, finish patients faster… ‘ Don’t say…just finish quickly…don’t say…give a lot of information, just give the basics and finish’." (HP15)

Domain: Emotion

Pharmacists reported positive emotions that facilitated their provision of dispensing and counselling services, e.g. feeling satisfied/happy/proud with performing duties, and negative emotions that acted as barriers to provision of appropriate services, e.g. stress which might affect the quality of services and the feeling of increased responsibility which made one pharmacist wish that a supervisor would deal with visually impaired patients.

"Of course, I feel proud that I, umm was able to contribute to improving his condition, that he would be always safe taking his medicine." (CP06) "I feel like what I’ve been entrusted with has increased. You get it? That…it honestly is a responsibility. I mean you’d wish that these people, [...] like, to have the supervisor to deal with them, maybe especially the blind, or something like that. Because I don’t know, like sometimes you’d wish to relieve yourself of this responsibility. You get it? Sometimes, I mean you are just afraid." (HP03)

Domain: Behavioural regulation

Pharmacists reported a number of methods used to monitor the dispensing and counselling processes such as asking patients to repeat instructions, following-up with patients/caregivers to obtain their feedback, documenting actions, and looking at key performance indicators (KPIs). Pharmacists also highlighted that the lack of formal policies/procedures and methods to measure the effect of counselling were potential barriers.

"The ability to get the feedback, for example, of the patient or the patient family…that everything is ok and going ok or not? […] Certainly, at the next visit.” (CP03)

Identification of key TDF domains to be targeted by an intervention

Based on the data analysis described in Stage 1, all 14 TDF domains were considered relevant to the target behaviour of medication dispensing and counselling. Eight domains were identified as ‘key domains’ to be targeted by a future intervention. These were: ‘Knowledge’, ‘Skills’, ‘Beliefs about capabilities’, ‘Goals’, ‘MADP’, ‘ECR’, ‘Social influences’, and ‘Behavioural regulation’. Table 2 provides a summary of the importance of each of the 14 domains and justification for whether or not they were selected as key domains.

Interviews with pharmacists have highlighted various barriers and facilitators that influence how dispensing and counselling are offered. While the current study findings align with what little has been reported in the literature about factors affecting pharmacists’ services to visually impaired patients [ 3 , 4 , 5 , 13 ], they are strengthened by following the MRC guidance [ 9 ] through utilising the TDF to develop a deep theoretical understanding of the pharmacists’ behaviour. This helped in the identification of previously unreported barriers and facilitators related to issues such as: ‘Beliefs about capabilities’, ‘Reinforcement’, ‘Social influences’ and ‘Emotions’ which were found to influence pharmacists’ medication dispensing and counselling behaviour.

In a 2017 survey of 200 pharmacy staff across the UK, more than two-thirds of the respondents stated that while efforts were made to support visually impaired patients, no routine service was available [ 2 ]. The situation in Saudi Arabia seems to be quite similar where no specific services are routinely provided to visually impaired patients across all practice settings.

It was evident that the ‘Knowledge’ and ‘Skills’ domains both needed further enhancement and were identified as key targets for the future intervention. The lack of a consistent method to identify patients with vision impairment in everyday practice may result in overlooking these patients and failure to provide them with appropriate services. These findings are similar to what has been reported in the literature about these patients ‘hiding’ their impairment and not highlighting their needs [ 4 , 30 ]. Pharmacists in the current study frequently expressed the need for education and training on provision of services to visually impaired patients and that it may need to begin early on during college years. A study published in 2021 by Tang et al . [ 31 ] found that an educational intervention delivered to Year 2 pharmacy students at the University of Sydney in Australia resulted in significant improvements in eye health knowledge and overall perceptions about pharmacists’ roles in managing people with vision impairment.

Patients’ resistance to acknowledge pharmacists as an important part of the healthcare team and their beliefs that physicians are more knowledgeable and well-trained than pharmacists have been reported to influence patients’ perceptions [ 32 ]. Moreover, negative public perception towards pharmacists in Middle Eastern countries was noted in a number of studies included in a systematic review by El Hajj et al . [ 33 ] where participants had a low level of trust in information provided by pharmacists. Limited knowledge of pharmacists’ training by other professionals has been cited as one of the challenges of pharmacist-physician collaborations [ 34 ] and pharmacists have been encouraged to clarify their own clinical roles, establish trustworthiness, and seek positive interactions in order to develop connections with other clinicians [ 35 ].

As previously stated, ‘ECR’ was the most commonly discussed domain by participants. Features of the pharmacy layout noted as barriers under ‘ECR’, e.g. lack of privacy and noise levels have also been reported by Dagnachew et al . [ 13 ] in interviews with community pharmacists in Ethiopia and by Alhusein et al . [ 4 ] in interviews with community pharmacy personnel in Scotland. The frequent reference to workload and time constraints as barriers to medication dispensing and counselling across several domains is again consistent with the findings of Alhusein et al . [ 4 ], who identified these factors as barriers to provision of pharmaceutical services to people with sensory impairment and with other TDF-based studies focusing on pharmacists’ behaviour [ 25 , 26 ]. It is important to consider the time and amount of work required for a future intervention for it to be acceptable to pharmacists and easily embedded within everyday practice.

The importance of caregivers' involvement was evident throughout the interviews and reflected the findings of Lee and Lee [ 5 ] who indicated that approximately 60% of pharmacists provided counselling to the patient’s family or caretakers and attributed that to two possible issues: lack of basic understating of vision impairment and failure to recognise it in patients. The latter was also reflected under the domain of ‘Knowledge’ in the findings.

All 14 TDF domains were considered relevant since they were often coded during transcript analysis and the identified barriers and facilitators were thought to have a strong impact on how pharmacists dispense and counsel medications for visually impaired patients. The eight domains identified as ‘key domains’ were perceived as feasible targets for a future intervention within the proposed intervention setting (outpatient hospital pharmacies or community pharmacies) and the resources that were available. Six TDF domains were deemed less important to target in a future intervention for a number of reasons. For example, all pharmacists identified many positive consequences for appropriate dispensing and counselling and negative consequences associated with inappropriate dispensing and counselling. Hence, we did not feel that the ‘Beliefs about consequences’ domain needed to be further addressed through a future intervention. When it came to ‘Reinforcement’, no resources were available to offer monetary incentives. Offering continuing education hours (CMEs) to pharmacists was considered as an alternative because it was suggested by one of the participants during interviews. However, the process of assigning CMEs to educational activities in Saudi Arabia is a somewhat complicated and lengthy process that would have significantly affected the study timeframe. Therefore, it was decided not to include ‘Reinforcement’ as one of the key domains. Targeting ‘Emotions’ would have also affected the timeline because changes in emotion require long periods of time to occur.

Strengths and limitations

To the authors’ knowledge, this is the first study to utilise theoretical underpinning to explore pharmacists’ behaviours in relation to medication dispensing and counselling for patients with vision impairment. However, the qualitative nature of the study affects the transferability of the findings to the international pharmacist community. The study followed the systematic approach recommended by the earlier version of the UK’s MRC framework for developing interventions to improve health [ 9 ]. The guidance was updated in 2021 after this study had concluded [ 21 ]. Female pharmacists were under-represented in this study, constituting around 31% of the total sample. All nine community pharmacists in the sample were male. This reflects the fact that the number of males in the Saudi pharmacy workforce is more than four times higher than the number of females [ 36 ]. Moreover, female pharmacists were only recently allowed to work in community pharmacy practice settings [ 37 ]. The study included pharmacists from different practice areas and settings (e.g. hospital vs. community; outpatient hospital pharmacy vs. clinical pharmacy). While pharmacists from private hospital settings were not interviewed, it should be noted that the majority of outpatient pharmacists involved with dispensing and counselling within that setting, practise in what essentially is a community pharmacy located on or near the premises of a private hospital. Depending on their practice setting, pharmacists with limited experience may have had relatively little interaction with patients who have vision impairment.

Two types of triangulation were conducted: investigator triangulation (by having a number of transcripts independently double coded by two members of the research team), and environmental triangulation (by interviewing pharmacists from different practice settings and practice areas). This addressed the credibility and confirmability of the findings. To enhance transferability and authenticity, a ‘thick description’ was provided by detailing the different settings from which pharmacists were recruited, ensuring that quotes reflected the various facilitators/barriers expressed by pharmacists, and describing the reasoning underpinning the decisions that were made. The dependability and authenticity of the findings were increased by maintaining an audit trail of all data generated throughout the study such as audio recordings, transcripts, translations, and analysis, and by decisions being reached through consensus. Because recruitment and interviewing continued over a long period of time, it was not possible to carry out ‘member checking’, i.e. to ask participants to review transcripts or comment on the final results.

This study adopted a qualitative approach to develop an in-depth understanding of pharmacists’ dispensing and counselling behaviour for patients with vision impairment. Utilising the TDF as the theoretical lens, a number of barriers and facilitators have been identified, with eight domains considered important to target in a future intervention. Further research will focus on mapping key TDF domains identified through this study to BCTs using the mapping matrix developed by Michie et al . [ 17 ] and Cane et al . [ 20 ]. These BCTs which will then be incorporated into a proposed intervention to support the processes of medication dispensing and counselling to visually impaired patients.

Availability of data and materials

The data that supports the findings of this study are available on reasonable request from the corresponding author. The data are not publicly available due to them containing information that could compromise research participant privacy/consent.

Abbreviations

Continuing education hours

Consolidated criteria for reporting qualitative research

Community pharmacist

Environmental Context and Resources

Hospital pharmacist

Memory, attention, and decision processes

Ministry of Health

Medical Research Council

Saudi Pharmaceutical Society

Social/professional role and identity

Theoretical Domains Framework

United Kingdom

Tsuyuki RT, Beahm NP, Okada H, Al Hamarneh YN. Pharmacists as accessible primary health care providers: review of the evidence. Can Pharm J. 2018;151(1):4–5.

Article   Google Scholar  

Barnett N, Bushra A, Huddy H, Majekodumni F, Thomas S, Chiu F. How to support patients with sight loss in pharmacy. Pharm J. 2017;299(7904):1–8.

Google Scholar  

Alhusein N, Macaden L, Smith A, Stoddart KM, Taylor AJ, Killick K, Kroll T, Watson MC. “Has she seen me?”: A multiple methods study of the pharmaceutical care needs of older people with sensory impairment in Scotland. BMJ Open. 2018;8(8):e023198.

Article   PubMed   PubMed Central   Google Scholar  

Alhusein N, Killick K, Macaden L, Smith A, Stoddart K, Taylor A, Kroll T, Watson MC. “We’re really not ready for this”: a qualitative exploration of community pharmacy personnel’s perspectives on the pharmaceutical care of older people with sensory impairment. Disabil Health J. 2019;12(2):242–8.

Article   CAS   PubMed   PubMed Central   Google Scholar  

Lee BH, Lee YJ. Evaluation of medication use and pharmacy services for visually impaired persons: perspectives from both visually impaired and community pharmacists. Disabil Health J. 2019;12(1):79–86.

Article   PubMed   Google Scholar  

Kentab BY, Barry HE, Al-Aqeel SA, Hughes CM. A systematic review of pharmacists’ interventions to support medicines optimisation in patients with visual impairment. Int J Clin Pharm. 2019;41(6):1400–7.

Royal Pharmaceutical Society. Medicines optimisation: Helping patients to make the most of medicines. Good practice guidance for healthcare professionals in England. 2013. [ https://www.rpharms.com/Portals/0/RPS%20document%20library/Open%20access/Policy/helping-patients-make-the-most-of-their-medicines.pdf ]. Accessed 12 Jan. 2018.

Phongpunpisand P, Pumtong S, Sunantiwat M, Anuratphanich L. Designing hospital and pharmacy services for visually impaired persons in Bangkok, Thailand. Hosp Top. 2022;1–10. https://pubmed.ncbi.nlm.nih.gov/35998197/ .

Craig P, Dieppe P, Macintyre S, Michie S, Nazareth I, Petticrew M. Developing and evaluating complex interventions: The new medical research council guidance. BMJ. 2008;337:a1655.

Michie S, Abraham C. Interventions to change health behaviours: evidence-based or evidence-inspired? Psychol Health. 2004;19(1):29–49.

Rothman AJ. “Is there nothing more practical than a good theory?”: Why innovations and advances in health behavior change will arise if interventions are used to test and refine theory. Int J Behav Nutr Phys Act. 2004;1(1):11.

Michie S. Designing and implementing behaviour change interventions to improve population health. J Health Serv Res Policy. 2008;13(Suppl 3):64–9.

Dagnachew N, Meshesha SG, Mekonen ZT. A qualitative exploration of barriers in accessing community pharmacy services for persons with disability in Addis Ababa, Ethiopia: a cross sectional phenomenological study. BMC Health Serv Res. 2021;21(1):467.

Atkins L, Francis J, Islam R, O’Connor D, Patey A, Ivers N, Foy R, Duncan EM, Colquhoun H, Grimshaw JM, et al. A guide to using the theoretical domains framework of behaviour change to investigate implementation problems. Implement Sci. 2017;12(1):77.

Michie S, Johnston M, Abraham C, Lawton R, Parker D, Walker A. Making psychological theory useful for implementing evidence based practice: a consensus approach. Qual Saf Health Care. 2005;14(1):26–33.

Cane J, O’Connor D, Michie S. Validation of the theoretical domains framework for use in behaviour change and implementation research. Implement Sci. 2012;7:37.

Michie S, Johnston M, Francis J, Hardeman W, Eccles M. From theory to intervention: mapping theoretically derived behavioural determinants to behaviourchange techniques. Appl Psychol. 2008;57(4):660–80.

Michie S, Richardson M, Johnston M, Abraham C, Francis J, Hardeman W, Eccles MP, Cane J, Wood CE. The behavior change technique taxonomy (v1) of 93 hierarchically clustered techniques: building an international consensus for the reporting of behavior change interventions. Ann Behav Med. 2013;46(1):81–95.

Michie S, Atkins L, West R. The behaviour change wheel: A guide to designing interventions. Great Britain: Silverback Publishing; 2014.

Cane J, Richardson M, Johnston M, Ladha R, Michie S. From lists of behaviour change techniques (BCTs) to structured hierarchies: comparison of two methods of developing a hierarchy of BCTs. Br J Health Psychol. 2015;20(1):130–50.

Skivington K, Matthews L, Simpson SA, Craig P, Baird J, Blazeby JM, Boyd KA, Craig N, French DP, McIntosh E, et al. A new framework for developing and evaluating complex interventions: update of medical research council guidance. BMJ. 2021;374:n2061.

Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): A 32-item checklist for interviews and focus groups. Int J Qual Health Care. 2007;19(6):349–57.

Qutub AF, Al-Jewair TS, Leake JL. A comparative study of the health care systems of Canada and Saudi Arabia: Lessons and insights. Int Dent J. 2009;59(5):277–83.

PubMed   Google Scholar  

Almalki M, Fitzgerald G, Clark M. Health care system in Saudi Arabia: an overview. East Mediterr Health J. 2011;17(10):784–93.

Article   CAS   PubMed   Google Scholar  

Cadogan CA, Ryan C, Francis JJ, Gormley GJ, Passmore P, Kerse N, Hughes CM. Improving appropriate polypharmacy for older people in primary care: Selecting components of an evidence-based intervention to target prescribing and dispensing. Implement Sci. 2015;10:161.

Barry HE, Bedford LE, McGrattan M, Ryan C, Passmore AP, Robinson AL, Molloy GJ, Darcy CM, Buchanan H, Hughes CM. Improving medicines management for people with dementia in primary care: A qualitative study of healthcare professionals to develop a theory-informed intervention. BMC Health Serv Res. 2020;20(1):120.

Gale NK, Heath G, Cameron E, Rashid S, Redwood S. Using the framework method for the analysis of qualitative data in multi-disciplinary health research. BMC Med Res Methodol. 2013;13:117.

QSR International Pty Ltd. NVivo. Version 12. 2018. https://www.qsrinternational.com/nvivo-qualitative-data-analysis-software/home .

Badreldin HA, Alosaimy S, Aljedai A. Clinical pharmacy practice in Saudi Arabia: Historical evolution and future perspective. J Am Coll Clin Pharm. 2020;3(5):920–9.

Duckett PS, Pratt R. The researched opinions on research: Visually impaired people and visual impairment research. Disabil Soc. 2001;16(6):815–35.

Tang D, Dinh H, Almansour H, Burlutsky G, Bussing J, Eisenhauer B, Gopinath B, Flood VM, Saini B. Evaluation of educational interventions on eye health for dietetic and pharmacy professions: a pre-post study. BMC Med Educ. 2021;21(1):478.

Hindi AMK, Schafheutle EI, Jacobs S. Patient and public perspectives of community pharmacies in the United Kingdom: a systematic review. Health Expect. 2018;21(2):409–28.

El Hajj MS, Mekkawi R, Elkaffash R, Saleh R, El Awaisi A, Wilbur K. Public attitudes towards community pharmacy in Arabic speaking Middle Eastern countries: a systematic review. Res Social Adm Pharm. 2021;17(8):1373–95.

Hwang AY, Gums TH, Gums JG. The benefits of physician-pharmacist collaboration. J Fam Pract. 2017;66(12):e1–8.

Cromer J, Hojjat R, Peker S, Aprile J. Fostering the pharmacist-physician relationship. Am J Health Syst Pharm. 2009;66(2):118–9.

AlRuthia Y, Alsenaidy MA, Alrabiah HK, AlMuhaisen A, Alshehri M. The status of licensed pharmacy workforce in Saudi Arabia: A 2030 economic vision perspective. Hum Resour Health. 2018;16(1):28.

Balkhi B, Alghamdi A, Alhossan A, Alhamami A, Asiri YA. Pharmacy students attitude and perception toward working in community pharmacy in Saudi Arabia. Saudi Pharm J. 2020;28(4):397–402.

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Acknowledgements

The authors would like to thank all pharmacists who agreed to take part in the study. We would also like to express our gratitude to contact persons at hospital pharmacies, community pharmacies, and SPS who helped with the recruitment of participants.

At the time of the study, BK was a PhD candidate funded by the Saudi Arabian Cultural Bureau. The funder had no role in the design or conduct of the study; in the analysis and interpretation of the data; or in the preparation or approval of the manuscript.

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BK contributed to the design of the study, data collection, data analysis, and led the writing of the paper. HB and SA contributed to the design of the study, data analysis, review of results and review of the paper. CH led the development of the study design, contributed to data analysis, review of results and review of the paper. All authors read and approved the final manuscript.

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The study adhered to the standards outlined in the Declaration of Helsinki. The study was approved by the Institutional Review Boards (IRBs) of three institutions, King Saud University (Date: 30/01/2019; Reference No. 19/0090/IRB) and two MOH-affiliated hospitals (King Saud Medical City IRB; Date: 19/11/2019; Reference No. N/A), (King Khaled Eye Specialist Hospital IRB; Date: 01/01/2020; Reference No. RD/26001/IRB/0104–19). Written or electronic informed consent were obtained from all participants prior to commencing data collection.

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Additional file 1..

COREQ checklist. The 32-item Consolidated criteria for reporting qualitative research.

Additional file 2.

Pharmacists’ interview topic guide. TDF-based topic guide used during pharmacists’ interviews to explore barriers and facilitators to medication dispensing and counselling.

Additional file 3.

Expanded version of the barriers and facilitators identified under each of 14 TDF domains. A table with additional barriers and facilitators under each of the TDF domains together with illustrative quotes.

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Kentab, B.Y., Barry, H.E., Al-Aqeel, S.A. et al. Improving medication dispensing and counselling for patients with vision impairment: a qualitative study of pharmacist-reported barriers and facilitators. BMC Health Serv Res 24 , 534 (2024). https://doi.org/10.1186/s12913-024-11009-9

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Received : 28 August 2023

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DOI : https://doi.org/10.1186/s12913-024-11009-9

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ORIGINAL RESEARCH article

Assessing the effect of augmented reality (ar) on english language learning and student motivation in secondary education provisionally accepted.

• 1 Universidad Francisco de Vitoria, Spain
• 2 University of Alicante, Spain

The final, formatted version of the article will be published soon.

The integration of Augmented Reality (AR) in language learning has garnered attention in the field of education, yet its effectiveness in enhancing grammar proficiency among secondary school students remains relatively unexplored, especially given that previous research has predominantly focused on vocabulary acquisition at the primary and college levels. This study, based on a mixed-methods approach and convenience sampling, is aimed at assessing students' attitudes toward the integration of technology (H1) in language learning and examining the impact of using AR on grammar learning (H2) and motivation (H3) among secondary education students. Employing a mixed-method approach and convenience sampling, the research involved 130 students aged 14 to 15 from two secondary schools, divided into an experimental group (n=64) and a control group (n=66). Both groups received instruction on English comparative and superlative forms and completed a variety of exercises. The control group followed a traditional approach using a printed handbook, while the experimental group engaged with an AR-based lesson containing equivalent grammar activities and vocabulary in a multimedia format. Pre and post-tests were administered to evaluate grammar proficiency, accompanied by pre and post-surveys. Semi-structured discussion was used for the qualitative data. The findings revealed a strong interest in integrating AR technology into grammar learning, underscored by a positive attitude toward its implementation in secondary education. However, no statistically significant differences were detected in grammar learning performance between the two student groups. These findings emphasize the importance of providing proper teacher training in secondary education to effectively utilize AR technology and highlight the need for further research to explore its effectiveness and long-term impact. world environment to enhance the user's perception of reality. The prevalence of Software Development Kits (SDKs) such as ZapWorks, Roar, Augment, and ARkit Unity is steadily rising within various educational settings. These SDKs are employed to provide students with immersive experiences and enhance their performance, engagement, and motivation.

Keywords: augmented reality, language learning, grammar, Motivation, Secondary education

Received: 21 Dec 2023; Accepted: 25 Apr 2024.

Copyright: © 2024 Marrahi-Gomez and Belda-Medina. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY) . The use, distribution or reproduction in other forums is permitted, provided the original author(s) or licensor are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.

* Correspondence: Dr. Jose Belda-Medina, University of Alicante, Alicante, 03690, Valencian Community, Spain

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Qualitative Methods in Health Care Research

Vishnu renjith.

School of Nursing and Midwifery, Royal College of Surgeons Ireland - Bahrain (RCSI Bahrain), Al Sayh Muharraq Governorate, Bahrain

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1 Department of Mental Health Nursing, Manipal College of Nursing Manipal, Manipal Academy of Higher Education, Manipal, Karnataka, India

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2 Department of OBG Nursing, Manipal College of Nursing Manipal, Manipal Academy of Higher Education, Manipal, Karnataka, India

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3 School of Nursing, MGH Institute of Health Professions, Boston, USA

Anice George

4 Department of Child Health Nursing, Manipal College of Nursing Manipal, Manipal Academy of Higher Education, Manipal, Karnataka, India

Healthcare research is a systematic inquiry intended to generate robust evidence about important issues in the fields of medicine and healthcare. Qualitative research has ample possibilities within the arena of healthcare research. This article aims to inform healthcare professionals regarding qualitative research, its significance, and applicability in the field of healthcare. A wide variety of phenomena that cannot be explained using the quantitative approach can be explored and conveyed using a qualitative method. The major types of qualitative research designs are narrative research, phenomenological research, grounded theory research, ethnographic research, historical research, and case study research. The greatest strength of the qualitative research approach lies in the richness and depth of the healthcare exploration and description it makes. In health research, these methods are considered as the most humanistic and person-centered way of discovering and uncovering thoughts and actions of human beings.

Introduction

Healthcare research is a systematic inquiry intended to generate trustworthy evidence about issues in the field of medicine and healthcare. The three principal approaches to health research are the quantitative, the qualitative, and the mixed methods approach. The quantitative research method uses data, which are measures of values and counts and are often described using statistical methods which in turn aids the researcher to draw inferences. Qualitative research incorporates the recording, interpreting, and analyzing of non-numeric data with an attempt to uncover the deeper meanings of human experiences and behaviors. Mixed methods research, the third methodological approach, involves collection and analysis of both qualitative and quantitative information with an objective to solve different but related questions, or at times the same questions.[ 1 , 2 ]

In healthcare, qualitative research is widely used to understand patterns of health behaviors, describe lived experiences, develop behavioral theories, explore healthcare needs, and design interventions.[ 1 , 2 , 3 ] Because of its ample applications in healthcare, there has been a tremendous increase in the number of health research studies undertaken using qualitative methodology.[ 4 , 5 ] This article discusses qualitative research methods, their significance, and applicability in the arena of healthcare.

Qualitative Research

Diverse academic and non-academic disciplines utilize qualitative research as a method of inquiry to understand human behavior and experiences.[ 6 , 7 ] According to Munhall, “Qualitative research involves broadly stated questions about human experiences and realities, studied through sustained contact with the individual in their natural environments and producing rich, descriptive data that will help us to understand those individual's experiences.”[ 8 ]

Significance of Qualitative Research

The qualitative method of inquiry examines the 'how' and 'why' of decision making, rather than the 'when,' 'what,' and 'where.'[ 7 ] Unlike quantitative methods, the objective of qualitative inquiry is to explore, narrate, and explain the phenomena and make sense of the complex reality. Health interventions, explanatory health models, and medical-social theories could be developed as an outcome of qualitative research.[ 9 ] Understanding the richness and complexity of human behavior is the crux of qualitative research.

Differences between Quantitative and Qualitative Research

The quantitative and qualitative forms of inquiry vary based on their underlying objectives. They are in no way opposed to each other; instead, these two methods are like two sides of a coin. The critical differences between quantitative and qualitative research are summarized in Table 1 .[ 1 , 10 , 11 ]

Differences between quantitative and qualitative research

Qualitative Research Questions and Purpose Statements

Qualitative questions are exploratory and are open-ended. A well-formulated study question forms the basis for developing a protocol, guides the selection of design, and data collection methods. Qualitative research questions generally involve two parts, a central question and related subquestions. The central question is directed towards the primary phenomenon under study, whereas the subquestions explore the subareas of focus. It is advised not to have more than five to seven subquestions. A commonly used framework for designing a qualitative research question is the 'PCO framework' wherein, P stands for the population under study, C stands for the context of exploration, and O stands for the outcome/s of interest.[ 12 ] The PCO framework guides researchers in crafting a focused study question.

Example: In the question, “What are the experiences of mothers on parenting children with Thalassemia?”, the population is “mothers of children with Thalassemia,” the context is “parenting children with Thalassemia,” and the outcome of interest is “experiences.”

The purpose statement specifies the broad focus of the study, identifies the approach, and provides direction for the overall goal of the study. The major components of a purpose statement include the central phenomenon under investigation, the study design and the population of interest. Qualitative research does not require a-priori hypothesis.[ 13 , 14 , 15 ]

Example: Borimnejad et al . undertook a qualitative research on the lived experiences of women suffering from vitiligo. The purpose of this study was, “to explore lived experiences of women suffering from vitiligo using a hermeneutic phenomenological approach.” [ 16 ]

Review of the Literature

In quantitative research, the researchers do an extensive review of scientific literature prior to the commencement of the study. However, in qualitative research, only a minimal literature search is conducted at the beginning of the study. This is to ensure that the researcher is not influenced by the existing understanding of the phenomenon under the study. The minimal literature review will help the researchers to avoid the conceptual pollution of the phenomenon being studied. Nonetheless, an extensive review of the literature is conducted after data collection and analysis.[ 15 ]

Reflexivity

Reflexivity refers to critical self-appraisal about one's own biases, values, preferences, and preconceptions about the phenomenon under investigation. Maintaining a reflexive diary/journal is a widely recognized way to foster reflexivity. According to Creswell, “Reflexivity increases the credibility of the study by enhancing more neutral interpretations.”[ 7 ]

Types of Qualitative Research Designs

The qualitative research approach encompasses a wide array of research designs. The words such as types, traditions, designs, strategies of inquiry, varieties, and methods are used interchangeably. The major types of qualitative research designs are narrative research, phenomenological research, grounded theory research, ethnographic research, historical research, and case study research.[ 1 , 7 , 10 ]

Narrative research

Narrative research focuses on exploring the life of an individual and is ideally suited to tell the stories of individual experiences.[ 17 ] The purpose of narrative research is to utilize 'story telling' as a method in communicating an individual's experience to a larger audience.[ 18 ] The roots of narrative inquiry extend to humanities including anthropology, literature, psychology, education, history, and sociology. Narrative research encompasses the study of individual experiences and learning the significance of those experiences. The data collection procedures include mainly interviews, field notes, letters, photographs, diaries, and documents collected from one or more individuals. Data analysis involves the analysis of the stories or experiences through “re-storying of stories” and developing themes usually in chronological order of events. Rolls and Payne argued that narrative research is a valuable approach in health care research, to gain deeper insight into patient's experiences.[ 19 ]

Example: Karlsson et al . undertook a narrative inquiry to “explore how people with Alzheimer's disease present their life story.” Data were collected from nine participants. They were asked to describe about their life experiences from childhood to adulthood, then to current life and their views about the future life. [ 20 ]

Phenomenological research

Phenomenology is a philosophical tradition developed by German philosopher Edmond Husserl. His student Martin Heidegger did further developments in this methodology. It defines the 'essence' of individual's experiences regarding a certain phenomenon.[ 1 ] The methodology has its origin from philosophy, psychology, and education. The purpose of qualitative research is to understand the people's everyday life experiences and reduce it into the central meaning or the 'essence of the experience'.[ 21 , 22 ] The unit of analysis of phenomenology is the individuals who have had similar experiences of the phenomenon. Interviews with individuals are mainly considered for the data collection, though, documents and observations are also useful. Data analysis includes identification of significant meaning elements, textural description (what was experienced), structural description (how was it experienced), and description of 'essence' of experience.[ 1 , 7 , 21 ] The phenomenological approach is further divided into descriptive and interpretive phenomenology. Descriptive phenomenology focuses on the understanding of the essence of experiences and is best suited in situations that need to describe the lived phenomenon. Hermeneutic phenomenology or Interpretive phenomenology moves beyond the description to uncover the meanings that are not explicitly evident. The researcher tries to interpret the phenomenon, based on their judgment rather than just describing it.[ 7 , 21 , 22 , 23 , 24 ]

Example: A phenomenological study conducted by Cornelio et al . aimed at describing the lived experiences of mothers in parenting children with leukemia. Data from ten mothers were collected using in-depth semi-structured interviews and were analyzed using Husserl's method of phenomenology. Themes such as “pivotal moment in life”, “the experience of being with a seriously ill child”, “having to keep distance with the relatives”, “overcoming the financial and social commitments”, “responding to challenges”, “experience of faith as being key to survival”, “health concerns of the present and future”, and “optimism” were derived. The researchers reported the essence of the study as “chronic illness such as leukemia in children results in a negative impact on the child and on the mother.” [ 25 ]

Grounded Theory Research

Grounded theory has its base in sociology and propagated by two sociologists, Barney Glaser, and Anselm Strauss.[ 26 ] The primary purpose of grounded theory is to discover or generate theory in the context of the social process being studied. The major difference between grounded theory and other approaches lies in its emphasis on theory generation and development. The name grounded theory comes from its ability to induce a theory grounded in the reality of study participants.[ 7 , 27 ] Data collection in grounded theory research involves recording interviews from many individuals until data saturation. Constant comparative analysis, theoretical sampling, theoretical coding, and theoretical saturation are unique features of grounded theory research.[ 26 , 27 , 28 ] Data analysis includes analyzing data through 'open coding,' 'axial coding,' and 'selective coding.'[ 1 , 7 ] Open coding is the first level of abstraction, and it refers to the creation of a broad initial range of categories, axial coding is the procedure of understanding connections between the open codes, whereas selective coding relates to the process of connecting the axial codes to formulate a theory.[ 1 , 7 ] Results of the grounded theory analysis are supplemented with a visual representation of major constructs usually in the form of flow charts or framework diagrams. Quotations from the participants are used in a supportive capacity to substantiate the findings. Strauss and Corbin highlights that “the value of the grounded theory lies not only in its ability to generate a theory but also to ground that theory in the data.”[ 27 ]

Example: Williams et al . conducted a grounded theory research to explore the nature of relationship between the sense of self and the eating disorders. Data were collected form 11 women with a lifetime history of Anorexia Nervosa and were analyzed using the grounded theory methodology. Analysis led to the development of a theoretical framework on the nature of the relationship between the self and Anorexia Nervosa. [ 29 ]

Ethnographic research

Ethnography has its base in anthropology, where the anthropologists used it for understanding the culture-specific knowledge and behaviors. In health sciences research, ethnography focuses on narrating and interpreting the health behaviors of a culture-sharing group. 'Culture-sharing group' in an ethnography represents any 'group of people who share common meanings, customs or experiences.' In health research, it could be a group of physicians working in rural care, a group of medical students, or it could be a group of patients who receive home-based rehabilitation. To understand the cultural patterns, researchers primarily observe the individuals or group of individuals for a prolonged period of time.[ 1 , 7 , 30 ] The scope of ethnography can be broad or narrow depending on the aim. The study of more general cultural groups is termed as macro-ethnography, whereas micro-ethnography focuses on more narrowly defined cultures. Ethnography is usually conducted in a single setting. Ethnographers collect data using a variety of methods such as observation, interviews, audio-video records, and document reviews. A written report includes a detailed description of the culture sharing group with emic and etic perspectives. When the researcher reports the views of the participants it is called emic perspectives and when the researcher reports his or her views about the culture, the term is called etic.[ 7 ]

Example: The aim of the ethnographic study by LeBaron et al . was to explore the barriers to opioid availability and cancer pain management in India. The researchers collected data from fifty-nine participants using in-depth semi-structured interviews, participant observation, and document review. The researchers identified significant barriers by open coding and thematic analysis of the formal interview. [ 31 ]

Historical research

Historical research is the “systematic collection, critical evaluation, and interpretation of historical evidence”.[ 1 ] The purpose of historical research is to gain insights from the past and involves interpreting past events in the light of the present. The data for historical research are usually collected from primary and secondary sources. The primary source mainly includes diaries, first hand information, and writings. The secondary sources are textbooks, newspapers, second or third-hand accounts of historical events and medical/legal documents. The data gathered from these various sources are synthesized and reported as biographical narratives or developmental perspectives in chronological order. The ideas are interpreted in terms of the historical context and significance. The written report describes 'what happened', 'how it happened', 'why it happened', and its significance and implications to current clinical practice.[ 1 , 10 ]

Example: Lubold (2019) analyzed the breastfeeding trends in three countries (Sweden, Ireland, and the United States) using a historical qualitative method. Through analysis of historical data, the researcher found that strong family policies, adherence to international recommendations and adoption of baby-friendly hospital initiative could greatly enhance the breastfeeding rates. [ 32 ]

Case study research

Case study research focuses on the description and in-depth analysis of the case(s) or issues illustrated by the case(s). The design has its origin from psychology, law, and medicine. Case studies are best suited for the understanding of case(s), thus reducing the unit of analysis into studying an event, a program, an activity or an illness. Observations, one to one interviews, artifacts, and documents are used for collecting the data, and the analysis is done through the description of the case. From this, themes and cross-case themes are derived. A written case study report includes a detailed description of one or more cases.[ 7 , 10 ]

Example: Perceptions of poststroke sexuality in a woman of childbearing age was explored using a qualitative case study approach by Beal and Millenbrunch. Semi structured interview was conducted with a 36- year mother of two children with a history of Acute ischemic stroke. The data were analyzed using an inductive approach. The authors concluded that “stroke during childbearing years may affect a woman's perception of herself as a sexual being and her ability to carry out gender roles”. [ 33 ]

Sampling in Qualitative Research

Qualitative researchers widely use non-probability sampling techniques such as purposive sampling, convenience sampling, quota sampling, snowball sampling, homogeneous sampling, maximum variation sampling, extreme (deviant) case sampling, typical case sampling, and intensity sampling. The selection of a sampling technique depends on the nature and needs of the study.[ 34 , 35 , 36 , 37 , 38 , 39 , 40 ] The four widely used sampling techniques are convenience sampling, purposive sampling, snowball sampling, and intensity sampling.

Convenience sampling

It is otherwise called accidental sampling, where the researchers collect data from the subjects who are selected based on accessibility, geographical proximity, ease, speed, and or low cost.[ 34 ] Convenience sampling offers a significant benefit of convenience but often accompanies the issues of sample representation.

Purposive sampling

Purposive or purposeful sampling is a widely used sampling technique.[ 35 ] It involves identifying a population based on already established sampling criteria and then selecting subjects who fulfill that criteria to increase the credibility. However, choosing information-rich cases is the key to determine the power and logic of purposive sampling in a qualitative study.[ 1 ]

Snowball sampling

The method is also known as 'chain referral sampling' or 'network sampling.' The sampling starts by having a few initial participants, and the researcher relies on these early participants to identify additional study participants. It is best adopted when the researcher wishes to study the stigmatized group, or in cases, where findings of participants are likely to be difficult by ordinary means. Respondent ridden sampling is an improvised version of snowball sampling used to find out the participant from a hard-to-find or hard-to-study population.[ 37 , 38 ]

Intensity sampling

The process of identifying information-rich cases that manifest the phenomenon of interest is referred to as intensity sampling. It requires prior information, and considerable judgment about the phenomenon of interest and the researcher should do some preliminary investigations to determine the nature of the variation. Intensity sampling will be done once the researcher identifies the variation across the cases (extreme, average and intense) and picks the intense cases from them.[ 40 ]

Deciding the Sample Size

A-priori sample size calculation is not undertaken in the case of qualitative research. Researchers collect the data from as many participants as possible until they reach the point of data saturation. Data saturation or the point of redundancy is the stage where the researcher no longer sees or hears any new information. Data saturation gives the idea that the researcher has captured all possible information about the phenomenon of interest. Since no further information is being uncovered as redundancy is achieved, at this point the data collection can be stopped. The objective here is to get an overall picture of the chronicle of the phenomenon under the study rather than generalization.[ 1 , 7 , 41 ]

Data Collection in Qualitative Research

The various strategies used for data collection in qualitative research includes in-depth interviews (individual or group), focus group discussions (FGDs), participant observation, narrative life history, document analysis, audio materials, videos or video footage, text analysis, and simple observation. Among all these, the three popular methods are the FGDs, one to one in-depth interviews and the participant observation.

FGDs are useful in eliciting data from a group of individuals. They are normally built around a specific topic and are considered as the best approach to gather data on an entire range of responses to a topic.[ 42 Group size in an FGD ranges from 6 to 12. Depending upon the nature of participants, FGDs could be homogeneous or heterogeneous.[ 1 , 14 ] One to one in-depth interviews are best suited to obtain individuals' life histories, lived experiences, perceptions, and views, particularly while exporting topics of sensitive nature. In-depth interviews can be structured, unstructured, or semi-structured. However, semi-structured interviews are widely used in qualitative research. Participant observations are suitable for gathering data regarding naturally occurring behaviors.[ 1 ]

Data Analysis in Qualitative Research

Various strategies are employed by researchers to analyze data in qualitative research. Data analytic strategies differ according to the type of inquiry. A general content analysis approach is described herewith. Data analysis begins by transcription of the interview data. The researcher carefully reads data and gets a sense of the whole. Once the researcher is familiarized with the data, the researcher strives to identify small meaning units called the 'codes.' The codes are then grouped based on their shared concepts to form the primary categories. Based on the relationship between the primary categories, they are then clustered into secondary categories. The next step involves the identification of themes and interpretation to make meaning out of data. In the results section of the manuscript, the researcher describes the key findings/themes that emerged. The themes can be supported by participants' quotes. The analytical framework used should be explained in sufficient detail, and the analytic framework must be well referenced. The study findings are usually represented in a schematic form for better conceptualization.[ 1 , 7 ] Even though the overall analytical process remains the same across different qualitative designs, each design such as phenomenology, ethnography, and grounded theory has design specific analytical procedures, the details of which are out of the scope of this article.

Computer-Assisted Qualitative Data Analysis Software (CAQDAS)

Until recently, qualitative analysis was done either manually or with the help of a spreadsheet application. Currently, there are various software programs available which aid researchers to manage qualitative data. CAQDAS is basically data management tools and cannot analyze the qualitative data as it lacks the ability to think, reflect, and conceptualize. Nonetheless, CAQDAS helps researchers to manage, shape, and make sense of unstructured information. Open Code, MAXQDA, NVivo, Atlas.ti, and Hyper Research are some of the widely used qualitative data analysis software.[ 14 , 43 ]

Reporting Guidelines

Consolidated Criteria for Reporting Qualitative Research (COREQ) is the widely used reporting guideline for qualitative research. This 32-item checklist assists researchers in reporting all the major aspects related to the study. The three major domains of COREQ are the 'research team and reflexivity', 'study design', and 'analysis and findings'.[ 44 , 45 ]

Critical Appraisal of Qualitative Research

Various scales are available to critical appraisal of qualitative research. The widely used one is the Critical Appraisal Skills Program (CASP) Qualitative Checklist developed by CASP network, UK. This 10-item checklist evaluates the quality of the study under areas such as aims, methodology, research design, ethical considerations, data collection, data analysis, and findings.[ 46 ]

Ethical Issues in Qualitative Research

A qualitative study must be undertaken by grounding it in the principles of bioethics such as beneficence, non-maleficence, autonomy, and justice. Protecting the participants is of utmost importance, and the greatest care has to be taken while collecting data from a vulnerable research population. The researcher must respect individuals, families, and communities and must make sure that the participants are not identifiable by their quotations that the researchers include when publishing the data. Consent for audio/video recordings must be obtained. Approval to be in FGDs must be obtained from the participants. Researchers must ensure the confidentiality and anonymity of the transcripts/audio-video records/photographs/other data collected as a part of the study. The researchers must confirm their role as advocates and proceed in the best interest of all participants.[ 42 , 47 , 48 ]

Rigor in Qualitative Research

The demonstration of rigor or quality in the conduct of the study is essential for every research method. However, the criteria used to evaluate the rigor of quantitative studies are not be appropriate for qualitative methods. Lincoln and Guba (1985) first outlined the criteria for evaluating the qualitative research often referred to as “standards of trustworthiness of qualitative research”.[ 49 ] The four components of the criteria are credibility, transferability, dependability, and confirmability.

Credibility refers to confidence in the 'truth value' of the data and its interpretation. It is used to establish that the findings are true, credible and believable. Credibility is similar to the internal validity in quantitative research.[ 1 , 50 , 51 ] The second criterion to establish the trustworthiness of the qualitative research is transferability, Transferability refers to the degree to which the qualitative results are applicability to other settings, population or contexts. This is analogous to the external validity in quantitative research.[ 1 , 50 , 51 ] Lincoln and Guba recommend authors provide enough details so that the users will be able to evaluate the applicability of data in other contexts.[ 49 ] The criterion of dependability refers to the assumption of repeatability or replicability of the study findings and is similar to that of reliability in quantitative research. The dependability question is 'Whether the study findings be repeated of the study is replicated with the same (similar) cohort of participants, data coders, and context?'[ 1 , 50 , 51 ] Confirmability, the fourth criteria is analogous to the objectivity of the study and refers the degree to which the study findings could be confirmed or corroborated by others. To ensure confirmability the data should directly reflect the participants' experiences and not the bias, motivations, or imaginations of the inquirer.[ 1 , 50 , 51 ] Qualitative researchers should ensure that the study is conducted with enough rigor and should report the measures undertaken to enhance the trustworthiness of the study.

Conclusions

Qualitative research studies are being widely acknowledged and recognized in health care practice. This overview illustrates various qualitative methods and shows how these methods can be used to generate evidence that informs clinical practice. Qualitative research helps to understand the patterns of health behaviors, describe illness experiences, design health interventions, and develop healthcare theories. The ultimate strength of the qualitative research approach lies in the richness of the data and the descriptions and depth of exploration it makes. Hence, qualitative methods are considered as the most humanistic and person-centered way of discovering and uncovering thoughts and actions of human beings.

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In Tight Presidential Race, Voters Are Broadly Critical of Both Biden and Trump

• 4. Joe Biden’s approval ratings

Table of Contents

• The state of the 2024 presidential race
• Other findings: Biden’s job approval ticks up, Trump’s election-related criminal charges
• Educational differences in candidate support
• What are 2020 voters’ preferences today?
• How Biden’s supporters view his personal traits
• How Trump’s supporters view his personal traits
• Views of Biden’s presidency and retrospective evaluations of Trump’s time in office
• Attention to the candidates
• Does it matter who wins?
• What if voters could change the presidential ballot?
• How important is it for the losing candidate to publicly acknowledge the winner?
• Acknowledgments
• The American Trends Panel survey methodology
• Validated voters

Americans’ ratings of Joe Biden’s job performance remain more negative than positive and have been largely stable over the last year: Today, 35% of Americans approve of his performance, while 62% disapprove.

Trends among Democrats

About two-thirds of Democrats and Democratic-leaning independents (65%) approve of Biden’s job performance. This is a modest improvement from January, when 61% of Democrats approved of his job performance. However, Biden’s job rating among Democrats remains lower than it was in the first year of his administration.

Trends among Republicans

Just 6% of Republicans and Republican leaners approve of Biden’s job performance. This is essentially unchanged over the last several years.

Biden’s job approval among demographic groups

While Biden’s job rating continues to differ by race and ethnicity, education, and age, majorities in most groups disapprove of his performance.

Race and ethnicity

Majorities of White (66%), Hispanic (63%) and Asian (57%) Americans disapprove of Biden’s job performance.

Black adults’ ratings are more positive than negative: A narrow majority of Black adults (55%) say they approve of Biden’s job performance, a modest improvement from earlier this year. (In January, 48% of Black adults approved of Biden.)

Younger adults’ evaluations of Biden continue to be more negative than older adults’ ratings. About four-in-ten Americans ages 50 and older (39%) approve of his job performance, compared with 34% of those 30 to 49 and 28% of adults under 30.

Majorities of adults who have a four-year college degree (61%), some college experience (66%), or a high school diploma or less education (66%) say they disapprove of Biden’s job performance. Ratings among those with a postgraduate degree are more evenly divided (52% approve, 47% disapprove).

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Driving Innovations in Biostatistics with Denise Scholtens, PhD

“I'm continually surprised by new data types. I think that we will see the emergence of a whole new kind of technology that we probably can't even envision five years from now…When I think about where the field has come over the past 20 years, it's just phenomenal.”  —  Denise Scholtens, PhD  

• Director, Northwestern University Data Analysis and Coordinating Center (NUDACC)  
• Chief of Biostatistics in the Department of Preventive Medicine  
• Professor of Preventive Medicine in the Division of Biostatistics and of Neurological Surgery  
• Member of Northwestern University Clinical and Translational Sciences Institute (NUCATS)  
• Member of the Robert H. Lurie Comprehensive Cancer Center  

Episode Notes 

Since arriving at Feinberg in 2004, Scholtens has played a central role in the dramatic expansion of biostatistics at the medical school. Now the Director of NUDACC, Scholtens brings her expertise and leadership to large-scale, multicenter studies that can lead to clinical and public health practice decision-making.    

• After discovering her love of statistics as a high school math teacher, Scholtens studied bioinformatics in a PhD program before arriving at Feinberg in 2004.  
• Feinberg’s commitment to biostatistics has grown substantially in recent decades. Scholtens was only one of five biostatisticians when she arrived. Now she is part of a division with almost 50 people.  
• She says being a good biostatistician requires curiosity about other people’s work, knowing what questions to ask and tenacity to understand subtitles of so much data.   
• At NUDACC, Scholtens and her colleagues specialize in large-scale, multicenter prospective studies and clinical trials that lead to clinical or public health practice decision-making. They operate at the executive level and oversee all aspects of the study design.  
• Currently, Scholtens is involved with the launch of a large study, along with The Ohio State University, that received a $14 million grant to look at the effectiveness of aspirin in the prevention of hypertensive disorders in pregnancy.  
• Scholtens first started her work in data coordinating through the Hyperglycemia Adverse Pregnancy Outcome (HAPO) study, which looked at 25,000 pregnant individuals. This led to a continued interest in fetal and maternal health.   
• When it comes to supportive working environments, Scholtens celebrates the culture at Feinberg, and especially her division in biostatistics, for being collaborative as well as genuinely supportive of each other’s projects. She attributes this to strong leadership which established a culture with these guiding principles.   

Additional Reading  

• Read more about the ASPIRIN trial and other projects taking place at NUDACC   
• Discover a study linking mothers’ obesity-related genes to babies’ birth weight, which Scholtens worked in through the HAPO study   
• Browse all of Scholtens recent publications 

Recorded on February 21, 2024.

Continuing Medical Education Credit

Physicians who listen to this podcast may claim continuing medical education credit after listening to an episode of this program..

Target Audience

Academic/Research, Multiple specialties

Learning Objectives

At the conclusion of this activity, participants will be able to:

• Identify the research interests and initiatives of Feinberg faculty.
• Discuss new updates in clinical and translational research.

Accreditation Statement

The Northwestern University Feinberg School of Medicine is accredited by the Accreditation Council for Continuing Medical Education (ACCME) to provide continuing medical education for physicians.

Credit Designation Statement

The Northwestern University Feinberg School of Medicine designates this Enduring Material for a maximum of 0.50  AMA PRA Category 1 Credit(s)™.  Physicians should claim only the credit commensurate with the extent of their participation in the activity.

American Board of Surgery Continuous Certification Program

Successful completion of this CME activity enables the learner to earn credit toward the CME requirement(s) of the American Board of Surgery’s Continuous Certification program. It is the CME activity provider's responsibility to submit learner completion information to ACCME for the purpose of granting ABS credit.

All the relevant financial relationships for these individuals have been mitigated.

Disclosure Statement

Denise Scholtens, PhD, has nothing to disclose.  Course director, Robert Rosa, MD, has nothing to disclose. Planning committee member, Erin Spain, has nothing to disclose.  FSM’s CME Leadership, Review Committee, and Staff have no relevant financial relationships with ineligible companies to disclose.

Read the Full Transcript

[00:00:00] Erin Spain, MS: This is Breakthroughs, a podcast from Northwestern University Feinberg School of Medicine. I'm Erin Spain, host of the show. Northwestern University Feinberg School of Medicine is home to a team of premier faculty and staff biostatisticians, who are the driving force of data analytic innovation and excellence here. Today, we are talking with Dr. Denise Scholtens, a leader in biostatistics at Northwestern, about the growing importance of the field, and how she leverages her skills to collaborate on several projects in Maternal and Fetal Health. She is the Director of the Northwestern University Data Analysis and Coordinating Center, NUDACC, and Chief of Biostatistics in the Department of Preventive Medicine, as well as Professor of Preventive Medicine and Neurological Surgery. Welcome to the show.  

[00:01:02] Denise Scholtens, PhD: Thank you so much.  

[00:01:02] Erin Spain, MS: So you have said in the past that you were drawn to this field of biostatistics because you're interested in both math and medicine, but not interested in becoming a clinician. Tell me about your path into the field and to Northwestern.  

[00:01:17] Denise Scholtens, PhD: You're right. I have always been interested in both math and medicine. I knew I did not want to be involved in clinical care. Originally, fresh out of college, I was a math major and I taught high school math for a couple of years. I really enjoyed that, loved the kids, loved the teaching parts of things. Interestingly enough, my department chair at the time assigned me to teach probability and statistics to high school seniors. I had never taken a statistics course before, so I was about a week ahead of them in our classes and found that I just really enjoyed the discipline. So as much as I loved teaching, I did decide to go ahead and invest in this particular new area that I had found and I really enjoyed. So I wanted to figure out how I could engage in the field of statistics. Decided to see, you know, exactly how studying statistics could be applied to medicine. At the time, Google was brand new. So I literally typed in the two words math and medicine to see what would come up. And the discipline of biostatistics is what Google generated. And so here I am, I applied to grad school and it's been a great fit for me.  

[00:02:23] Erin Spain, MS: Oh, that's fantastic. So you went on to get a PhD, and then you came to Northwestern in 2004. And so tell me a little bit about the field then and how it's changed so dramatically since.  

[00:02:36] Denise Scholtens, PhD: So yes, I started here at Northwestern in 2004, just a few months after I had defended my thesis. At the time there was really an emerging field of study called bioinformatics. So I wrote my thesis in the space of genomics data analysis with what at the time was a brand new technology, microarrays. This was the first way we could measure gene transcription at a high throughput level. So I did my thesis work in that space. I studied at an institution with a lot of strengths and very classical statistics. So things that we think of in biostatistics like clinical trial design, observational study analysis, things like that. So I had really classic biostatistics training and then complimented that with sort of these emerging methods with these high dimensional data types. So I came to Northwestern here and I sort of felt like I lived in two worlds. I had sort of classic biostat clinical trials, which were certainly, you know, happening here. And, that work was thriving here at Northwestern, but I had this kind of new skillset, and I just didn't quite know how to bring the two together. That was obviously a long time ago, 20 years ago. Now we think of personalized medicine and genomic indicators for treatment and, you know, there's a whole variety of omics data variations on the theme that are closely integrated with clinical and population level health research. So there's no longer any confusion for me about how those two things come together. You know, they're two disciplines that very nicely complement each other. But yeah, I think that does speak to how the field has changed, you know, these sort of classic biostatistics methods are really nicely blended with a lot of high dimensional data types. And it's been fun to be a part of that.  

[00:04:17] Erin Spain, MS: There were only a handful of folks like you at Northwestern at the time. Tell me about now and the demand for folks with your skill set.  

[00:04:26] Denise Scholtens, PhD: When I came to Northwestern, I was one of a very small handful of biostatistics faculty. There were five of us. We were not even called a division of biostatistics. We were just here as the Department of Preventive Medicine. And a lot of the work we did was really very tightly integrated with the epidemiologists here in our department and we still do a lot of that for sure. There was also some work going on with the Cancer Center here at Northwestern. But yeah, a pretty small group of us, who has sort of a selected set of collaborations. You know, I contrast that now to our current division of biostatistics where we are over 20s, pushing 25, depending on exactly how you want to count. Hoping to bring a couple of new faculty on board this calendar year. We have a staff of about 25 statistical analysts. And database managers and programmers. So you know, when I came there were five faculty members and I think two master's level staff. We are now pushing, you know, pushing 50 people in our division here so it's a really thriving group.  

[00:05:26] Erin Spain, MS: in your opinion, what makes a good biostatistician? Do you have to have a little bit of a tough skin to be in this field?  

Denise Scholtens, PhD: I do think it's a unique person who wants to be a biostatistician. There are a variety of traits that can lead to success in this space. First of all, I think it's helpful to be wildly curious about somebody else's work. To be an excellent collaborative biostatistician, you have to be able to learn the language of another discipline. So some other clinical specialty or public health application. Another trait that makes a biostatistician successful is to be able to ask the right questions about data that will be collected or already have been collected. So understanding the subtleties there, the study design components that lead to why we have the data that we have. You know, a lot of our data, you could think of it in a simple flat file, right? Like a Microsoft Excel file with rows and columns. That certainly happens a lot, but there are a lot of incredibly innovative data types out there: wearables technology, imaging data, all kinds of high dimensional data. So I think a tenacity to understand all of the subtleties of those data and to be able to ask the right questions. And then I think for a biostatistician at a medical school like ours, being able to blend those two things, so understanding what the data are and what you have to work with and what you're heading toward, but then also facilitating the translation of those analytic findings for the audience that really wants to understand them. So for the clinicians, for the patients, for participants and the population that the findings would apply to.   

Erin Spain, MS: It must feel good, though, in those situations where you are able to help uncover something to improve a study or a trial.  

[00:07:07] Denise Scholtens, PhD: It really does. This is a job that's easy to get out of bed for in the morning. There's a lot of really good things that happen here. It's exciting to know that the work we do could impact clinical practice, could impact public health practice. I think in any job, you know, you can sometimes get bogged down by the amount of work or the difficulty of the work or the back and forth with team members. There's just sort of all of the day to day grind, but to be able to take a step back and remember the actual people who are affected by our own little niche in this world. It's an incredibly helpful and motivating practice that I often keep to remember exactly why I'm doing what I'm doing and who I'm doing it for.  

[00:07:50] Erin Spain, MS: Well, and another important part of your work is that you are a leader. You are leading the center, NUDACC, that you mentioned, Northwestern University Data Analysis and Coordinating Center. Now, this has been open for about five years. Tell me about the center and why it's so crucial to the future of the field.  

[00:08:08] Denise Scholtens, PhD: We specialize at NUDACC in large scale, multicenter prospective studies. So these are the clinical trials or the observational studies that often, most conclusively, lead to clinical or public health practice decision making. We focus specifically on multicenter work. Because it requires a lot of central coordination and we've specifically built up our NUDACC capacity to handle these multi center investigations where we have a centralized database, we have centralized and streamlined data quality assurance pipelines. We can help with central team leadership and organization for large scale networks. So we have specifically focused on those areas. There's a whole lot of project management and regulatory expertise that we have to complement our data analytics strengths as well. I think my favorite part of participating in these studies is we get involved at the very beginning. We are involved in executive level planning of these studies. We oversee all components of study design. We are intimately involved in the development of the data capture systems. And in the QA of it. We do all of this work on the front end so that we get all of the fun at the end with the statistics and can analyze data that we know are scientifically sound, are well collected, and can lead to, you know, really helpful scientific conclusions.  

[00:09:33] Erin Spain, MS: Tell me about that synergy between the clinicians and the other investigators that you're working with on these projects.  

[00:09:41] Denise Scholtens, PhD: It is always exciting, often entertaining. Huge range of scientific opinion and expertise and points of view, all of which are very valid and very well informed. All of the discussion that could go into designing and launching a study, it's just phenomenally interesting and trying to navigate all of that and help bring teams to consensus in terms of what is scientifically most relevant, what's going to be most impactful, what is possible given the logistical strengths. Taking all of these well informed, valid, scientific points of view and being a part of the team that helps integrate them all toward a cohesive study design and a well executed study. That's a unique part of the challenge that we face here at NUDACC, but an incredibly rewarding one. It's also such an honor and a gift to be able to work with such a uniformly gifted set of individuals. Just the clinical researchers who devote themselves to these kinds of studies are incredibly generous, incredibly thoughtful and have such care for their patients and the individuals that they serve, that to be able to sit with them and think about the next steps for a great study is a really unique privilege.  

[00:10:51] Erin Spain, MS: How unique is a center like this at a medical school?  

[00:10:55] Denise Scholtens, PhD: It's fairly unique to have a center like this at a medical school. Most of the premier medical research institutions do have some level of data coordinating center capacity. We're certainly working toward trying to be one of the nation's best, absolutely, and build up our capacity for doing so. I'm actually currently a part of a group of data coordinating centers where it's sort of a grassroots effort right now to organize ourselves and come up with, you know, some unified statements around the gaps that we see in our work, the challenges that we face strategizing together to improve our own work and to potentially contribute to each other's work. I think maybe the early beginnings of a new professional organization for data coordinating centers. We have a meeting coming up of about, I think it's 12 to 15 different institutions, academic research institutions, specifically medical schools that have centers like ours to try to talk through our common pain points and also celebrate our common victories.  

[00:11:51] Erin Spain, MS: I want to shift gears a little bit to talk about some of your research collaborations, many of which focus on maternal and fetal health and pregnancy. You're now involved with a study with folks at the Ohio State University that received a 14 million grant looking at the effectiveness of aspirin in the prevention of hypertensive disorders in pregnancy. Tell me about this work.  

[00:12:14] Denise Scholtens, PhD: Yes, this is called the aspirin study. I suppose not a very creative name, but a very appropriate one. What we'll be doing in this study is looking at two different doses of aspirin for trying to prevent maternal hypertensive disorders of pregnancy in women who are considered at high risk for these disorders. This is a huge study. Our goal is to enroll 10,742 participants. This will take place at 11 different centers across the nation. And yes, we at NUDACC will serve as the data coordinating center here, and we are partnering with the Ohio State University who will house the clinical coordinating center. So this study is designed to look at two different doses to see which is more effective at preventing hypertensive disorders of pregnancy. So that would include gestational hypertension and preeclampsia. What's really unique about this study and the reason that it is so large is that it is specifically funded to look at what's called a heterogeneity of treatment effect. What that is is a difference in the effectiveness of aspirin in preventing maternal hypertensive disorders, according to different subgroups of women. We'll specifically have sufficient statistical power to test for differences in treatment effectiveness. And we have some high priority subgroups that we'll be looking at. One is a self-identified race. There's been a noted disparity in maternal hypertensive disorders, for individuals who self identify according to different races. And so we will be powered to see if aspirin has comparable effectiveness and hopefully even better effectiveness for the groups who really need it, to bring those rates closer to equity which is, you know, certainly something we would very strongly desire to see. We'll also be able to look at subgroups of women according to obesity, according to maternal age at pregnancy, according to the start time of aspirin when aspirin use is initiated during pregnancy. So that's why the trial is so huge. For a statistician, the statisticians out there who might be listening, this is powered on a statistical interaction term, which doesn't happen very often. So it's exciting that the trial is funded in that way.  

[00:14:27] Erin Spain, MS: Tell me a little bit more about this and how your specific skills are going to be utilized in this study.  

[00:14:32] Denise Scholtens, PhD: Well, there are three biostatistics faculty here at Northwestern involved in this. So we're definitely dividing and conquering. Right now, we're planning this study and starting to stand it up. So we're developing our statistical analysis plans. We're developing the database. We are developing our randomization modules. So this is the piece of the study where participants are randomized to which dose of aspirin they're going to receive. Because of all of the subgroups that we're planning to study, we need to make especially sure that the assignments of which dose of aspirin are balanced within and across all of those subgroups. So we're going to be using some adaptive randomization techniques to ensure that that balance is there. So there's some fun statistical and computer programming innovation that will be applied to accomplish those things. So right now, there are usually two phases of a study that are really busy for us. That's starting to study up and that's where we are. And so yes, it is very busy for us right now. And then at the end, you know, in five years or so, once recruitment is over, then we analyze all the data,  

[00:15:36] Erin Spain, MS: Are there any guidelines out there right now about the use of aspirin in pregnancy. What do you hope that this could accomplish?  

 Prescribing aspirin use for the prevention of hypertension during pregnancy is not uncommon at all. That is actually fairly routinely done, but that it's not outcomes based in terms of which dosage is most effective. So 81 milligrams versus 162 milligrams. That's what we will be evaluating. And my understanding is that clinicians prescribe whatever they think is better, and I'm sure those opinions are very well informed but there is very little outcome based evidence for this in this particular population that we'll be studying. So that would be the goal here, would be to hopefully very conclusively say, depending on the rates of the hypertensive disorders that we see in our study, which of the two doses of aspirin is more effective. Importantly, we will also be tracking any side effects of taking aspirin. And so that's also very much often a part of the evaluation of You know, taking a, taking a drug, right, is how safe is it? So we'll be tracking that very closely as well. Another unique part of this study is that we will be looking at factors that help explain aspirin adherence. So we are going to recommend that participants take their dose of aspirin daily. We don't necessarily expect that's always going to happen, so we are going to measure how much of their prescribed dose they are actually taking and then look at, you know, factors that contribute to that. So be they, you know, social determinants of health or a variety of other things that we'll investigate to try to understand aspirin adherence, and then also model the way in which that adherence could have affected outcomes.  

Erin Spain, MS: This is not the first study that you've worked on involving maternal and fetal health. Tell me about your interest in this particular area, this particular field, and some of the other work that you've done.  

[00:17:31] Denise Scholtens, PhD: So I actually first got my start in data coordinating work through the HAPO study. HAPO stands for Hyperglycemia Adverse Pregnancy Outcome. That study was started here at Northwestern before I arrived. Actually recruitment to the study occurred between 2000 and 2006. Northwestern served as the central coordinating center for that study. It was an international study of 25,000 pregnant individuals who were recruited and then outcomes were evaluated both in moms and newborns. When I was about mid career here, all the babies that were born as a part of HAPO were early teenagers. And so we conducted a follow up study on the HAPO cohort. So that's really when I got involved. It was my first introduction to being a part of a coordinating center. As I got into it, though, I saw the beauty of digging into all of these details for a huge study like this and then saw these incredible resources that were accumulated through the conduct of such a large study. So the data from the study itself is, was of course, a huge resource. But then also we have all of these different samples that sit in a biorepository, right? So like usually blood sample collection is a big part of a study like this. So all these really fun ancillary studies could spin off of the HAPO study. So we did some genomics work. We did some metabolomics work. We've integrated the two and what's called integrated omics. So, you know, my work in this space really started in the HAPO study. And I have tremendously enjoyed integrating these high dimensional data types that have come from these really rich data resources that have all, you know, resulted because of this huge multicenter longitudinal study. So I kind of accidentally fell into the space of maternal and fetal health, to be honest. But I just became phenomenally interested in it and it's been a great place.  

[00:19:24] Erin Spain, MS: Would you say that this is also a population that hasn't always been studied very much in biomedical science?  

[00:19:32] Denise Scholtens, PhD: I think that that is true, for sure. There are some unique vulnerabilities, right, for a pregnant individual and for the fetus, right, and in that situation. You know, the vast majority of what we do is really only pertaining to the pregnant participant but, you know, there are certainly fetal outcomes, newborn outcomes. And so, I think conducting research in this particular population is a unique opportunity and there are components of it that need to be treated with special care given sort of this unique phase of human development and this unique phase of life.  

[00:20:03] Erin Spain, MS: So, as data generation just really continues to explode, and technology is advancing so fast, faster than ever, where do you see this field evolving, the field of biostatistics, where do you see it going in the next five to ten years?  

[00:20:19] Denise Scholtens, PhD: That's a great question. I think all I can really tell you is that I'm continually surprised by new data types. I think that we will see an emergence of a whole new kind of technology that we probably can't even envision five years from now. And I think that the fun part about being a biostatistician is seeing what's happening and then trying to wrap your mind around the possibilities and the actual nature of the data that are collected. You know, I think back to 2004 and this whole high throughput space just felt so big. You know, we could look at gene transcription across the genome using one technology. And we could only look at one dimension of it. Right now it just seems so basic. When I think about where the field has come over the past 20 years, it's just phenomenal. I think we're seeing a similar emergence of the scale and the type of data in the imaging space and in the wearable space, with EHR data, just. You know, all these different technologies for capturing, capturing things that we just never even conceived of before. I do hope that we continue to emphasize making meaningful and translatable conclusions from these data. So actionable conclusions that can impact the way that we care for others around us. I do hope that remains a guiding principle in all that we do.  

[00:21:39] Erin Spain, MS: Why is Northwestern Medicine and Northwestern Feinberg School of Medicine such a supportive environment to pursue this type of work?  

[00:21:47] Denise Scholtens, PhD: That's a wonderful question and one, honestly, that faculty candidates often ask me. When we bring faculty candidates in to visit here at Northwestern, they immediately pick up on the fact that we are a collaborative group of individuals who are for each other. Who want to see each other succeed, who are happy to share the things that we know and support each other's work, and support each other's research, and help strategize around the things that we want to accomplish. There is a strong culture here, at least in my department and in my division that I've really loved that continues to persist around really genuinely collaborating and genuinely sharing lessons learned and genuinely supporting each other as we move toward common goals. We've had some really strong, generous leadership who has helped us to get there and has helped create a culture where those are the guiding principles. In my leadership role is certainly something that I strive to maintain. Really hope that's true. I'm sure I don't do it perfectly but that's absolutely something I want to see accomplished here in the division and in NUDACC for sure.  

[00:22:50] Erin Spain, MS: Well, thank you so much for coming on the show and telling us about your path here to Northwestern and all of the exciting work that we can look forward to in the coming years.  

[00:22:59] Denise Scholtens, PhD: Thank you so much for having me. I've really enjoyed this.  

[00:23:01] Erin Spain, MS: You can listen to shows from the Northwestern Medicine Podcast Network to hear more about the latest developments in medical research, health care, and medical education. Leaders from across specialties speak to topics ranging from basic science to global health to simulation education. Learn more at feinberg. northwestern.edu/podcasts.  

This paper is in the following e-collection/theme issue:

Published on 26.4.2024 in Vol 26 (2024)

Understanding Symptom Self-Monitoring Needs Among Postpartum Black Patients: Qualitative Interview Study

Authors of this article:

Original Paper

• Natalie Benda 1 , PhD   ; 
• Sydney Woode 2 , BSc   ; 
• Stephanie Niño de Rivera 1 , BS   ; 
• Robin B Kalish 3 , MD   ; 
• Laura E Riley 3 , MD   ; 
• Alison Hermann 4 , MD   ; 
• Ruth Masterson Creber 1 , MSc, PhD, RN   ; 
• Eric Costa Pimentel 5 , MS   ; 
• Jessica S Ancker 6 , MPH, PhD  

1 School of Nursing, Columbia University, New York, NY, United States

2 Department of Radiology, Early Lung and Cardiac Action Program, The Mount Sinai Health System, New York, NY, United States

3 Department of Obstetrics and Gynecology, Weill Cornell Medicine, New York, NY, United States

4 Department of Psychiatry, Weill Cornell Medicine, New York, NY, United States

5 Department of Population Health Sciences, Weill Cornell Medicine, New York, NY, United States

6 Department of Biomedical Informatics, Vanderbilt University Medical Center, Nashville, TN, United States

Corresponding Author:

Natalie Benda, PhD

School of Nursing

Columbia University

560 West 168th Street

New York, NY, 10032

United States

Phone: 1 212 305 9547

Email: [email protected]

Background: Pregnancy-related death is on the rise in the United States, and there are significant disparities in outcomes for Black patients. Most solutions that address pregnancy-related death are hospital based, which rely on patients recognizing symptoms and seeking care from a health system, an area where many Black patients have reported experiencing bias. There is a need for patient-centered solutions that support and encourage postpartum people to seek care for severe symptoms.

Objective: We aimed to determine the design needs for a mobile health (mHealth) patient-reported outcomes and decision-support system to assist Black patients in assessing when to seek medical care for severe postpartum symptoms. These findings may also support different perinatal populations and minoritized groups in other clinical settings.

Methods: We conducted semistructured interviews with 36 participants—15 (42%) obstetric health professionals, 10 (28%) mental health professionals, and 11 (31%) postpartum Black patients. The interview questions included the following: current practices for symptom monitoring, barriers to and facilitators of effective monitoring, and design requirements for an mHealth system that supports monitoring for severe symptoms. Interviews were audio recorded and transcribed. We analyzed transcripts using directed content analysis and the constant comparative process. We adopted a thematic analysis approach, eliciting themes deductively using conceptual frameworks from health behavior and human information processing, while also allowing new themes to inductively arise from the data. Our team involved multiple coders to promote reliability through a consensus process.

Results: Our findings revealed considerations related to relevant symptom inputs for postpartum support, the drivers that may affect symptom processing, and the design needs for symptom self-monitoring and patient decision-support interventions. First, participants viewed both somatic and psychological symptom inputs as important to capture. Second, self-perception; previous experience; sociocultural, financial, environmental, and health systems–level factors were all perceived to impact how patients processed, made decisions about, and acted upon their symptoms. Third, participants provided recommendations for system design that involved allowing for user control and freedom. They also stressed the importance of careful wording of decision-support messages, such that messages that recommend them to seek care convey urgency but do not provoke anxiety. Alternatively, messages that recommend they may not need care should make the patient feel heard and reassured.

Conclusions: Future solutions for postpartum symptom monitoring should include both somatic and psychological symptoms, which may require combining existing measures to elicit symptoms in a nuanced manner. Solutions should allow for varied, safe interactions to suit individual needs. While mHealth or other apps may not be able to address all the social or financial needs of a person, they may at least provide information, so that patients can easily access other supportive resources.

Introduction

This study focused on designing a culturally congruent mobile health (mHealth) app to support postpartum symptom monitoring, as the current practice does not adequately support patients in identifying the warning signs of pregnancy-related death (PRD). First, we describe the public health case for symptom monitoring and decision support for PRD, specifically among US-based, Black patients, a group that faces severe disparities [ 1 , 2 ]. Next, we discuss why the current mechanisms for symptom monitoring and decision support are insufficient. We then outline the existing solutions while also emphasizing the need for new interventions, particularly why those using a combination of mHealth and patient-reported outcomes (PROs) may be appropriate. Finally, we introduce a conceptual model used to accomplish our study objectives.

PRD and Associated Health Disparities

The pregnancy-related mortality ratio has increased by >200% in the United States in the past 2 decades, and in a recent review of PRDs, experts estimated that 80% of the deaths were preventable [ 3 ]. The Centers for Disease Control and Prevention (CDC) defines PRD as “the death of a woman while pregnant or within 1 year of the end of pregnancy from any cause related to or aggravated by the pregnancy” [ 4 , 5 ]. Mental health conditions (22.7%), hemorrhage (13.7%), cardiac and coronary conditions (12.8%), infection (9.2%), thrombotic embolism (8.7%), and cardiomyopathy (8.5%) have been cited as the most common causes for PRD [ 3 ]. Although the global maternal mortality rate has declined, the global rates are still high with 287,000 people dying following childbirth in 2020. There are significant disparities in maternal mortality based on a country’s income, with almost 95% of the cases occurring in low- and middle-income countries [ 6 ]. Stark disparities in pregnancy-related outcomes in the United States, such as PRD, exist based on race. Specifically, Black or African American (henceforth, referred to as “Black”) perinatal patients experience PRD 3 times more than White perinatal patients [ 1 , 2 , 7 - 10 ].

The disparities in maternal health outcomes experienced by Black patients in the United States are based on inequitable access to care, biased treatment, and inadequate communication, driven by systemic racism and all the cascading effects it creates. Black perinatal patients are significantly more likely to be uninsured and significantly less likely to have a usual source of medical care (eg, a primary care clinician) than White patients [ 7 , 10 ]. When Black patients seek care, they face implicit biases that negatively affect care quality and health outcomes [ 1 , 7 , 10 - 12 ]. Unsurprisingly, these biases have led to reduced trust in the health care system among Black patients [ 13 - 17 ]. Black patients also receive less patient-centered communication and feel that they have poorer access to communication with their medical team [ 10 , 18 , 19 ]. Our study aimed to improve the patient centeredness of information and support for Black patients in the postpartum period through a participatory design, an approach by which representative end users are involved throughout the design process [ 20 - 23 ]. While this study focused on Black postpartum patients in the United States, we believe that our findings may provide insights for improving perinatal support for patients from minority groups globally.

Challenges to Supporting Symptom Recognition and Treatment Seeking Post Partum

Patients encounter several challenges recognizing concerning postpartum symptoms. First, the initial postpartum visit occurs 6 weeks after birth, and 86% of PRD cases occur within the first 6 weeks post partum [ 24 , 25 ]. Second, most strategies for improving postpartum outcomes focus on hospital-based solutions, which rely on people recognizing symptoms and contacting a health professional [ 7 ]. Most counseling regarding the warning signs of PRD occurs during the discharge process following delivery, when people are physically exhausted from childbirth and primarily focused on infant care [ 24 ]. As such, this is a suboptimal time for patient education about postpartum risk factors. Discharge nurses report spending <10 minutes on the warning signs of postpartum issues, and most nurses could not correctly identify the leading causes of PRD, making it unlikely that their patients could recognize the warning signs [ 26 ]. There are many measures for postpartum symptom reporting, but the most common instruments focus narrowly on specific mental health issues, many of which are not specific to postpartum mental health or postpartum health–related quality of life [ 27 ]. While these are helpful measures to use in a clinic or hospital setting, they do not provide real-time decision support regarding the full spectrum of severe symptoms that may be indicative of PRD.

Suitability of Different Solutions for Supporting Symptom Monitoring

mHealth can address the need for tailored, dynamic symptom monitoring and support. The Association of Women’s Health, Obstetric, and Neonatal Nurses and the CDC have developed 1-page summaries to help patients identify the warning signs of PRD, such as the Urgent Maternal Warning Signs (UWS) [ 28 , 29 ]. These tools represent a positive step toward improving symptom management, but these solutions do not provide real-time, tailored support. Telephone-based support staffed by health professionals has been demonstrated to decrease postpartum depression and improve maternal self-efficacy [ 30 - 33 ]. However, 24-hour hotlines can be resource intensive, and people may still experience bias when accessing these services. The goal of this study was to conduct a qualitative needs assessment for the Maternal Outcome Monitoring and Support app, an mHealth system using PROs to provide decision support for postpartum symptom monitoring.

Mobile phones offer a viable, inclusive option for intervention delivery for Black people of childbearing age. In 2020, data from the Pew Research Center indicate that 83% of Black people owned smartphones, which is comparable to smartphone ownership among White people (85%). Smartphone ownership is also higher among people aged <50 years (96%), which encompasses most postpartum patients [ 34 ]. However, Black people are twice as likely as White people to be dependent on smartphones for internet access [ 35 ]. mHealth-based apps for blood pressure and weight tracking during pregnancy have demonstrated success among diverse groups, providing evidence that mHealth may be an acceptable means for symptom reporting in the target population [ 36 - 38 ].

Symptom education and PRO-based interventions have demonstrated success in improving knowledge, self-efficacy, and outcomes. Use of PROs has improved symptom knowledge, health awareness, communication with health care professionals, and prioritization of symptoms in patients with chronic disease and cancer [ 39 - 44 ]. Multiple studies have also demonstrated that educational interventions regarding expected symptoms in the postpartum period can improve self-efficacy, resourcefulness, breastfeeding practices, and mental health [ 12 , 38 , 45 - 47 ]. However, given the issues related to trust and disparities in patient-centered communication, it is critical to understand Black patients’ perspectives about how such a system should be designed and implemented.

Conceptual Model

To study the issue of supporting symptom monitoring, we combined 2 theoretical frameworks ( Figure 1 ): the common sense model of self-regulation (health behavior) by Diefenbach and Leventhal [ 48 ] and the model of human information processing (human factors engineering) by Wickens [ 49 ]. The model by Diefenbach and Leventhal [ 48 ] depicts patients as active problem solvers with a mental model of their conditions. Patients process their symptoms, both cognitively and emotionally, and then evaluate whether action is needed [ 48 ]. The patient’s mental model of their condition, personal experiences, and sociocultural factors impact processing, evaluation, and action. In the information processing model by Wickens [ 49 ], action occurs in 2 steps—selection and execution [ 48 ]. Environmental or organizational factors also affect patients’ selection of actions and whether they can execute an action. For example, a patient may suspect that they should visit the emergency room but may not go because they do not have insurance, transportation, or childcare. Our qualitative inquiry investigated how to better support symptom processing and appropriate response selection, while also uncovering the barriers to action that may need to be mitigated.

The goal of this study was to identify the design and implementation needs of an mHealth-based symptom self-monitoring and decision-support system to support Black patients in determining when to seek care from a health professional for signs of PRD in the postpartum period. This tool will support both somatic and psychological symptoms given their complex, critical, and connected presentation. We used the described conceptual model in qualitative inquiry and pragmatic intervention design to provide contributions regarding the following: (1) relevant symptom inputs for postpartum support, (2) drivers that may affect symptom processing, and (3) how the previous 2 aspects highlight the design needs for symptom self-monitoring and patient decision support. To address our study objective, we conducted semistructured interviews with postpartum Black patients, obstetrics health professionals, and mental health professionals.

The study was conducted in 3 tertiary care hospitals and affiliated clinics within the same health system in New York City. The 3 hospitals, taken together, are involved in the delivery of >14,000 babies annually. All participants were either patients who received obstetric care in the included sites or health professionals affiliated with the sites.

Eligible patients were identified by the institutions’ research informatics team using electronic health record data. First, the patients’ providers consented to their patients being contacted, and patients’ charts were reviewed by the primary obstetrician or designate to ensure that the patient was eligible for the study and that they had a delivery experience that would allow them to participate in the interview without undue stress. Next, the patients were sent an invitation to participate via the email address listed in their record. We also posted fliers in 2 high-risk, outpatient obstetric clinics.

Obstetric and mental health professionals were eligible if they were affiliated with one of the institutions in the obstetrics or mental health department. Brief presentations were given at relevant faculty meetings, and participants were contacted individually via email or through departmental listserves.

Interested participants from all groups used a link to schedule a time to speak with a researcher.

Ethical Considerations

The study was approved by the affiliated medical schools’ institutional review board (protocol number 20-08022582). All participants provided written informed consent. Study data were coded (ie, all identifying information was removed) to protect participant privacy. Each participant was compensated US $50 for their time via a physical or electronic gift card.

Study Design and Sample

The study used semistructured interviews with 3 key stakeholder groups: recent postpartum Black patients, obstetric health professionals, and mental health professionals. Eligible patients were within 12 months post partum of a live birth, self-identified their race as Black or African American, and had at least 1 somatic or psychological high-risk feature associated with their pregnancy. High-risk features included attendance at a high-risk clinic for prenatal or postnatal care, inpatient hospitalization within 12 months post partum, a prescription of an antidepressant or benzodiazepine within 12 months of the pregnancy, or a new diagnosis of depression or anxiety within 12 months of the pregnancy. High-risk clinics treated various conditions, but the most common conditions were gestational hypertension and gestational diabetes.

We adopted an interpretivist qualitative research paradigm to study patient and health professionals’ perspectives of how symptom recognition and care seeking may be better supported [ 50 ]. Our methodological orientation involved directed content analysis, adopting an abductive reasoning approach. First, we used the previously specified conceptual model to construct questions and thematically categorize responses [ 48 ]. Then, we allowed unique subthemes to inductively emerge from the data collected [ 51 ].

Interview Guide Development

Interview guides were iteratively developed by our team of researchers with expertise in obstetrics, perinatal mental health, nursing, consumer informatics, inclusive design, and qualitative methods. The guide for each stakeholder group was reviewed and piloted before enrollment of the first participant. Interview guides were tailored for patients or health professionals but followed a similar structure, based on our conceptual model ( Figure 1 ), such that participants were first asked about barriers to and facilitators of processing symptoms cognitively and emotionally (eg, Do they notice the symptom or realize its severity?), making decisions about symptoms they are experiencing (ie, When to seek help from a health professional?), and taking action on problematic symptoms. Probing questions encouraged participants to elaborate on experiential, educational, sociocultural, organizational, environmental, or health systems–level drivers of patients’ symptom management. Then, participants were asked a series of questions related to their thoughts regarding the design of the mHealth system, including how to best report symptoms, the wording of system decision support, the desired level of involvement of the obstetrics health professionals, the means for facilitating outreach to a health professional, additional information resources, and preferences for sharing information included in the system with a trusted friend or family members. During this process, obstetrics and mental health professionals were also shown a handout that outlined the draft of the symptom management algorithm for the system being developed (CDC’s UWS) and asked if they would make any changes, additions, or deletions [ 29 ]. Full interview guides are included in Multimedia Appendix 1 .

Data Collection

All interviewees provided consent electronically before the interview. A PhD-trained qualitative research expert (NB) completing a postdoctoral study in health informatics and population health conducted all the interviews via Zoom (Zoom Video Communications) or telephone. Participants had the option to request an in-person interview, but none of them chose this option. Interviews lasted 30 to 60 minutes and were audio recorded. We explicitly described the study objectives to each participant before the interview. Following the interview, participants completed a demographics survey electronically. All electronic survey information was collected using REDCap (Research Electronic Data Capture; Vanderbilt University).

Data Preparation and Analysis

Audio recordings were converted into transcripts using an electronic software (NVivo Transcription; QSR International) and manually checked for accuracy by a study team member who did not conduct the initial interviews. We completed all data analyses using NVivo (versions 12 and 13), but we manually analyzed the data and did not use computer-aided techniques (eg, computerized emotion detection or autocoding).

Data were analyzed using thematic analysis and the constant comparative process [ 51 - 53 ]. Specifically, each analyst open coded the transcripts, by coding segments that pertained to the research questions, as opposed to coding all words and phrases. We used thematic analysis to detect the common and divergent needs for postpartum symptom monitoring. We chose this method over other approaches such as grounded theory or sentiment analysis because our needs were pragmatic to solution design, and we were not attempting to establish theory, describe phenomena, or represent collective feeling about a topic.

The first deductive analysis was conducted using an initial theoretical model derived from the common sense model by Diefenbach and Leventhal [ 48 ] and the model of human information processing by Wickens [ 49 ] ( Figure 1 ). To promote reliability, 2 coders in addition to the interviewer were involved in the analysis, and each transcript was first analyzed independently by at least 2 people (NB, SW, or SNdR), followed by meetings to resolve discrepancies based on consensus coding. The analysis team created initial codes based on the conceptual model and added new items to the codebook inductively (ie, post hoc instead of a priori, as they arose in the data). The team used NVivo to maintain a working codebook of themes, definitions, and relevant quotes derived from the data. The codebook was periodically presented to coinvestigators with expertise in obstetrics and perinatal psychiatry to improve external validity [ 51 , 52 ]. The sufficiency of sample size was assessed according to the theoretical saturation of themes encountered, specifically based on the need to add additional subthemes to the codebook [ 54 , 55 ]. After all the transcripts had been coded, at least 2 members of the coding team reviewed the data code by code to ensure that meaning remained consistent throughout the analysis and to derive key emerging themes [ 51 ].

Participant Characteristics

This study included 36 participants—15 (42%) obstetrics health professionals, 10 (28%) mental health professionals, and 11 (31%) recent postpartum Black patients. Table 1 presents the self-reported demographic information. As shown, 19% (7/36) of the health professionals and 11% (4/36) of the patients had missing data (ie, did not complete the questionnaire). Participants could also selectively choose not to answer questions. “Other” affiliations were possible for health professionals because those who had a secondary affiliation with one of the included sites but primary affiliation with another organization were eligible.

a N/A: not applicable.

b Health professionals’ self-reported role of resident psychiatrist, chief resident in psychiatry, psychologist, and patient care director was combined into the other category for analysis purposes.

Structure of Themes

Our initial theoretical model, derived from the common sense model by Diefenbach and Leventhal [ 48 ] and the model of human information processing by Wickens [ 49 ] ( Figure 1 ), described that patients experience some inputs (psychological and somatic symptoms of PRD). Then, there is a series of drivers that affect how patients cognitively and emotionally process (eg, notice and realize symptom severity), make decisions about, and act on symptoms they are experiencing. The nature of these symptoms, how they are processed, how decisions are made, and how they are acted upon then drive a conversation regarding the design needs for symptom monitoring and decision support for PRD. The emerging themes were organized into the following categories: (1) symptoms of PRD; (2) drivers of processing, decision-making, and action; and (3) design needs for a symptom-reporting and decision-support system. Quotes are labeled with study-specific identifiers: OB denotes obstetric health professional, MHP denotes mental health professional, and PT denotes patient.

Inputs: Psychological and Somatic Symptoms of PRD

Concerning and routine symptoms were reported both from a psychological and somatic perspective. Sometimes, the distinction between routine and concerning symptoms was clear. Other times, it was more challenging to differentiate routine versus concerning symptoms particularly because they were related to psychological health. Mental health professionals also noted the challenge that routine symptoms can progress to something more serious over time:

In my mind, like normal becomes abnormal, when there is any kind of functioning [loss] that like withstands two to three weeks. [MHP 04]

We really hear a lot about postpartum depression and stuff...A lot of women think...postpartum depression is you just don’t want to. You don’t have it. You go into depression where you can’t take care of your child and you don’t want to hold your child. You don’t feel connected to your child. And I learned...it can be so many different things. [PT 09]

A clear distinction was not always present between psychological and somatic symptoms:

If someone...has pain in their chest or shortness of breath, the first thing you want to think about is it sort of like clots and other kind of physiologic reasons for that. Those are also very implicated and sort of obviously [associated with] panic attacks and anxiety. So, I think though those symptoms are also relevant of physical symptoms, [they] are also relevant for mental health. [MHP 05]

Drivers of Processing, Decision-Making, and Action Based on the Symptoms Experienced

Several drivers were reported to affect symptom processing (ie, whether they noticed the symptom and its severity), patients’ capacity to decide what should be done (ie, make decisions), and whether they were able to act on concerning symptoms ( Table 2 ).

Table 2 presents exemplary quotes for emerging themes under a single driver, but many quotes were coded under multiple drivers in our analysis process. The following passage, for example, highlights how self-perception, sociocultural concerns, and the health system can overlap to present a complex set of factors that may prevent women from receiving the care they need for the symptoms they are experiencing:

A lot of times I think that does get overlooked because people feel like, well, you’re OK, you’re fine. But what research shows us is that especially for Black women, it really doesn’t matter how much money you make or your income level, like our postpartum and perinatal health outcomes are the same across the board, which is really detrimental. So, yeah, I think they get overlooked because of that. I think they get overlooked or we get overlooked in the health care system. But I also think we get overlooked by our family and friends because we’re the strong ones. So, if anybody can deal with this, it’s you. [MHP 10]

a MHP: mental health professional.

b PT: patient.

c OB: obstetric health professional.

Design Needs for a Symptom-Reporting and Decision-Support System

Obstetric health professionals, mental health professionals, and patients discussed multiple needs for improved PRD symptom reporting and decision support. The key design requirements are embedded and italicized in the following text.

Participants generally agreed that although the proposed system focuses on postpartum symptoms, it would be advantageous to introduce the system during pregnancy, particularly in the third trimester :

You have to reach women before they give birth. They might look, they might not look, they might look at it and be concerned. But then they might forget about it and not have time to call. Those first six weeks are really chaotic. [MHP 06]

I think in the third trimester would be great because often we don’t really have anything to talk about in the office. It’s very quick visits like blood pressure and you’re still pregnant and we’re just waiting. And so, I think and they start to have a lot of questions about like, well, when I get home and how’s this going to go? So, I think that time is a good time. We’re all kind of just waiting for labor to happen or full term to get there, and this kind of gives them something to feel like they can prepare for. [OB 08]

Patients were open to reminders regarding entering symptoms they were experiencing, and participants described a desire for just-in-time symptom reporting and decision support, so that they could get quick feedback as they were experiencing the symptoms:

When people get home so much in their life has changed. And it’s probably a very hectic time. So maybe I think that’s a great idea reaching out again, either a few days or a week later to make sure they’re really able to use it and engage with it to the extent that’s helpful to them. [OB 02]

I think it would be a good idea to have like a system where you can report whenever you want. [PT 03]

I think for me, I would say in the moment. But then also having something at the end of every week to just, you know, to check in with yourself. I think that would be good as well. [PT 09]

In addition to considerations about how symptoms would be recorded, participants stressed the importance of the wording of the decision-support messages that patients receive . For messages that inform the patient that their symptom did not seem to require immediate medical attention, it was important to ensure that the patient still felt heard and that they did not leave the interaction feeling stuck with nothing to do regarding a symptom that was concerning to them:

Reframe the message. You know...we apologize that you were experiencing this. We just want to reassure you that this is normal. [PT 01]

[You] don’t want to make anyone feel like their feelings aren’t valid because that’s a horrible thing, especially in health care, especially if a person is convinced that something is wrong with them and you’re telling them that it’s normal and is perfectly fine. So, in that situation, I would just, depending on what the issue is, I would also share information of what to look out for. [PT 05]

The first thing is that it’s normal, but also something that you want to be able to do for comfort. For me, I don’t have to do too much, especially if I’m having anxiety, like if I get a text back that says here are some things you can do in this very moment to handle it. And then also, here are some links or information that you can also look up. [PT 09]

In the events where a concerning symptom was reported and it was recommended that the patient should reach out to a health professional, importance of conveying a sense of urgency without scaring the patient:

You don’t want to scare people, but it’s kind of hard to get around that when something is serious, and you don’t want to dumb it down. [PT 01]

Participants wanted multiple, easy-to-do methods for connecting with their health professional team, including having the number to call pop up, scheduling a time for someone to call them, and being able to start a live web-based chat:

I like all the options, especially that form or chat you can have like, you know, those online chat where like you really chatting with someone for those who like the type. I’m the type of person I just want to make a phone call, right? So, like for me, [it] will be a call. Maybe say maybe if it’s five, five or ten minutes then that will be great. Like especially, it’s going to make me feel like, OK, there’s someone out there that will care about my health. [PT 06]

However, participants noted that they would prefer not to use a symptom-reporting and decision-support tool, but instead reach out directly via phone if they were experiencing issues.

Participants, particularly mental health professionals, described a need for improved nuance or details regarding the different psychological symptoms patients could experience that are indicative of severe mental health issues:

Thoughts of hurting yourself or someone else is a good one...I would say I would add difficulty bonding. It would add something about not being able to sleep, even if you could sleep, you know, like or your anxiety that doesn’t go away, that changes your behavior. So, it changes the way that you interact with the baby or kind of do childcare. I guess I would want to say something about. psychotic thoughts, like fear that someone else may be hurting you or...recurrent worries or anxieties that don’t go away. [MHP 02]

Patients had differing opinions regarding whether the system should be integrated with other health technologies, particularly the patient portal:

I love the patient portal. I was able to be traveling to reach out to my OB, to reach out to all, you know, the nurses and stuff like that and just experience things that I needed. [PT 09]

I feel like...it’s an integral part of my medical history. So, even if it may seem somewhat insignificant for whatever reason, I would still want to have access. [PT 09]

I didn’t find it [the patient portal] very helpful... [PT 03]

On the basis of the feedback from health professionals that it may be challenging for postpartum patients to process and recognize certain symptoms, especially those related to mental health, we explored whether patient participants would be open to sharing educational information about symptoms to expect (rather than sharing the actual symptom reports) with trusted friends or family members. Similar to other design considerations, results were mixed, but it seemed helpful to have a patient-driven option for sharing symptom-related educational information with chosen friends or family members :

I think that there’s so much going on it would help to have someone with a different perspective equipped with this information. [PT 02]

There’s a lot of shame that comes with this. I’m not sure people would actually want other people to know. I can’t speak for the majority, but I didn’t really want people to know because I don’t want the kind of energy that came with people knowing. [PT 05]

We also discovered the competing needs of balancing the patient’s desire for their health professionals to be involved in symptom reporting with the need to avoid significant increases to health professional workload :

I sort of wonder from the health care provider perspective, how involved is the provider in that in the app? Like, do they get like a PDF of all the information? Is that more work for the provider? How does the provider interpret that data? [MHP 03]

I feel like they [the health professional] should be super involved. Especially because I’m not just going off of my experience because, you know, I don’t want to feel like they’re not really like I’m experiencing. And so, it’s scaring me. So, I just want to know that, you know, you’re hands on with everything. [PT 01]

Finally, the participants desired information beyond PRD symptoms to entice them to use the system . They were supportive of including various types of information, such as breastfeeding support resources, milestones and information regarding their child, other websites and apps with trusted maternal and child health information, further support resources for how they feel mentally, and links to social services (eg, food, housing, or other assistance).

Principal Findings

In this qualitative study, we interviewed obstetric health professionals, mental health professionals, and Black postpartum patients. Our findings helped to identify the design and implementation needs of an mHealth-based, symptom self-monitoring and decision-support system designed to support Black patients in determining when to seek care from a health professional for signs of PRD in the postpartum period. We encountered important findings related to (1) inputs, including psychological and somatic symptoms; (2) drivers of processing, decision-making, and action based on the symptoms experienced; and (3) design needs for a symptom-reporting and decision-support system. We have discussed how our findings may be helpful to other postpartum populations as well as the implications of our study for patient decision-support in other clinical settings.

First, our findings related to symptom inputs revealed the challenges caused by the overlapping presentation of somatic and psychological symptoms. This provides support for our approach of including psychological and somatic issues in a single app, particularly given that mental health conditions are a leading cause of PRD. A 2021 review found 15 PRO measures for assessing postpartum recovery. The measures typically focused on mental health or health-related quality of life, but few included both psychological and somatic outcomes, and none were targeted for PRD, such as the system [ 56 ].

Moreover, related to symptom inputs, we found that current tools for pinpointing severe symptoms, such as the CDC’s UWS did not provide sufficient nuance for concerning psychological symptoms. Symptom-reporting tools for PRD will either need to consider incorporating structured assessments, such as the Edinburgh Postnatal Depression Scale (EPDS) [ 56 ], or incorporating additional symptoms. The latter approach may have advantages as the EPDS focuses on depression (while providing subscales for anxiety) and PROs evaluated for use with anxiety disorders have limitations [ 57 ]. Furthermore, the EPDS has been validated in in-person laboratory settings but not in community settings or for web-based entry [ 58 ]. We must also consider how mistrust in the health system may lead to less truthful answers. Issues expressed around stigma related to mental health indicate that the way in which these symptoms are elicited may require further assessment to promote the normalcy of the symptoms and improve candid reporting. Technology-based approaches for supporting perinatal mental health have been described as uniformly positive but having limited evidence for use [ 59 ], suggesting that further exploration is needed in this area, also considering how adding somatic issues may be perceived by patients.

Second, there were several drivers that affected symptom processing, decision-making, and action that cannot typically be solved through a symptom-reporting and decision-support system. Challenges related to self-perception and lack of experience or expectations may be addressed based on the wording for how the symptoms are elicited and by providing concise, easy-to-understand depictions of what should be expected versus what are the causes for concern. However, many of the other issues described related to sociocultural, financial, and environmental factors and the health systems’ systemic racism issues cannot be addressed directly in a simple PRO-based app and decision-support system. Directly addressing these issues will likely require more systematic, multipronged approaches. Therefore, it seems advisable to couple patient decision-support aids with other social support interventions for perinatal health [ 60 , 61 ].

Drivers of processing, decision-making, and action are still important contextual elements to be considered in the design of the system. Another study tailoring an mHealth app for Latina patients to support health during pregnancy also found it important to address issues related to financial barriers, social support, health care accessibility, and cultural differences [ 62 ]. Our best attempt to address these issues may be to promote information transparency and inclusive design. For example, there may be a “frequently asked questions” section of an app, where patients can explore things such as supportive resources for childcare while they seek medical attention or information they may show their friends or family members regarding postpartum symptoms of concern. The system may also use common human-computer interaction principles, such as information filtering [ 63 ] and organizing the suggested resources (eg, for mental health care) based on whether they accept the patient’s insurance. The built environment can also be changed through the system, but it may offer mechanisms for remote monitoring, such as telemedicine-based support or linking the system to a blood pressure cuff, when clinically appropriate [ 64 , 65 ]. As noted, the system obviously cannot address issues related to systematic racism directly [ 66 ]. Instead, we used a participatory design approach, with the hope that the nature of the information presented may be more patient centered, acceptable, and better aligned with the beliefs and values of Black patients [ 67 ]. Issues related to systematic racism have commonly been described in the US health care system, but structural inequities also exist on a global scale. Future studies should investigate how our findings regarding design needs may extend to other minoritized perinatal patient groups.

A systematic review of patient decision aids for socially disadvantaged populations across clinical settings found that such tools can improve knowledge, enhance patient-clinician communication, and reduce decisional conflict [ 68 ]. However, descriptions of patient decision aids focus on the type of tool (eg, paper vs digital), how it was delivered, when it was delivered, and by whom, as opposed to describing the content the aid provides. Therefore, it is challenging to determine how other decision-support tools have addressed information regarding environmental, financial, or health system–level factors that may affect care seeking based on the decision aid. Some tools seem to address sociocultural needs by tailoring to the target population, but the aforementioned systematic review did not find differential effects on outcomes when tools were tailored versus not tailored [ 16 ]. Future studies on patient decision aids may benefit from including non-symptom related information. Providing appropriate informational support may involve a deeper study of the systemic needs that patients may have, even if these needs may not directly be addressed by the decision aid.

Third, descriptions of the design needs for PRD symptom monitoring revealed that there is likely not a one-size-fits-all solution related to reminders, involvement of health professionals, and how the tool is incorporated with other systems (eg, the patient portal). “User control and freedom” and “flexibility of use” are two of the key items in commonly used heuristics for user interface design [ 69 ]; therefore, it is important to include options for customization and varied but safe pathways for interaction with the proposed system. For example, some participants described that they may not be likely to access the symptom-reporting system through the patient portal. Although there may be safety and convenience-related reasons for having the system as part of the patients’ medical record, if the patient chooses, the system could, on the front end, appear more like a stand-alone app than something that must be accessed through the patient portal. Patients also had varying opinions related to how they may want to reach out to a health professional if a problematic symptom was reported. These preferences may differ from instance to instance; therefore, it is helpful to ensure that patients have a choice regarding how to reach out, but system designers must also create workflows with feedback loop, so that patients who are reporting problematic symptoms are not missed (ie, if patients do not reach out themselves, they never receive attention). Patient-level customizations and options for interaction also respects patients as individuals and may promote patient-centered interactions.

Furthermore, related to design needs, participants indicated that the wording of the decision-support messages was critical. Specifically, for reports that did not include currently urgent symptoms, it was important that the message still conveyed support and validation, clarified that the patient could still reach out for help, and provided additional means for managing their symptoms, so the patient did not feel frustrated by their report [ 70 ]. Regarding messages that recommended patients to reach out to their health professional team, it was crucial to note what the symptom meant (eg, what kind of disease it could indicate), encourage the patient to reach out without increasing anxiety, and provide different avenues for easy outreach. Going forward, we plan to incorporate the aforementioned elements into the messages built into the system. We will then complete additional acceptance and comprehension testing with a larger sample of postpartum patients. These findings also indicate that care must be taken in translating such tools, and the translated materials should be reviewed with the target end user groups before implementation. This may mitigate unintended consequences or inadvertent inclusion of language that does not support the needs of minoritized groups.

Strengths and Limitations

Our study highlighted the limitations and areas that would benefit from further exploration. First, our study involved recruitment sites that were within a single health system in New York City. Second, while we achieved thematic saturation of qualitative themes (a means for determining sample sufficiency in qualitative studies) [ 54 , 55 ], our conclusions are based on a sample of 36 participants from 3 stakeholder groups. Third, given the documented disparities, we deliberately focused on the needs of Black postpartum patients, but this may not represent the needs of the postpartum patients of other races. Furthermore, our sample should not be viewed as encompassing the opinions of all Black postpartum patients. Our findings revealed the need for individual customization and varied interaction patterns on a case-by-case basis. Fourth, all interviews were conducted remotely (via Zoom or telephone), which can have effects on the interaction. On the one hand, it may be harder to connect with the interviewee, and on the other hand, people may feel more anonymous and comfortable with sharing information. Finally, although we attempted to promote external validity through the review of the coding scheme by a subject matter expert, we did not have the opportunity to perform triangulation of the findings by returning the results to participants. To address these limitations, it would be beneficial to survey a larger group of postpartum patients, powered to assess the differences based on race and ethnicity. This would allow us to come to a stronger consensus regarding design choices, assess whether there are differences in design needs or preferences, and gain feedback from patients in areas outside New York City. Future studies may also explore how other underserved groups, such as those with limited English proficiency, may benefit from tailored symptom self-monitoring and decision support.

Conclusions

In this qualitative study regarding postpartum symptom monitoring and decision support, we found that the current structured reporting measures do not include the combination of somatic and psychological symptoms that may be indicative of severe outcomes in the postpartum period. While not explicitly related to symptom reporting and decision support, patient decision aids, particularly those focusing on minoritized groups, should consider how the aids may be coupled with other structural support interventions or, at least, information about how other resources may be accessed. As stated in the commonly accepted design heuristics, we also found that user control and freedom unsurprisingly remain important for a patient decision-support aid for Black postpartum patients. Finally, decision aid–related phrases must take care to convey urgency without inducing anxiety when action may be indicated and consider respect and empathy for the patients’ symptoms when action may not be indicated to ensure that they do not feel unheard and are empowered to report new or worsening symptoms.

Acknowledgments

This study was supported by the National Institute on Minority Health and Health Disparities (K99MD015781; principal investigator: NB).

Data Availability

The data sets generated and analyzed during this study are not publicly available due to institutional review board regulations but are available from the corresponding author on reasonable request.

Authors' Contributions

NB conceptualized the study and acquired funding under the advisement of RBK, LER, AH, RMC, and JSA. NB collected the data. NB, SW, and SNdR analyzed the data with input from all other authors. ECP completed the literature review and descriptive analysis of participants’ characteristics. NB drafted the paper and received substantial inputs from all other authors.

Conflicts of Interest

LER is an Up to Date contributor and an advisory board member for the New English Journal of Medicine, and Contemporary OB/GYN. She has also been a speaker for Medscape is an an expert reviewer for Pfizer on the RSV Vaccine. AH is an Up to Date contributor, a co-founder and medical consultant for Iris Ob Health, and a consultant for Progyny.

Semistructured interview guide questions for patients and health professionals.

• Howell EA, Egorova NN, Janevic T, Brodman M, Balbierz A, Zeitlin J, et al. Race and ethnicity, medical insurance, and within-hospital severe maternal morbidity disparities. Obstet Gynecol. Feb 2020;135(2):285-293. [ FREE Full text ] [ CrossRef ] [ Medline ]
• Wisner KL, Sit DK, McShea MC, Rizzo DM, Zoretich RA, Hughes CL, et al. Onset timing, thoughts of self-harm, and diagnoses in postpartum women with screen-positive depression findings. JAMA Psychiatry. May 01, 2013;70(5):490-498. [ FREE Full text ] [ CrossRef ] [ Medline ]
• Pregnancy-related deaths: data from maternal mortality review committees in 36 US States, 2017-2019. Centers for Disease Control and Prevention. URL: https://www.cdc.gov/reproductivehealth/maternal-mortality/erase-mm/data-mmrc.html [accessed 2022-11-20]
• Pregnancy mortality surveillance system. Centers for Disease Control and Prevention. 2020. URL: https://tinyurl.com/356dwufh [accessed 2024-03-23]
• Creanga AA, Syverson C, Seed K, Callaghan WM. Pregnancy-related mortality in the United States, 2011-2013. Obstet Gynecol. Aug 2017;130(2):366-373. [ FREE Full text ] [ CrossRef ] [ Medline ]
• Home page. World Health Organization. URL: https://www.who.int/ [accessed 2024-03-21]
• Troiano NH, Witcher PM. Maternal mortality and morbidity in the United States: classification, causes, preventability, and critical care obstetric implications. J Perinat Neonatal Nurs. 2018;32(3):222-231. [ CrossRef ] [ Medline ]
• Creanga AA, Berg CJ, Ko JY, Farr SL, Tong VT, Bruce FC, et al. Maternal mortality and morbidity in the United States: where are we now? J Womens Health (Larchmt). Jan 2014;23(1):3-9. [ FREE Full text ] [ CrossRef ] [ Medline ]
• Campbell-Grossman C, Brage Hudson D, Keating-Lefler R, Ofe Fleck M. Community leaders' perceptions of single, low-income mothers' needs and concerns for social support. J Community Health Nurs. Dec 2005;22(4):241-257. [ CrossRef ] [ Medline ]
• New York State maternal mortality review report on pregnancy-associated deaths in 2018. New York State Department of Health. 2018. URL: https://www.health.ny.gov/community/adults/women/docs/maternal_mortality_review_2018.pdf [accessed 2024-03-23]
• Suplee PD, Kleppel L, Santa-Donato A, Bingham D. Improving postpartum education about warning signs of maternal morbidity and mortality. Nurs Womens Health. Dec 2017;20(6):552-567. [ CrossRef ] [ Medline ]
• Howell EA, Bodnar-Deren S, Balbierz A, Parides M, Bickell N. An intervention to extend breastfeeding among black and Latina mothers after delivery. Am J Obstet Gynecol. Mar 2014;210(3):239.e1-239.e5. [ FREE Full text ] [ CrossRef ] [ Medline ]
• Hall WJ, Chapman MV, Lee KM, Merino YM, Thomas TW, Payne BK, et al. Implicit racial/ethnic bias among health care professionals and its influence on health care outcomes: a systematic review. Am J Public Health. Dec 2015;105(12):e60-e76. [ CrossRef ]
• Stepanikova I, Mollborn S, Cook KS, Thom DH, Kramer RM. Patients' race, ethnicity, language, and trust in a physician. J Health Soc Behav. Dec 24, 2006;47(4):390-405. [ CrossRef ] [ Medline ]
• Schwei RJ, Kadunc K, Nguyen AL, Jacobs EA. Impact of sociodemographic factors and previous interactions with the health care system on institutional trust in three racial/ethnic groups. Patient Educ Couns. Sep 2014;96(3):333-338. [ FREE Full text ] [ CrossRef ] [ Medline ]
• Blair IV, Steiner JF, Fairclough DL, Hanratty R, Price DW, Hirsh HK, et al. Clinicians' implicit ethnic/racial bias and perceptions of care among Black and Latino patients. Ann Fam Med. 2013;11(1):43-52. [ FREE Full text ] [ CrossRef ] [ Medline ]
• Ayanian JZ, Zaslavsky AM, Guadagnoli E, Fuchs CS, Yost KJ, Creech CM, et al. Patients' perceptions of quality of care for colorectal cancer by race, ethnicity, and language. J Clin Oncol. Sep 20, 2005;23(27):6576-6586. [ CrossRef ] [ Medline ]
• Reyna VF, Nelson WL, Han PK, Dieckmann NF. How numeracy influences risk comprehension and medical decision making. Psychol Bull. Nov 2009;135(6):943-973. [ FREE Full text ] [ CrossRef ] [ Medline ]
• Language use in the United States: 2011. United States Census Bureau. 2011. URL: https://www.census.gov/library/publications/2013/acs/acs-22.html [accessed 2024-03-23]
• Valdez RS, Brennan PF. Exploring patients' health information communication practices with social network members as a foundation for consumer health IT design. Int J Med Inform. May 2015;84(5):363-374. [ CrossRef ] [ Medline ]
• Valdez RS, Gibbons MC, Siegel ER, Kukafka R, Brennan PF. Designing consumer health IT to enhance usability among different racial and ethnic groups within the United States. Health Technol. Jul 13, 2012;2(4):225-233. [ CrossRef ]
• Valdez RS, Holden RJ. Health care human factors/ergonomics fieldwork in home and community settings. Ergon Des. Oct 2016;24(4):4-9. [ FREE Full text ] [ CrossRef ] [ Medline ]
• Valdez RS, Holden RJ, Novak LL, Veinot TC. Transforming consumer health informatics through a patient work framework: connecting patients to context. J Am Med Inform Assoc. Jan 2015;22(1):2-10. [ FREE Full text ] [ CrossRef ] [ Medline ]
• Bingham D, Suplee PD, Morris MH, McBride M. Healthcare strategies for reducing pregnancy-related morbidity and mortality in the postpartum period. J Perinat Neonatal Nurs. 2018;32(3):241-249. [ CrossRef ] [ Medline ]
• Creanga AA, Berg CJ, Syverson C, Seed K, Bruce FC, Callaghan WM. Pregnancy-related mortality in the United States, 2006-2010. Obstet Gynecol. Jan 2015;125(1):5-12. [ CrossRef ] [ Medline ]
• Suplee PD, Bingham D, Kleppel L. Nurses' knowledge and teaching of possible postpartum complications. MCN Am J Matern Child Nurs. 2017;42(6):338-344. [ CrossRef ] [ Medline ]
• O'Byrne LJ, Bodunde EO, Maher GM, Khashan AS, Greene RM, Browne JP, et al. Patient-reported outcome measures evaluating postpartum maternal health and well-being: a systematic review and evaluation of measurement properties. Am J Obstet Gynecol MFM. Nov 2022;4(6):100743. [ FREE Full text ] [ CrossRef ] [ Medline ]
• Adler A, Conte TF, Illarraza T. Improvement of Postpartum Nursing Discharge Education Through Adaptation of AWHONN’s Post-Birth Education Program. J Obstet Gynecol Neonatal Nurs. Jun 2019;48(3):S54. [ CrossRef ]
• Urgent maternal warning signs. Centers for Disease Control and Prevention. URL: https://www.cdc.gov/hearher/maternal-warning-signs/index.html [accessed 2022-12-11]
• Hannan J. APN telephone follow up to low-income first time mothers. J Clin Nurs. Jan 30, 2013;22(1-2):262-270. [ CrossRef ] [ Medline ]
• Dennis CL, Kingston D. A systematic review of telephone support for women during pregnancy and the early postpartum period. J Obstet Gynecol Neonatal Nurs. May 2008;37(3):301-314. [ CrossRef ] [ Medline ]
• Letourneau N, Secco L, Colpitts J, Aldous S, Stewart M, Dennis CL. Quasi-experimental evaluation of a telephone-based peer support intervention for maternal depression. J Adv Nurs. Jul 23, 2015;71(7):1587-1599. [ CrossRef ] [ Medline ]
• Shamshiri Milani H, Azargashb E, Beyraghi N, Defaie S, Asbaghi T. Effect of telephone-based support on postpartum depression: a randomized controlled trial. Int J Fertil Steril. 2015;9(2):247-253. [ FREE Full text ] [ CrossRef ] [ Medline ]
• Mobile fact sheet. Pew Research Center. URL: https://www.pewresearch.org/internet/fact-sheet/mobile/ [accessed 2023-02-22]
• Anderson M. Digital divide persists even as lower-income Americans make gains in tech adoption. Pew Research Center. URL: https:/​/www.​urbanismnext.org/​resources/​digital-divide-persists-even-as-lower-income-americans-make-gains-in-tech-adoption [accessed 2024-03-23]
• Drexler K, Cheu L, Donelan E, Kominiarek M. 415: Remote self-monitoring of perinatal weight and perinatal outcomes in low-risk women. Am J Obstet Gynecol. Jan 2020;222(1):S272-S273. [ CrossRef ]
• Marko KI, Ganju N, Krapf JM, Gaba ND, Brown JA, Benham JJ, et al. A mobile prenatal care app to reduce in-person visits: prospective controlled trial. JMIR Mhealth Uhealth. May 01, 2019;7(5):e10520. [ FREE Full text ] [ CrossRef ] [ Medline ]
• Vernon MM, Yang FM. Implementing a self-monitoring application during pregnancy and postpartum for rural and underserved women: a qualitative needs assessment study. PLoS One. Jul 19, 2022;17(7):e0270190. [ FREE Full text ] [ CrossRef ] [ Medline ]
• Berry DL, Blumenstein BA, Halpenny B, Wolpin S, Fann JR, Austin-Seymour M, et al. Enhancing patient-provider communication with the electronic self-report assessment for cancer: a randomized trial. J Clin Oncol. Mar 10, 2011;29(8):1029-1035. [ FREE Full text ] [ CrossRef ] [ Medline ]
• Lordon RJ, Mikles SP, Kneale L, Evans HL, Munson SA, Backonja U, et al. How patient-generated health data and patient-reported outcomes affect patient-clinician relationships: a systematic review. Health Informatics J. Dec 20, 2020;26(4):2689-2706. [ FREE Full text ] [ CrossRef ] [ Medline ]
• Todd BL, Feuerstein M, Gehrke A, Hydeman J, Beaupin L. Identifying the unmet needs of breast cancer patients post-primary treatment: the Cancer Survivor Profile (CSPro). J Cancer Surviv. Jun 29, 2015;9(2):137-160. [ CrossRef ] [ Medline ]
• Basch E, Deal AM, Dueck AC, Scher HI, Kris MG, Hudis C, et al. Overall survival results of a trial assessing patient-reported outcomes for symptom monitoring during routine cancer treatment. JAMA. Jul 11, 2017;318(2):197-198. [ FREE Full text ] [ CrossRef ] [ Medline ]
• Basch E, Deal AM, Kris MG, Scher HI, Hudis CA, Sabbatini P, et al. Symptom monitoring with patient-reported outcomes during routine cancer treatment: a randomized controlled trial. J Clin Oncol. Feb 20, 2016;34(6):557-565. [ FREE Full text ] [ CrossRef ] [ Medline ]
• Denis F, Basch E, Septans A, Bennouna J, Urban T, Dueck AC, et al. Two-year survival comparing web-based symptom monitoring vs routine surveillance following treatment for lung cancer. JAMA. Jan 22, 2019;321(3):306-307. [ FREE Full text ] [ CrossRef ] [ Medline ]
• Howell EA, Balbierz A, Wang J, Parides M, Zlotnick C, Leventhal H. Reducing postpartum depressive symptoms among black and Latina mothers: a randomized controlled trial. Obstet Gynecol. May 2012;119(5):942-949. [ FREE Full text ] [ CrossRef ] [ Medline ]
• Ngai FW, Chan SW, Ip WY. The effects of a childbirth psychoeducation program on learned resourcefulness, maternal role competence and perinatal depression: a quasi-experiment. Int J Nurs Stud. Oct 2009;46(10):1298-1306. [ CrossRef ] [ Medline ]
• Shorey S, Chan SW, Chong YS, He HG. A randomized controlled trial of the effectiveness of a postnatal psychoeducation programme on self-efficacy, social support and postnatal depression among primiparas. J Adv Nurs. Jun 15, 2015;71(6):1260-1273. [ CrossRef ] [ Medline ]
• Diefenbach MA, Leventhal H. The common-sense model of illness representation: theoretical and practical considerations. J Soc Distress Homeless. Jul 07, 2016;5(1):11-38. [ CrossRef ]
• Wickens CD. Multiple resources and mental workload. Hum Factors. Jun 2008;50(3):449-455. [ CrossRef ] [ Medline ]
• Gadamer HG. Philosophical Hermeneutics. Oakland, CA. University of California Press; 1976.
• Saldana J. The Coding Manual for Qualitative Researchers. Thousand Oaks, CA. Sage Publications; 2012.
• Huberman AM, Miles M, Saldana J. Qualitative Data Analysis: A Methods Sourcebook. Thousand Oaks, CA. Sage Publications; 2014.
• Pope C, Ziebland S, Mays N. Analysing qualitative data. In: Pope C, Mays N, editors. Qualitative Research in Health Care. Hoboken, NJ. John Wiley & Sons; 2006;63-81.
• Fusch PI, Ness LR. Are we there yet? Data saturation in qualitative research. Qual Rep. Sep 8, 2015;20(9):1408-1416. [ FREE Full text ] [ CrossRef ]
• Morse JM. The significance of saturation. Qual Health Res. Jul 01, 2016;5(2):147-149. [ CrossRef ]
• Sultan P, Sharawi N, Blake L, Ando K, Sultan E, Aghaeepour N, et al. Use of patient-reported outcome measures to assess outpatient postpartum recovery: a systematic review. JAMA Netw Open. May 03, 2021;4(5):e2111600. [ FREE Full text ] [ CrossRef ] [ Medline ]
• O'Carroll J, Ando K, Yun R, Panelli D, Nicklin A, Kennedy N, et al. A systematic review of patient-reported outcome measures used in maternal postpartum anxiety. Am J Obstet Gynecol MFM. Sep 2023;5(9):101076. [ CrossRef ] [ Medline ]
• Cox J. Thirty years with the Edinburgh postnatal depression scale: voices from the past and recommendations for the future. Br J Psychiatry. Mar 18, 2019;214(3):127-129. [ CrossRef ] [ Medline ]
• Novick AM, Kwitowski M, Dempsey J, Cooke DL, Dempsey AG. Technology-based approaches for supporting perinatal mental health. Curr Psychiatry Rep. Sep 23, 2022;24(9):419-429. [ FREE Full text ] [ CrossRef ] [ Medline ]
• Guy Jr GP, Adams EK, Redd SK, Dunlop AL. Effects of Georgia's Medicaid family planning waiver on pregnancy characteristics and birth outcomes. Womens Health Issues. Dec 15, 2023. [ CrossRef ] [ Medline ]
• Zimmermann K, Haen LS, Desloge A, Handler A. The role of a local health department in advancing health equity: universal postpartum home visiting in a large urban setting. Health Equity. Oct 01, 2023;7(1):703-712. [ FREE Full text ] [ CrossRef ] [ Medline ]
• Castillo AF, Davis AL, Krishnamurti T. Adapting a pregnancy app to address disparities in healthcare access among an emerging Latino community: qualitative study using implementation science frameworks. Research Square. Preprint posted online April 27, 2022. [ FREE Full text ] [ CrossRef ]
• Shneiderman B. The eyes have it: a task by data type taxonomy for information visualizations. In: Bederson BB, Shneiderman B, editors. The Craft of Information Visualization: Readings and Reflections. Burlington, MA. Morgan Kaufmann; 2003;364-371.
• White KM, Williamson C, Bergou N, Oetzmann C, de Angel V, Matcham F, et al. A systematic review of engagement reporting in remote measurement studies for health symptom tracking. NPJ Digit Med. Jun 29, 2022;5(1):82. [ FREE Full text ] [ CrossRef ] [ Medline ]
• Walsh S, Golden E, Priebe S. Systematic review of patients' participation in and experiences of technology-based monitoring of mental health symptoms in the community. BMJ Open. Jun 21, 2016;6(6):e008362. [ FREE Full text ] [ CrossRef ] [ Medline ]
• Davidson KW, Mangione CM, Barry MJ, Cabana MD, Caughey AB, Davis EM, et al. Actions to transform US preventive services task force methods to mitigate systemic racism in clinical preventive services. JAMA. Dec 21, 2021;326(23):2405-2411. [ CrossRef ] [ Medline ]
• Im EO, Chee W, Hu Y, Kim S, Choi H, Hamajima Y, et al. What to consider in a culturally tailored technology-based intervention? Comput Inform Nurs. Sep 2018;36(9):424-429. [ FREE Full text ] [ CrossRef ] [ Medline ]
• Yen RW, Smith J, Engel J, Muscat DM, Smith SK, Mancini J, et al. A systematic review and meta-analysis of patient decision aids for socially disadvantaged populations: update from the international patient decision aid standards (IDPAS). Med Decis Making. Jun 21, 2021;41(7):870-896. [ CrossRef ]
• Nielsen J. 10 usability heuristics for user interface design. Nielsen Norman Group. 1994. URL: https://www.nngroup.com/articles/ten-usability-heuristics/ [accessed 2020-11-15]
• Ancker JS, Stabile C, Carter J, Chen LY, Stein D, Stetson PD, et al. Informing, reassuring, or alarming? Balancing patient needs in the development of a postsurgical symptom reporting system in cancer. AMIA Annu Symp Proc. 2018;2018:166-174. [ FREE Full text ] [ Medline ]

Abbreviations

Edited by A Mavragani; submitted 22.03.23; peer-reviewed by C Laranjeira; comments to author 15.01.24; revised version received 20.02.24; accepted 08.03.24; published 26.04.24.

©Natalie Benda, Sydney Woode, Stephanie Niño de Rivera, Robin B Kalish, Laura E Riley, Alison Hermann, Ruth Masterson Creber, Eric Costa Pimentel, Jessica S Ancker. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 26.04.2024.

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