qualitative research ethical guidelines

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Ethical challenges of researchers in qualitative studies: the necessity to develop a specific guideline

Mahnaz sanjari.

1 Nursing PhD Candidate, School of Nursing and Midwifery, Tehran University of Medical Sciences, Tehran, Iran

Fatemeh Bahramnezhad

Fatemeh khoshnava fomani, mahnaz shoghi.

2 Assistant Professor, School of Nursing and Midwifery, Iran University of Medical Sciences, Tehran, Iran

Mohammad Ali Cheraghi

3 Associate Professor, School of Nursing and Midwifery, Tehran University of Medical Sciences, Tehran, Iran.

Considering the nature of qualitative studies, the interaction between researchers and participants can be ethically challenging for the former, as they are personally involved in different stages of the study. Therefore, formulation of specific ethical guidelines in this respect seems to be essential. The present paper aimed to discuss the necessity to develop explicit guidelines for conducting qualitative studies with regard to the researchers’ role. For this purpose, a literature review was carried out in domestic and international databases by related keywords.

Health care providers who carry out qualitative research have an immense responsibility. As there is no statistical analysis in qualitative studies, the researcher has to both evaluate what he or she observes and to interpret it. Providing researchers with the necessary skills and applying stringent supervision can lead to better extraction of reliable information from qualitative studies. This article presents a debate in order to illustrate how researchers could cover the ethical challenges of qualitative studies and provide applicable and trustworthy outcomes.

Researchers face ethical challenges in all stages of the study, from designing to reporting. These include anonymity, confidentiality, informed consent, researchers’ potential impact on the participants and vice versa. It seems of paramount importance that health care providers, educators and clinicians be well informed of all the different aspects of their roles when acting as qualitative researchers. Hence, these adroit roles need to be well defined, and the use of practical guidelines and protocols in all stages of qualitative studies should be encouraged.

Introduction

In the recent millennium, the constant trend of change in the demands of the community as well as transforming the trend of knowledge production has highlighted the necessity for researchers to adopt a more comprehensive approach. Increasingly, many academic disciplines are utilizing qualitative research (QR) as the qualitative method investigating the why and how of the process of a developed concept ( 1 , 2 ). Qualitative research is sometimes defined as interpretive research, and as interpretations can be incorrect or biased, the findings may be controversial ( 3 ). However, qualitative research is not only useful as the first stage of quantitative research, but can also play a key role in ‘validating’ it or in providing a different viewpoint on the same social phenomena ( 4 ).

Qualitative studies tend to use methods that result in text production rather than numerical outputs. Given that the researcher is considered to be the research instrument, and the plan of inquiry needs to be developed and altered as the study progresses, a qualitative researcher cannot depend upon traditional approaches to address certain concerns such as bias and credibility. Therefore, learning from a series of mistakes is often considered an integral part of qualitative research ( 5 , 6 ).

In this study, a literature review was carried out in international electronic databases including PubMed, Web of Sciences, Cumulative Index to Nursing and Allied Health Literature (CINAHL), Scopus, Ebsco, EMBASE and Science Direct without any time limitation, using the search terms “qualitative research”, “researchers’ role”, “ethical challenges” and “ethical guidelines”. These keywords were also searched on national electronic databases including Scientific Information Database (SID), Iran Medex and Medical Articles Library (Medlib) using the same strategy.

Authors of the present article endeavor to shine a light on the ethical issues affecting researchers and propose strategies to face the ethical challenges of qualitative studies, so as to provide applicable and trustworthy outcomes. This could be the basis for the formulation of specific ethical guidelines in this regard.

An overview on qualitative research in health care

Up to the 1970s, qualitative research was solely employed by anthropologists and sociologists. During the 1970s and 1980s, however, it was favored by various disciplines and experts of different branches of science and humanity such as health care, psychology , nursing, management, political science , education, and communication studies ( 2 , 7 ).

Qualitative research has been conducted in the field of nursing in order to identify, describe and explain related concepts, experiences and phenomena and to develop the nursing knowledge. Nursing professionals simultaneously introduced qualitative research to their peers. Since 1970, qualitative research has been performed to achieve the concepts of patient care and other main perceptions in the nursing profession. Qualitative studies provide nurses with sensitivity to the lived experiences of individuals from different nursing care aspects ( 4 , 8 ).

Role of researchers in qualitative studies

In the case of nurses who perform qualitative research, ethical issues are raised when the nurse-patient relationship in the research area leads to some degree of therapeutic communication for the participants ( 9 ). Thus, nurse researchers must be aware of the impact of the questioning on the participants, and in order to decrease such harmful effects on human subjects, the “reflexive approach” is recommended ( 10 ).

In qualitative studies researchers are often required to clarify their role in the research process ( 11 ). In the QR procedure the researcher is involved in all stages of the study from defining a concept to design, interview, transcription, analysis, verification and reporting the concepts and themes. Therefore, whenever instruments are involved in qualitative research, a human being will be an integral part of the process ( 12 ).

It is argued that humans have increasingly become the “instrument of choice” for naturalistic research due to certain characteristics: they are highly responsive to environmental stimuli, have the ability to interact with the situation, pull together different pieces of information at multiple levels simultaneously, and perceive situations holistically; moreover, they are able to process findings the instant they become available, can present immediate feedback, and feel unusual responses. Nevertheless, researchers need to improve the abilities that make them appropriate human instruments and consequently, their interpersonal skills are of major importance in natural settings and study processes ( Table 1 ) ( 13 , 14 ).

Researcher’s role in qualitative methods at a glance

Ethical challenges in qualitative studies:

The researcher-participant relationship.

The relationship and intimacy that is established between the researchers and participants in qualitative studies can raise a range of different ethical concerns, and qualitative researchers face dilemmas such as respect for privacy, establishment of honest and open interactions, and avoiding misrepresentations ( 19 ). Ethically challenging situations may emerge if researchers have to deal with contradicting issues and choose between different methodological strategies in conflict arises. In such cases, disagreements among different components such as participants, researchers, researchers’ discipline, the funding body and the society may be inevitable ( 20 , 21 ). Some important ethical concerns that should be taken into account while carrying out qualitative research are: anonymity, confidentiality and informed consent ( 22 ).

According to Richards and Schwartz’ findings ( 22 ), the term ‘confidentiality’ conveys different meanings for health care practitioners and researchers. For health care practitioners, confidentiality means that no personal information is to be revealed except in certain situations. For researchers, however, the duty of confidentiality is less clear and involves elaboration of the form of outcome that might be expected from the study ( 22 , 23 ).

The researcher must endeavor to minimize the possibility of intrusion into the autonomy of study participants by all means. When highly sensitive issues are concerned, children and other vulnerable individuals should have access to an advocate who is present during initial phases of the study, and ideally, during data gathering sessions. It is sometimes even necessary that the researcher clarify in writing which persons can have access to the initial data and how the data might be used ( 24 , 25 ).

Informed consent has been recognized as an integral part of ethics in research carried out in different fields. For qualitative researchers, it is of the utmost importance to specify in advance which data will be collected and how they are to be used ( 26 ). The principle of informed consent stresses the researcher’s responsibility to completely inform participants of different aspects of the research in comprehensible language. Clarifications need to include the following issues: the nature of the study, the participants’ potential role, the identity of the researcher and the financing body, the objective of the research, and how the results will be published and used ( 27 ).

Informed consent naturally requires ongoing negotiation of the terms of agreement as the study progresses ( 26 ). Many people consider it necessary to participate in research that their peers, community and/or society may benefit from. Therefore, qualitative health researchers need to clarify that the research they carry out will benefit science and can contribute to the improvement of health policy ( 5 ).

Research design

The qualitative method is utilized to explain, clarify and elaborate the meanings of different aspects of the human life experience. Therefore, researchers can interpret people’s experiences because they are involved in human activities. The principle of ‘no harm’ to participants ought to be considered by researchers, who should be aware of the potential harms that might be inflicted upon study subjects. Obviously, sometimes a conflict between the right to know (defended on the basis of benefits to the society) and the right of privacy (advocated based on the rights of the individual) may happen ( 27 , 28 ).

There are several effective strategies to protect personal information, for instance secure data storage methods, removal of identifier components, biographical details amendments and pseudonyms (applicable to names of individuals, places and organizations) ( 27 ). Researchers have the responsibility of protecting all participants in a study from potentially harmful consequences that might affect them as a result of their participation. It is getting increasingly common for research ethics committees to seek documented proof of consent in a written, signed, and ideally, witnessed form. Researchers can only do their best to protect their respondent’s identity and hold the information strictly confidential as there would be no guarantee for it otherwise ( 29 ). Furthermore, in investigations of sensitive topics where written consent puts the informants at risk, audio recorded oral consent would be more appropriate ( 30 ).

Development of personal relationships with participants may be inevitable while collecting certain data. Therefore, researchers should seriously consider the potential impact they may have on the participants and vice versa, and details of such interactions should be clearly mentioned in research proposals ( 23 ). Overall, the role of the researcher as (a) stranger, (b) visitor, (c) initiator, (d) insider-expert or other should be well defined and explained ( 3 ). As Brenner quoted Kvale state that, preparing an ethical protocol can cover issues in a qualitative research project from planning through reporting ( 30 ).

Data gathering and data analysis

In qualitative research, data are collected with a focus on multifaceted interviews and narratives to produce a description of the experiences. The researchers, therefore, play the role of a mediator between the experiences of the respondents and the community of concerned people ( 28 , 31 ). The post-interview comment sheet could assist the researcher to note the feelings of informants, as well as interpretations and comments that occurred during the interview ( 32 ).

Data collection needs to be as overt as possible, and findings should be recorded. Although there is no guarantee of absolute confidentiality, openly recording field notes assists participants to decide what they wish to have on the record. In health care research, the problem may be even more exaggerated as the researcher is sometimes the health provider as well ( 33 ).

In comparison with other research methods, ethnography has singular characteristics. When a researcher aims to study the culture of certain people, living amongst them is inevitable. This method of collecting data is a subject of debate from an ethical point of view. Long presence of the researcher amongst people of a particular culture necessitates informed consent. Participants should always be aware of the information that has been obtained and is being recorded, and consent to it. Sometimes this cannot be achieved easily and conflicts may happen, as in studies of cultural and ethnic characteristics ( 18 ).

The physical presence of the researchers within the culture requires them to be responsible for their role and potential consequences on the field. For instance, when criminals or a group of war veterans suffering from a disease are the subject of a study, the risks involved in living amongst them should be considered. Ethnographers must be vigilant about any distractions stemming from close interactions that can be potentially harmful to participants in the long run ( 33 , 34 ). Researchers can benefit from supervision sessions directed at learning, mentoring and skill development, all of which can foster their ability to carry out research without risking their health. Adequate professional supervision (which may be outside of the university) can be of service to researchers in dealing with the potential stress associated with the study ( 35 – 37 ).

In order to gain explicit data, ethnographers need to know the role of instrument details. There are eleven steps defined in ethnography which are meant to assist researchers. These steps include participant observation, ethnographic record, descriptive observation, taxonomic analysis, selected observation, componential analysis, discovering the cultural theme, cultural inventory, and finally writing ethnography ( 38 , 39 ).

Researchers should always be aware of the precise reason for involvement in a study in order to prevent undesirable personal issues. The probability of exposure to vicarious trauma as a result of the interviews needs to be evaluated. Interviewers should be properly scheduled to provide the researcher with sufficient recovery time and reduce the risk of emotional exhaustion, while allowing ample time for analysis of the objective and emotional aspects of the research. It is also necessary for the researcher to be familiar with signs of extreme fatigue and be prepared to take necessary measures before too much harm is done ( 40 – 42 ).

In qualitative studies, researchers have a great responsibility and play many different roles. It is argued that qualitative research that deals with sensitive topics in depth can pose emotional and other risks to both participants and researchers. Clear protocols for dealing with distress should be in place so that both parties involved in research can use them if necessary. It is not usually easy to predict what topics are likely to lead to distress, and researchers should therefore receive sufficient training in predicting traumatic situations.

Preventive measures for researchers who carry out sensitive qualitative studies should include official arrangements for a peer support program consisting of a list of researchers who are involved, or a constellation of researcher support activities aiming at improving psychological fitness in the form of a professional confidence building module. Other such measures include offering adequate supervision to provide opportunities for self-development and self-care, and facilitating the process of self-reflection and self-monitoring.

Strategies for emotional distancing need to be considered and adopted if the research topic or participants have the potential to be emotionally challenging. An appropriate planning should be in place before the commencement of the fieldwork, and it must be perfectly clear how the study should be conducted and what level of relationship development is necessary. Measures must also be taken so that levels of self-disclosure, objective displays of emotion during the interviews, and strategies to end the relationships are well defined and communicated.

One of the most prominent tasks of qualitative researchers is to minimize the flaws in observation and endeavor to gain truthful knowledge. Therefore, it is necessary for researchers to continuously update their investigation skills in terms of methodology and find novel techniques to better carry out studies in the field of health and sociology.

As explained before, qualitative research is carried out in natural settings, which requires researchers to work in close collaboration with other members of the team and under direct supervision to discuss and resolve issues as they arise. Therefore, development of practical strategies and communicating them to researchers can be of great benefit and assist them in conducting more perceptive qualitative studies. It is noteworthy that such research should be directed towards making a difference in people’s lives, improving care delivery in different settings and at all levels, and providing a framework for health sciences without any ethical disturbances.

As a result of the extensive body of research in the field of medical sciences, patients comprise a large proportion of the public who are frequently subjects of studies. Research Ethics Committees are formed to provide independent advice to participants, researchers, funders/sponsors and healthcare organizations on the extent to which research proposals comply with universally endorsed ethical standards.

In the history of social and medical science, there have been a few research studies that seriously injured people, and many more in which their welfare was not sufficiently protected. Nations and research associations have taken steps to prevent hurtful and intrusive research. To return to the matter of privacy, the researcher should not rely solely on the informant to identify possible intrusion, but needs to work at anticipating it in advance. Confidentiality does not necessarily preclude intrusion, as anonymity by itself is not enough to protect a person’s privacy or prevent disclosure of personal issues. Investigators should refrain from soliciting private information that is not closely related to the research question.

Considering the aforementioned challenges, it is recommended to conduct further research in order to provide meticulous and explicit ethical protocols, guidelines and codes with respect to qualitative studies.

Acknowledgments

The authors would like to offer special thanks to Dr. Ali Tootee for his assistance in the language editing of this article.

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Ethics in Qualitative Research: A Practical Guide

2019, International Forum

Qualitative research continues to grow around the world. More and more scholars and institutions of higher education continue to embrace it. Publications must continue to be on practical ways of conducting qualitative research in general and conducting it especially ethically. This paper is focused primarily on practical ways of enhancing ethical practices in qualitative research. While many qualitative research books and articles discuss ethical considerations, it is good to have a paper that synthesizes effective strategies to enhance ethics in a much more practical way. This paper goes from the definition of ethics to the importance of ethical practices and to the implementation of practical considerations before, during, and after data collection in qualitative research. This paper is not meant to be exhaustive; however, it should be a good guide for qualitative researchers who wish to avail of practical strategies for good ethical practices.

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Statistics for the Public Good

Ethical considerations associated with Qualitative Research methods

Introduction.

This high-level guidance has been developed by the UK Statistics Authority’s Centre for Applied Data Ethics (CADE), and the UK Government Data Quality Hub (DQHub), based at the Office for National Statistics (ONS). The guidance can be used as a practical resource to help researchers identify different ethical issues when conducting qualitative research.  

This guidance is not exhaustive but aims to support researchers navigating the ethical issues surrounding qualitative research projects (particularly in relation to primary data collection). It brings together existing literature on qualitative research methods and their ethical concerns. Links to further resources are provided if you would like to read about aspects in more detail.  

The guidance has been created for researchers using qualitative methods within the ONS . However, the ethical considerations discussed, and the mitigations for these, can be more widely applied to all types of qualitative research.  

The guidance is divided into several parts.    

• An introduction to qualitative research and why ethics matters in this space.   
• An overview of some of the ethical considerations associated with qualitative research methods, and some potential mitigations for these issues. This includes an overview of some of the qualitative methods used within the ONS.  
• An ethics checklist which summarises the main points covered in this guidance.    
• A list of helpful links to further resources.   

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Nih clinical research trials and you, guiding principles for ethical research.

Pursuing Potential Research Participants Protections

“When people are invited to participate in research, there is a strong belief that it should be their choice based on their understanding of what the study is about, and what the risks and benefits of the study are,” said Dr. Christine Grady, chief of the NIH Clinical Center Department of Bioethics, to Clinical Center Radio in a podcast.

Clinical research advances the understanding of science and promotes human health. However, it is important to remember the individuals who volunteer to participate in research. There are precautions researchers can take – in the planning, implementation and follow-up of studies – to protect these participants in research. Ethical guidelines are established for clinical research to protect patient volunteers and to preserve the integrity of the science.

NIH Clinical Center researchers published seven main principles to guide the conduct of ethical research:

Social and clinical value

Scientific validity, fair subject selection, favorable risk-benefit ratio, independent review, informed consent.

• Respect for potential and enrolled subjects

Every research study is designed to answer a specific question. The answer should be important enough to justify asking people to accept some risk or inconvenience for others. In other words, answers to the research question should contribute to scientific understanding of health or improve our ways of preventing, treating, or caring for people with a given disease to justify exposing participants to the risk and burden of research.

A study should be designed in a way that will get an understandable answer to the important research question. This includes considering whether the question asked is answerable, whether the research methods are valid and feasible, and whether the study is designed with accepted principles, clear methods, and reliable practices. Invalid research is unethical because it is a waste of resources and exposes people to risk for no purpose

The primary basis for recruiting participants should be the scientific goals of the study — not vulnerability, privilege, or other unrelated factors. Participants who accept the risks of research should be in a position to enjoy its benefits. Specific groups of participants  (for example, women or children) should not be excluded from the research opportunities without a good scientific reason or a particular susceptibility to risk.

Uncertainty about the degree of risks and benefits associated with a clinical research study is inherent. Research risks may be trivial or serious, transient or long-term. Risks can be physical, psychological, economic, or social. Everything should be done to minimize the risks and inconvenience to research participants to maximize the potential benefits, and to determine that the potential benefits are proportionate to, or outweigh, the risks.

To minimize potential conflicts of interest and make sure a study is ethically acceptable before it starts, an independent review panel should review the proposal and ask important questions, including: Are those conducting the trial sufficiently free of bias? Is the study doing all it can to protect research participants? Has the trial been ethically designed and is the risk–benefit ratio favorable? The panel also monitors a study while it is ongoing.

Potential participants should make their own decision about whether they want to participate or continue participating in research. This is done through a process of informed consent in which individuals (1) are accurately informed of the purpose, methods, risks, benefits, and alternatives to the research, (2) understand this information and how it relates to their own clinical situation or interests, and (3) make a voluntary decision about whether to participate.

Respect for potential and enrolled participants

Individuals should be treated with respect from the time they are approached for possible participation — even if they refuse enrollment in a study — throughout their participation and after their participation ends. This includes:

• respecting their privacy and keeping their private information confidential
• respecting their right to change their mind, to decide that the research does not match their interests, and to withdraw without a penalty
• informing them of new information that might emerge in the course of research, which might change their assessment of the risks and benefits of participating
• monitoring their welfare and, if they experience adverse reactions, unexpected effects, or changes in clinical status, ensuring appropriate treatment and, when necessary, removal from the study
• informing them about what was learned from the research

More information on these seven guiding principles and on bioethics in general

This page last reviewed on March 16, 2016

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Qualitative Methods in Monitoring and Evaluation: Ethical Considerations in Qualitative Research

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Evaluators use the emic perspective, and qualitative data collection techniques, to understand the how and why around a project. This can give us insight into the planning, implementation, outputs, and sometimes even impact of a project. However, the use of qualitative data collection techniques presents a unique set of ethical considerations that evaluators must take into account throughout the entire research process. Two ethical issues in qualitative research include confidentiality, and the role of the researcher as a data collection instrument.

When we use qualitative data collection techniques, we usually spend a lot of time with research populations. We engage people at the community level. We oftentimes learn intimate details about people’s lives when we do so. This presents unique ethical considerations in qualitative research. On one level, as evaluators we need to build rapport to have people trust us enough to give us what can be personal details or controversial information related to a project. We need cross cultural communication skills to build rapport, but we must also earn the trust of, and above all, respect, the project population.

A project population needs to be comfortable giving us personal details or discussing controversial information, and, very importantly, we need to respect confidentiality around this. We need to make sure that we provide a project population with confidentiality at all stages of our research. This goes past getting informed consent from research participants. We might need to disguise identities of those giving controversial information, or in some instances find diplomatic ways to release research findings.

The researcher conducting an evaluation does hold a certain amount of power over the population, like it or not. Evaluators oftentimes come from an organization funding or implementing a project. How does this impact the relationship we have with stakeholders? Project partners might want to answer a question a certain way, or show us a certain need or part of the project, in order to ensure continued funding. A solid evaluation design can help to mitigate some of these potential problems. We should remember though that our reports can impact the direction of a project, and the lives of project participants, and this is surely not lost on implementers or community members. It should not be lost on us as researchers, either.

As qualitative researchers , we are the research instruments, and as such, we should also consider the effect of the researcher on the actual data collected. The observations that we make and the questions that we ask will depend on our own thought processes and biases. Our own internal biases impact what we see, and the conclusions that we draw. If we are aware of and interested in gender or environmental concerns, we might be more likely to seek out information and pinpoint potential problematic areas around these issues. Our previous experiences oftentimes guide our thought patterns, impacting our research in the process.

Attributes such as a researcher’s sex, gender, language, age, race, and marital status might also impact the data to which we have access. How we carry ourselves as researchers, including how we dress and our approachability, could additionally impact the data to which we have access. If we know the local culture well enough, we should be able to come to an understanding of how we will be viewed in the local culture, and how this will impact our work. We need to be aware of these ethical concerns in qualitative research and make considerations based on our project and the data we need to collect.

Qualitative researchers are reflective; we are aware of cultural attributes that might affect the data we collect and the data to which we have access. As qualitative researchers, we embrace that the data we collect is filtered through ourselves, and we find ways to mitigate our own biases and interpretations in trying to understand the emic. We keep journals to compare to our data, so that we can ascertain if our mindset on a particular day impacted the data we collected. We develop solid research designs that include data collected on multiple occasions using multiple qualitative methods. Sometimes, for instance in a project with gender implications, we might craft a design that includes space for multiple researchers.

Building trust and confidentiality with the population, knowing the local culture so that we understand its micropolitics, and detecting our own biases as we engage in the research process, are all important steps in collecting valid and reliable data using qualitative data collection techniques.

About the Author Dr. Beverly Peters has more than twenty years of experience teaching, conducting qualitative research, and managing community development, microcredit, infrastructure, and democratization projects in several countries in Africa. As a consultant, Dr. Peters worked on EU and USAID funded infrastructure, education, and microcredit projects in South Africa and Mozambique. She also conceptualized and developed the proposal for Darfur Peace and Development Organization’s women’s crisis center, a center that provides physical and economic assistance to women survivors of violence in the IDP camps in Darfur. Dr. Peters has a Ph.D. from the University of Pittsburgh. Learn more about Dr. Peters .

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• Published: 14 May 2024

Perceptions of vision care following neurological impairment: a qualitative study

• Kerry Hanna   ORCID: orcid.org/0000-0001-7357-7749 1 ,
• Elizabeth Lomas 1 ,
• Stephen Rimmer 2 &
• Fiona Rowe 3  

BMC Health Services Research volume  24 , Article number:  626 ( 2024 ) Cite this article

Metrics details

Visual impairment is a common consequence of neurological impairments, and can impact a person’s ability to undertake everyday tasks, affecting their confidence and mental health. Previous qualitative research in the UK has shown inequalities to exist where patients are accessing vision care after stroke, but little is known around the experiences of accessing vision care following other neurological impairments, and a lack of national guidelines prevent standardised care planning. The aim of this qualitative study is to explore the perceptions of vision care after neurological impairment, and to identify possible inequalities and support mechanisms, where it has been possible to access vision care.

University ethical approval was obtained, and adults with a visual impairment as a result of a neurological impairment were offered an in-depth interview to explore their vision care experiences. Data were collected between April and November 2021 and analysed using iterative, thematic analysis (TA), informed by a social constructionist ideology.

Seventeen participants were recruited. Three overarching themes were conceptualised in relation to the participants’ perception of vision care: Making sense of the visual impairment; The responsibility of vision care; and Influential factors in care quality perception.

Inequalities were noted by participants, with most reporting a lack of suitable vision care offered as part of their neurological rehabilitation. Participants were thus burdened with the task of seeking their own support online, and encountered inaccurate and worrying information in the process. Participants noted changes in their identity, and the identity of their family carers, as they adjusted to their vision loss. The findings from this research highlight a need for clinicians to consider the long-term impact of vision loss after neurological impairment, and ensure patients are provided with adequate support and information, and appropriate referral pathways, alleviating this patient burden.

Peer Review reports

Visual impairment is a common consequence of neurological impairments, such as neurodegenerative conditions and acquired brain injury (ABI), including traumatic and non-traumatic brain injury, such as stroke, brain tumours or infection [ 1 ]. The prevalence of visual impairment following all types of ABI varies significantly in the literature, as it depends on the type, location and severity of the injury, however researchers have estimated that the prevalence of subjective visual impairment can exceed 70% of patients [ 2 , 3 ]. This figure may be underestimated, however, as some patients do not describe their problems as “vision related” [ 4 ]. The prevalence of vision impairment in neurodegenerative conditions such as multiple sclerosis, Alzheimer’s disease, and Parkinson’s disease, has been reported between 1.7–58% [ 5 , 6 , 7 ]. However, studies often consist of small numbers, with some authors considering visual acuity decline as the only measure of vision impairment [ 3 , 5 ], without considering other visual impairments that may occur following neurological impairment such as, difficulties with visual field loss, ocular motility disorders, and visual perceptual deficits [ 8 , 9 ].

The impact of living with visual loss following neurological impairment can be far reaching. Recent research reported complications with visually impaired (VI) persons returning to work or driving, undertaking everyday tasks, and socialising, with subsequent effects on confidence and mental health [ 10 , 11 ]. Moreover, neurological impairments often result in additional comorbidities or health complications that the person must learn to overcome, such as speech, swallow and gait issues, alongside their new visual impairments, impacting on their engagement with rehabilitation and quality of life [ 12 , 13 ].

Due to the wide-reaching visual loss experienced following neurological impairments, and the complexity of assessing visual impairment in addition to other generalised disabilities, orthoptists are best placed to diagnose and manage visual disorders [ 14 ]. However, previous qualitative research in the UK has shown inequalities to exist where patients are accessing vision care after stroke, with care reportedly inconsistent across hospitals, and the visual impairments impeding patients from attending clinic appointments [ 12 ]. In addition, there is research to suggest that orthoptists are not always included in the care planning for these patients [ 15 ]. National guidelines exist in the UK, stipulating recommendations for appropriate orthoptic visual care after stroke [ 16 ], however similar guidelines are lacking for other types of neurological impairment. Therefore, clinicians assessing and treating patients within these fields are unsupported in detecting and managing visual impairments, meaning patients’ visual impairments may be missed or misdiagnosed.

Whilst research has expanded in recent years to explore the inequalities facing VI patients in accessing visual care following stroke specifically, it is possible that inequalities exist within the care pathway of other neurological conditions but this is yet to be established in the published literature. By providing a better understanding of inequalities facing people in accessing vision care following a wider range of neurological impairments, vision services can aim to adapt and improve their delivery, ensuring maximum engagement from patients. Therefore, the aim of this qualitative study was to explore the perceptions of vision care after neurological impairment, and to identify possible inequalities and support mechanisms experienced by people, where it had been possible to access vision care.

Aim, design and setting of the study

Qualitative data were collected between April and November 2021, which aimed to explore the perceptions of vision care after neurological impairment. Original research funding was granted in 2020, however due to the pandemic restrictions at that time, all non-COVID-19 related research projects were temporarily halted at the University. The project was restarted in 2021 following an amendment to the ethics application to allow for remote individual, semi-structured interviews. A topic guide was used to support the interview discussion (see Appendix 1 ). Participants were initially asked demographic background questions, and were then asked to discuss their perception of visual care following their neurological diagnosis/impairment, and throughout subsequent treatment. In addition, participants were asked to discuss the impact that their neurological condition, and subsequent care received, had on their wellbeing.

Participants were offered an interview via an online video call platform, or a recorded telephone call, dependent on the participant’s preference. Interviews were conducted by one researcher (KH), a female academic researcher and qualified clinical orthoptist. No one else was present for the interview, other than the interviewees and the interviewer. One outpatient department in an acute neurological centre in England, and various national charity organisations across the UK, advertised the study for recruitment. The study information was shared with organisations, and further information was further posted on social media. Interested participants then contacted the principal investigator via email and an approved participant information sheet and consent form were emailed to the participants, and re-read again prior to taking consent. Formal, written consent was obtained prior to an interview date being arranged. Further informal, verbal consent was taken before the interview commenced, which was also audio-recorded, as per the approved ethical protocol. In addition, the interviewer made confidential field notes at the time of interview, to ensure each topic was discussed thoroughly. Interviews lasted on average 34.75(± 12.1) minutes.

The COREQ checklist was used to guide the reporting of this research [ 17 ], See Supplementary Material 1 .

Participants

Eligibility for the study included adults with a vision impairment as a result of a neurological impairment, such as a traumatic brain injury, a stroke or a degenerative neurological disease. Visual impairments could include acuity loss, ocular motor impairments and/or double vision, visual perceptual disorders, visual field loss, or a combination of impairments. Participants had to be aged ≥ 18 years and residing in the United Kingdom (UK). Due to the potential severity of participants’ visual impairment, a second person (such as a spouse, partner or sibling) was permitted to take part in the interview as well, if it was deemed that the participant would not be able to complete the interview otherwise.

Data analysis and epistemology

Iterative, thematic analysis (TA) was employed, informed by a social constructionist ideology, exploring the lived experiences of the participants through language and narrative. Thus, open questioning was used to generate responses that were actively constructed by the individuals through personal accounts [ 18 ]. TA was chosen for this research as it offers a flexible and in-depth way of exploring the research question, and allows for consideration not only of the perspectives of the individuals, but the meanings behind their choices and any potential impact on these meanings from wider society [ 19 ]. A reflexive TA strategy was followed, based upon the six-step model outlined by Clarke and Braun [ 20 ]. The researchers acknowledge that reflexive thematic analysis does not support the concept of data saturation as a guiding principle for qualitative sample size [ 21 ]. Thus, interviews were immediately transcribed and coded, so that meaning (instead of prevalence) of codes could be carefully considered. Recruitment ceased when it was determined by the research team that no new meaning was derived from the interviews.

Three interviews were transcribed by KH, to allow for immersion within the data and to better support later conceptualisation of themes [ 22 ]. The remaining interviews were transcribed by an experienced typist at the University, and anonymised by one researcher (KH) whilst checking for accuracy. Transcripts were not returned to participants for accuracy as no recording errors were identified. Transcripts were then blindly coded by two researchers (KH and EL), who are experienced qualitative researchers. In addition, two transcripts were double coded, to provide a 10% quality check.

Reflexivity

Reflexivity enhances the quality of research, by disclosing the researchers’ position(s) and considering similarities or differences with the recruited participants. All authors are female, clinical orthoptists with professional academic backgrounds (academic teaching and research). FR is a Professor of Orthoptics with extensive experience in the field, who mentored the lead researcher on this project. KH is a postdoctoral researcher with a research interest in addressing health inequalities, and conducted the interviews. KH and EL analysed the data and are experienced qualitative researchers. All authors have contributed their perspectives to this research through agreement of overall findings and approval of the manuscript.

One public advisor with a visual impairment following acquired neurological impairment, contributed to the study development by overseeing the study protocol, qualitative methodological plan, and preliminary analysis. This insight helped to inform the research and ensure the findings were grounded within the reality of living with visual impairment following neurological impairment.

Demographics

Seventeen participants (15 VI participants with an acquired neurological impairment, and one dyad consisting of a VI individual with their partner) completed an interview. Table  1 shows the demographics of included participants.

Thematic analysis

Following analysis of the transcripts, three central themes were conceptualised from the data: (1) Making sense of the visual impairment; (2) The responsibility of vision care; and (3) Influential factors in care quality perception. Table  2 shows the themes and subthemes following analysis.

Making sense of the visual impairment

The emotional impact of the diagnosis.

Participants spoke of the initial shock when diagnosed with a neurological impairment, and subsequent visual loss. The clinical diagnosis was unexpected and as such, the participants had very little prior awareness of the condition(s) or long-term outcomes. The lack of previous knowledge resulted in confusion and worry, as they struggled to come to terms with the loss and change in lifestyle.

…with having no understanding of traumatic brain injury and they [health professionals] never said anything…they didn’t seem to know I was in post-traumatic amnesia…it was [from] me personally googling…and coming to the realisation myself a year down the line that I suffered a very severe traumatic brain injury ID04 I had a stroke…completely unexpected, there were no FAST symptoms whatsoever…I instantly lost part of my vision on the right-hand side… ID05 . …you go through the various stages, it’s that shock, then the anger… Sight is a primaeval sense that people fear losing ID07 .

Due to the limited awareness of visual loss and how this may present, the language participants used to describe their visual impairments was often unique to their own experiences and their own interpretation of their vision (as opposed to the terminology used in clinical and academic settings). Their visual description was often blended with other neurological deficits, such as dizziness, fatigue and speech problems, highlighting the multitude of issues presenting with neurological impairment. Overall, participant accounts expressed a sense of fear and concern where health professionals were not offering a formal visual diagnosis initially, despite participants describing visual loss in their own words.

my third nerve would buzz and then I could definitely link it to, if it buzzed then the next day I could see more, I could move my eye more… ID04 … it was just like stars in front of my face, it felt like when I was about to faint and I’d been saying for 2 weeks that I was having some problems with my sight and nobody had done anything…it was then found out that I had the visual field loss ID06 [I get]…occasional clouded vision if I get really, really tired. It’s the focussing thing generally because one eye moves faster than the other…now and again [I get]…double vision with my forward [vision]… ID02 [I get] pain…dizziness, forgetfulness, broken words and stammering. So, I’ll forget to speak…and I can walk into things and I can become very forgetful whilst I’m talking to somebody… ID01

Fear, uncertainty and adjusting to the diagnosis

Participants reported confusion around their diagnosis, often due to a lack of clear information and a collection of misdiagnoses from a range of neurological conditions until health professionals were certain of a true cause. This, at times, led to a lack of trust around the final diagnosis, which in turn led to struggles in adjusting.

At first, they [health professionals] didn’t know what the condition was, they assumed it was maybe a stroke, but then went to Meniere’s disease…and, a professional…did tests on me and said it’s basilar artery syndrome…It [the condition]’s not stopped [and] normally it stops and gives people some respite ID01 it really upset me, it made me feel like why are they not listening to me…I knew that something was wrong with me…that distressed me more, the fact that I knew something was wrong… ID06

Participants were unclear of the long-term outcome of their visual loss, and whether they would recover and be able to return to activities such as driving. Evidence of adaptation was apparent in some areas of life, but not in others. In most cases, participants were using learned methods to get by, but were still aware of challenges in their day-to-day life due to their ongoing visual impairments.

I wouldn’t be allowed to drive unless I wore an eye patch…that would be a big thing…I don’t like the idea of driving with an eye patch over the right eye… because I was hit on the right side [road traffic accident] I don’t like the idea of not being able to see on the right-hand side. ID04 …things like exercise…now I have to take a step back and just do 10 rather than 20 min…I did have a…panic attack…I felt overexerted and…I knew in the back of mind I’d already had a stroke, I just didn’t want to risk it ID10 I just make sure I cross the road properly… I don’t wear headphones outside now…it’s getting a little better but I am being more cautious like, making sure that I have someone on my left if I’m outside… ID13

In addition, navigating life after visual loss resulted in fear for some, as they worried about how others would perceive them. Participants described new, self-enforced, social limitations as a form of adapting, due to feelings that others would misinterpret the physical consequences of their neurological and visual impairments.

I can I look like I’m drunk even though I don’t drink…. So, I’m a bit self-conscious of that . so I don’t like to go out…I’ll tend to be quiet and not speak or if I do speak it’s quite short which comes across rude and it’s not me being rude it’s just being over cautious and not wanting to look like a bit of an idiot. ID01 I hate going out…I don’t like going for shopping…because I bump with people because…I cannot judge distance as well…sometimes I fall down because I didn’t see the pavement, which makes me very anxious…when I bump with people [they] think oh I just didn’t see [them] but it’s a problem with [my] vision. ID03

The responsibility of vision care

The patient burden in seeking support.

Participants reported a range of people responsible for supporting them in receiving their visual care; however, primarily this task resided with the participant themselves. The participants reported cases where the responsibility to seek out advice and support resulted in them asking for help, and accepted blame for lack of care received where they failed to mention their symptoms at appointments.

I didn’t know it [neurological impairment] was going to affect my [vision]…I didn’t realise it would visually impair me. So, I didn’t raise it with my consultant… they’ve not provided me any support for my eyesight loss but only because I’ve not told them. ID01 they [hospital staff] literally said bye we will see you later, they gave me no information at all, no suggestions of phone numbers for [charity organisation] or anything at all on things I could do to try and improve ID06

Family support was a frequent point of discussion, with participant accounts illustrating the importance of advocacy, and the inequity that would arise from not having family or friends to advocate on their behalf, particularly in the earlier stages of diagnosis. Participants acknowledged that they would not have received the level of visual support and information that they managed to attain without the persistent support of a family member acting on their behalf. Again, these accounts portrayed a gap in the care system, whereby adequate information was not provided by a formal healthcare professional at the time of neurological/visual diagnosis.

…mum and dad were very supportive but obviously they don’t have any knowledge of any of the conditions…they didn’t think I’d have any problems because of my head injury…they weren’t told anything [from the health professionals] ID04 I get on with it but I would feel terribly sorry for somebody who didn’t have…a very supportive family, very supportive friends… ID07

Peer support groups were discussed as a means of gaining more information around the newly acquired diagnoses, and learning adaptation strategies from others with the same experiences. However, participants were again left with the responsibility to find suitable groups themselves, and many reported a lack of suitable services available. Some reported feeling they were not appropriate members for such groups, as they did not perceive their visual impairments to be as severe as others in the group. Similarly, where it was felt that the group discussions were frequently negative and unhelpful, the participants disengaged.

it’s always really useful when you meet other people who have either the same or a similar condition…you can say to somebody…things that you wouldn’t really bother asking a doctor. I went along to some local groups, which I didn’t stick with because I found them a little bit depressing. I’m quite a positive person and…obviously because the diagnosis, it wasn’t what I thought was a very positive atmosphere ID02 I’d researched stuff off my own back, no medical professionals gave me anything. I joined the [charity organisation] Facebook groups and…it was only in there that I started getting suggestions from other people in the same situation…if I’m honest I felt like a fraud because I was partially sighted whereas everyone in my group was totally blind…I remember being like this is this not going to help me at all ID06

Research, social media, and self-seeking help

With frequent misdiagnoses, misinformation or a lack of formal visual care, many participants turned to internet searches to explain their symptoms, and to seek evidence of long-term outlook. However, participants readily acknowledged the limitations of self-seeking information online, due to the vast quantity of unevidenced, misinformation available. Online charity organisations can provide support and advice, if participants are able to find these websites. In all cases, participants reported a desire for clear and formal information to be signposted by the healthcare professionals, to limit the burden placed upon them and the possibility of accessing misinformation.

…I do read a lot about [neurological condition], in the beginning…I just wanted to know more about it…I’m very aware that there’s a lot of information out there that isn’t maybe quite accurate so I found the [charity organisation] very useful because I’d see that as quite a trusted source ID02 …I did loads of research…it was just very difficult because I’m not a doctor so…sometimes…you go down that rabbit hole [and] it makes you feel worse…I’d rather hear it from someone [who] at least has a bit of training on it rather than just some guy on YouTube ID10

In addition, where visual care was lacking, participants reported using the internet to seek out research studies or non-national health service (NHS) centres conducting work into visual loss due to their neurological impairment. Enrolling in research projects allowed participants to find out more information concerning their eyesight, and to hopefully manage the condition.

I’m doing this research, it’s free, they’ll even pay you… So, its free rehab they’re paying you to do…and people [from peer support group] were still like oh no it’s a little bit too far for me, and I’m thinking God I would have travelled to America to get my eyesight back ID10 No [I didn’t receive visual treatment] from the hospital but I did another research thing, a student from the University… there was a computer-based thing where you had to hit keys to move things about…I still keep that up because…I think it helps but I’m not sure… ID02

However, in some cases, participants reported high personal costs incurred from embarking on treatments found online that are not available through the NHS, and were later found to be unsuitable. This highlights a significant inequality in care, where patients spend unnecessary money trying to seek care, which could be avoided through clear advice from health professionals around their visual prognosis. Participant accounts described a sense of desperation and urgency in trying to recover their lost vision through any means possible, and the understandable disappointment of paying for treatments that had little or no effect on their vision.

I found out about [private vision clinic]…I thought I might as well give it a go because I’ve got nothing to lose, other than money…I think it said I’d improved like 5% but I think…that 5% is for me knowing the task more, I don’t think it’s from my eyesight improving ID06 looking back now I think it was a bit of a shamble, it’s this doctor on YouTube and she claims that she can get up to 15 to 80% of your vision back if you’ve had a stroke and…It was almost 10 thousand dollars, so that’s how much I wanted my eyesight back ID10

Changes to self-identity

For many, interview discussion naturally incorporated comparison of their lives pre and post-visual impairment. Changes to their lives often included loss of employment, limitations in driving and using transport, and relationship breakdowns in their personal lives. This discussion appeared to emphasise the scale of loss and significant changes to their normal day-to-day living.

I was a very healthy person. I cycled over eight miles a day, I drank [alcohol] little, I didn’t smoke and nor did drugs [pause]. I lost my job from [neurological impairment]…most of my friendship group didn’t know how to deal with it…I now say I’ve got no friends because they don’t come round anymore… ID01 I had to apply reapply for my [driving] license and I told [the driving agency] I’d had a stroke…and because my vision…it was revoked…I completely lost my independence through all of that ID05 I was very independent…I had to move back in with my parents for them to look after me, and having to ask them to drive me around everywhere, it took me back to being 15 again…I just I stopped socialising ID06

In light of these changes, many of the participants reported a new identity that formed from their visual loss. Many enrolled in a number of research projects to better understand their vision loss, and viewed this as a new role; supporting the growing evidence base and preventing similar issues affecting people with their condition. Furthermore, a change in identity was noted in the family members who became active carers for the participants. They took on the role of procuring food, medication and actively searching for relevant support groups online. It was reported that family carers took time to accept the label of their new role as carer for their loved one.

I want to be able to get back to normal life…but I spend my day googling exercises I can try and finding people that have gone through similar things…But there is hope that it might improve. ID14 my wife has only in the last six months decided or accepted that she is in fact my carer because she gets my medication, she drives me around and provides food, but she’s only just accepted that ID05 I think that anyone that hasn’t got a partner as committed and interested as [partner], they’d struggle a lot. I don’t know where I’d be now, if it was not [for partner] to help [with sorting] my food out, and like make those little changes… ID16

Influential factors in care quality perception

The staff-patient relationship, and power balance.

Where visual care was offered to participants following their neurological diagnosis, an apparent power imbalance between the clinicians and the patient was described. Often this appeared to stem from the participant’s lack of prior knowledge around the neurological and/or visual impairment, which left them reliant on the information offered by the clinicians.

when the appointments were happening around my vision I would say I was too tired and didn’t have the mental capacity, so I wasn’t looking at anything to do with the vision, I was just leaving it to what the hospital told me. ID04 they could have given me leaflets…I would have liked that information…even when they [health professionals] were talking to me I tried to write notes in the phone and they told me off and they were like oh don’t worry we will send it in a letter but the discharge thing was all in their language… ID13

Due to the persistent frustration of living with impairments and not receiving the appropriate care, some participants spoke of instances where they reclaimed power in the staff-patient relationship. Unfortunately, this often resulted from formal complaints to the hospital in the hope that a referral to appropriate vision services would be made, with participants describing a breaking point in their mental wellbeing.

I rang up [patient advice and liaison service] at the hospital…I hadn’t heard anything for 15 or 16 months, and all of a sudden, I had a phone call… and then they referred me to the orthoptist… ID06 it took a lot for me…I was getting really frustrated…I was ringing around and [saying] listen, you know there’s something wrong with my eyes can somebody refer me…I remember being really annoyed…[it was] after that when I had to go and see the specialist ID10

Communication, and good care versus good luck

Some participants praised the vision care offered to them. The factors that influenced a perception of good care included visual care being offered early after diagnosis, and consistently thereafter. Further factors of good care included considerations for wider support, including that for the family carers, and being provided with sufficient time to ask questions, and have these adequately addressed by the clinicians.

[I was offered vision care] quite early into the process…and that’s continued all the way through, every time I have an appointment at the [neuro] centre I see the vision lady as well [pause]. As a patient it’s that element of control…a lot of your life you don’t have control of anymore but you feel like you’re in control of your appointment, when you go and what you want, it’s very person centred. ID02 The nicest person I had in the medical service…cared more for [my wife] as well [as me]. She was asking about how she [wife] was doing and she was looking for services for us…she realised that care wasn’t just for that person the care was for in the family as well ID01

A notable finding from this research is that when vision care was offered, even if it was not found to be particularly helpful in addressing their concerns, the participants frequently described themselves as “lucky”. Participants credited exceptional reasons for why their care was lucky, including clinicians being helpful in response to others failing to listen to them, or knowing hospital workers who could help chase appointments.

…my eyes went funny again so I went to the hospital and [the consultant] was really not very nice with me at all…insinuating that I was a hypochondriac…but my GP has been absolutely fantastic [helping with vision care referral]…I count myself lucky that I’m with them ID09 …it was a struggle just to get the appointments…I remember getting so frustrated because I was ringing and ringing and ringing and I eventually went in [to hospital] and thank God I actually knew one of the nurses…I said listen can you have a look at my file and just find out why am I waiting so long for an appointment… ID10 . I think there needs to be more like connection with services…I’m lucky because I work in a hospital so I’ve referred myself [to the clinic]…so, I’m lucky ID13

These participants further offered suggestions for how they would have liked to receive their visual care. Suggestions included timely, targeted advice soon after their visual diagnosis, and improved knowledge of visual consequences by health professionals. In instances where the neurological impairment impeded participants from taking in information provided by health professionals, a preference for (lay) information to be shared with family was suggested.

I would say there appears to be, the fact that the paramedics didn’t realise you can have a stroke without FAST symptoms…particularly for hemianopia and none of them ever pick up on it…I would have thought if you’re going into any kind of medical training you would have [that] knowledge ID05 once you’ve been diagnosed there should be somebody really outside the door with a leaflet. I do think it should be factored in. Even if it’s patient services liaison just sat outside the hallway just to say…what your condition is… ID01

Receiving vision support during and since the COVID-19 pandemic

For most participants in this study, their neurological and visual care had been ongoing for many years. Therefore, conversation naturally arose regarding the care received during the time of the COVID-19 pandemic, as participants were able to make contrasting observations from the time before and after pandemic restrictions. Additional inequalities in accessing care during pandemic restrictions were reported, including delays in receiving care, the transition to telemedicine, and an inability to see primary care physicians as a first point of contact when symptoms have changed.

I’ve got nobody to help…[I’m] just not going to know what’s out there and what help I can get. I would say…because of COVID my aftercare was absolutely lacking for everything ID11 . I’ve got another telephone appointment at the end of this month…I know COVID’s still going on but the levels are drastically dropping…I’m a slight worried that this may be the way most consultants now go…I just find telephones quite rude…if I’m having a conversation with somebody I can see how that person…reacting and talking…and [if] I’m unshaven and my clothes are hanging off and I’m smelling a bit they’ll say clearly I can see you’re not [doing well]. ID01

Where participants noted that communication from health services during the pandemic was lacking, this furthered previous notions that the burden of care rested with the patient. The participants were left to chase hospital appointments and seek the help they needed when their vision was evidently deteriorating.

I didn’t receive any letter from [the hospital] and I tried to chase them up. I tried to call them and no answer, and I sent them an email, no answer. And my vision gets worse…it’s not really good communication with patient, I know it’s COVID but this is about the health and about the vision, it’s about my life to be honest. ID03 When lockdown happened…I rang up my doctors in tears and I was just like I can’t do this anymore, I’m having no help, I’m having no support. So, they then referred me to the local low vision people…all these were just purely from me ringing the doctors being like I can’t do this anymore ID06

Moreover, the impact that the pandemic restrictions had on daily life affected access to peer support groups and activities for VI people. Despite restrictions lifting, it was evident that some services did not reopen to the same level as before the pandemic, and for some, the confidence and enjoyment lost during this time could not be recovered. This resulted in further isolation and loss of social interaction.

…before COVID [I went] to a walking group…and often we would need to get public transport… But once we got into COVID they started saying you can’t sit next to someone else and they would tape [seats] off. Even though that [restriction]’s been removed, I certainly [don’t] have the confidence to go on public transport of any description ID05 …then COVID happened and I think it’s hampered my recoverybecause I just feel like I can’t get back to being the old me…I can’t take my daughter to nursery, I have to get…taxis to work and that’s like taking your life in your hands…it’s that horrendous, I just can’t look [due to vision impairment]…it feels like I’m a burden ID11

The findings from this qualitative exploration of participants with vision impairment as a result of neurological impairment, identified inequalities in the vision care pathway. These inequalities contributed to the participants’ inability to make sense of their visual impairment, the personal burden of responsibility in seeking vision care, and an imbalance in the staff-patient relationship due to poor communication and lack of adequate and equal care offered after neurological diagnosis.

Previous qualitative research with stroke survivors specifically reported similar inequalities in perceptions of the vision care pathway after diagnosis, including a lack of early visual assessment and subsequent management strategies [ 24 ]. This research was conducted 10 years prior to the current study, highlighting a lack of significant change around the quality of vision care offered to patients, and further highlights that lack of suitable vision care is not specific to stroke patients, but impacts other brain injury populations also.

Our study did not use discourse analysis when considering how participants described and understood their visual loss. However, the language used by participants when discussing visual impairments was noticeably unique in description, and did not easily reflect their clinical diagnoses. Previous research found patients to use a wide range of descriptors for symptoms of dry eye, glaucoma and macular degeneration [ 25 , 26 , 27 ], with the current findings adding that symptoms of neurological visual loss, such as double vision and visual field loss, are also described in a range of different ways by people with no previous awareness of such problems. Visual impairments following neurological impairment are often deemed “invisible” [ 28 ], with non-eye-trained clinicians relying mainly on patient reported symptoms of visual loss to make appropriate diagnoses and/or onward referrals [ 29 ]. Thus, differing descriptions of symptoms could impact patients in receiving a timely diagnosis and referral to vision services, as described in this research, in cases where clinicians cannot clearly identify the visual problems. Further evidence has shown that more detailed descriptions emerge where patients are previously informed of their condition from a trained eye professional [ 27 ]. Therefore, it is clear that patients require adequate information from trained professionals, such as orthoptists, in understanding their visual conditions. This will not only support clinicians in making appropriate diagnoses, but will support the patient in coming to terms with their visual loss, and identify appropriate online information or support groups targeted to their visual condition.

Another notable finding from this research was the frequent reference to vision care being “lucky”, despite otherwise negative descriptions of poor and delayed care. Previous ethnographic research reported descriptions of luck to emerge where patients received good news at an outpatient consultation [ 30 ]. However, in the case of our current study participants, visual impairments did not recover and treatment was rarely offered. Their perception of luck often related to a clinician listening to their needs, or making an appropriate referral (months or years after their initial onset). This perception of “lucky” care may reflect the staff-patient power imbalance identified from this study, whereby participants were dissatisfied with their care but did not always feel empowered to say so. This research further highlighted instances where participants eventually attempted to take back power after long-term frustration, through complaints made to health services. Similar instances of power imbalance have been noted previously with VI older adults, due to a lack of knowledge and self-reliance [ 31 ]. The authors suggested that professionals should be made aware of the range of unmet needs facing these patients, and empower them to disclose challenges during consultations [ 31 ]. Thus, it is first important to ensure patients are offered adequate and timely visual care, so that they can then be offered the opportunity to say when the care plan is not suitable for their needs, and avoid instances of high stress and hospital complaints in order to receive such care.

Changes in self-identity following neurological and visual impairments have been discussed previously in the literature [ 12 ], with affected people frequently exhibiting examples of “impression management” to protect their character [ 32 ]; creating a persona that reflects the important qualities of their life before their neurological diagnosis. The participants in this research frequently described changes to their lives after their neurological diagnosis that often centred around adapting (where possible) to their visual impairments, and becoming actively involved in research studies and peer support groups. This finding concurs with previous research into stroke survivors’ adaptation of visual field loss, which suggested that adaptation is an individual process and changes to meet the needs of the environment and task, with the authors promoting that early diagnosis and management should be offered to these patients to support them in adapting [ 33 ].

In addition, our findings shed light on the importance of patient advocates following neurological impairment, through which most vision support was sought and the interests of the participants promoted where participants were unable to do this for themselves, particularly in the early stages after diagnosis. As a result, it was reported that the family/informal carers also experienced changed identities, as they became actively involved in caring for their loved one, procuring basic necessities and searching for helpful online information. Previous literature reviews have reported changed roles of family carers in patients with chronic disease and neurological impairments, such as dementia and stroke [ 34 , 35 , 36 ]. These caregivers experience losses to their previous relationship and feelings of carer burden [ 35 ]. However, little is known around the impact of caring for someone with a co-existent visual impairment after neurological diagnosis, highlighting an area for further research to be conducted.

An important finding from this research was that vision care was unequal across the participant experiences, with most reporting no offer of vision support. Unequal vision service provision has been noted after a diagnosis of stroke in the UK [ 15 ], but this finding shows similar issues exist across other neurological impairment diagnoses. Where vision care is not received, the burden is placed on the patient to find support. Previous evidence has shown the value of peer support groups for VI people, which enhances their ability to cope with visual loss and improve levels of wellbeing [ 37 ]. However, our current participants reported stress caused from filtering through a myriad of online information, often inaccurate or worrying, and tried multiple support groups until they found one that was suitable to their needs. A recommendation from this research is that health professionals should signpost appropriate information and organisations to patients, preventing them from becoming over burdened with this task. Resources and factsheets are already in existence to support patients in this way, and clinicians should make good use of these without further effort required (see Supplementary Material 2 ). Moreover, our participants described a sense of desperation to restore lost vision where possible, resulting in them enrolling in projects or treatments that were later found to be unsuitable. Offering patients supportive information around the prognosis of their visual loss early after diagnosis, could further prevent them spending unnecessary money. Participants in this research described losing their jobs, and being unable to return to work resulting in a lower income, therefore, spending money on treatments unnecessarily will only widen such inequalities.

Although it was not the focus of the research, it was inevitable that discussion around the impact to health services caused by the COVID-19 pandemic emerged, as interviews were conducted within this time period. Participants reported issues with telemedicine, and challenges in speaking directly with a healthcare professional. This finding has been reported in other areas of health and social care research, as patients may experience digital exclusion due to poor internet connection, complex technologies and concerns around data protection and privacy [ 38 ]. However, there is a lack of robust evidence exploring the impact of telemedicine during the pandemic in vision services specifically, despite reports that tele-consultations for orthoptic services rose substantially during this time [ 39 ]. Survey responses collected by orthoptists during the pandemic raised concerns around ethical and confidentiality issues, in addition to technological issues experienced when delivering this service [ 39 ]. However, conflicting survey evidence indicates that telemedicine can be a suitable service for vision care; namely for reporting on the results of previous assessments and ongoing monitoring [ 40 , 41 ]. The authors noted, however, that participants reported issues with the description of clinical findings via telemedicine [ 41 ], although no further explanation was offered for this finding due to the nature of the survey data collection method, which lacked in-depth exploration to better understand the patient experiences. Comparably, however, our participants also described challenges in understanding information provided by the healthcare providers, often as a result of their other neurological symptoms. Furthermore, participants reported an unmet need whereby telemedicine did not offer them the correct environment to disclose sensitive information and anxieties, whilst it was felt that clinicians would not be able to identify physical signs of lack of coping via the telephone. Therefore, it appears that telemedicine may have a place in ophthalmic practice, where patients have already been diagnosed with their visual condition and are receiving ongoing monitoring. However, face-to-face appointments may serve a better purpose in supporting those with visual loss following neurological impairment, particularly where their diagnosis is unclear and problems may arise later when adjusting to their vision loss.

Limitations

There was a lack of Black, Asian and Minority Ethnic (BAME) participants within the study cohort, due to the convenient sampling method used in this explorative research. Previous evidence reported inequalities within this population specifically, when accessing vision care in the UK, such as health information not being available in different languages [ 42 ], and an underrepresentation of Asian patients registered partially sighted [ 43 ]. Moreover, differences in demographics (namely age) between white British and BAME VI stroke survivors have been reported [ 44 ]. Therefore, further inequalities may exist within the VI BAME cohort following other neurological diagnoses, that should be explored in future research using targeted sampling methods.

A further limitation of this work could result from the addition of one caring dyad. Combining dyadic and individual interviews is not ideal as it could be argued that different forms of data collection can yield differing result. However, this inclusion allowed participants to take part in research who would otherwise not have been able to. In this case, the VI participant was reliant on their partner to support their access to/engagement with the remote interview. This is particularly important in research into health inequalities, as it is possible that these participants experience barriers to inclusion in other aspects of their visual care, which should be recorded.

This research is one of the first to explore experiences of vision care in participants with a broad range of neurological impairments. Inequalities were noted in the vision care pathway, which was often inadequate or absent altogether from participants’ neurological rehabilitation. Where vision care is lacking, participants are burdened with the task of seeking their own support online, and encountered inaccurate and worrying information in the process. There is a risk of patients paying high costs for treatments that are not suitable to their condition, due to a lack of formal vision support offered to them, and their desperation to seek treatment. The findings from this research highlight a need for clinicians to consider the long-term impact of vision loss after neurological impairment on the patient and their families, ensuring patients are provided with adequate support and information throughout the remainder of their neurological care. In addition, participants noted a preference for patient-centred, face-to-face consultations where possible, where they can openly discuss the impact of their vision loss with clinicians. Telemedicine was not deemed a suitable method for vision care delivery following neurological impairment, although use of this service appears to have increased since the COVID-19 pandemic. This finding can help inform the optimum method for vision service delivery for patients with neurological impairment.

Participants further noted changes in their identity after diagnosis, as they adjusted, where possible, to their visual loss. In addition, it was noted that family members had to adapt to the role of an informal carer during this time. Little is currently known around the role and impact of caring for a person with co-existing visual and neurological impairments, warranting further exploration.

Data availability

The data that support the findings of this study are available on request from the author [KH]. The data are not publicly available due to ethical restrictions.

Bruns J Jr, Hauser WA. The epidemiology of traumatic brain injury: a review. Epilepsia. 2003;44:2–10.

Article   PubMed   Google Scholar  

Goodrich GL, Kirby J, Cockerham G, Ingalla SP, Lew HL. Visual function in patients of a polytrauma rehabilitation center: a descriptive study. J Rehabilitation Res Dev. 2007;44(7).

Theis J. Visual disturbances in acquired brain injury. NeuroRehabilitation. 2022.

Berthold-Lindstedt M, Ygge J, Borg K. Visual dysfunction is underestimated in patients with acquired brain injury. J Rehabil Med. 2017;49(4):327–32.

Jasse L, Vukusic S, Durand-Dubief F, Vartin C, Piras C, Bernard M et al. Persistent visual impairment in multiple sclerosis: prevalence, mechanisms and resulting disability. Multiple Sclerosis Journal. 2013;19(12):1618 – 26.10.1177/1352458513479840.

Mendola JD, Cronin-Golomb A, Corkin S, Growdon JH. Prevalence of visual deficits in Alzheimer’s disease. Optometry Vis Science: Official Publication Am Acad Optometry. 1995;72(3):155–67.

Article   CAS   Google Scholar  

Hamedani AG, Abraham DS, Maguire MG, Willis AW. Visual impairment is more common in Parkinson’s disease and is a risk factor for poor health outcomes. Mov Disord. 2020;35(9):1542–9.

Article   PubMed   PubMed Central   Google Scholar  

Rowe FJ, Hepworth LR, Howard C, Hanna KL, Cheyne CP, Currie J. High incidence and prevalence of visual problems after acute stroke: an epidemiology study with implications for service delivery. PLoS ONE. 2019;14(3):1–16.

Article   Google Scholar  

Armstrong RA. Visual problems associated with traumatic brain injury. Clin Experimental Optometry. 2018;101(6):716–26. https://doi.org/10.1111/cxo.12670 .

Heinze N, Jones L, Makwana B. A rapid review of evidence relating to service use, experiences, and support needs of adults from minority ethnic communities along the eyecare pathway in the United Kingdom. Front Public Health. 2023;11:1119540. https://doi.org/10.3389/fpubh.2023.1119540 .

Demmin DL, Silverstein SM. Visual Impairment and Mental Health: Unmet Needs and Treatment Options. Clin Ophthalmol. 2020;14:4229 – 51.10.2147/opth.S258783.

Hanna K, Mercer D, Rowe F. A qualitative exploration of the sociology of poststroke visual impairments and the associated health inequalities. Brain Behav. 2020;10(8):e01738. https://doi.org/10.1002/brb3.1738 .

Park WL, Mayer RS, Moghimi C, Park JM, Deremeik JT. Rehabilitation of hospital inpatients with visual impairments and disabilities from systemic illness. Arch Phys Med Rehabil. 2005;86(1):79–81. https://doi.org/10.1016/j.apmr.2004.01.021 .

Rowe F, Walker M, Rockliffe J, Pollock A, Noonan C, Howard C, et al. Delivery of high quality stroke and vision care: experiences of UK services. Disabil Rehabil. 2016;38(8):813–7. https://doi.org/10.3109/09638288.2015.1061604 .

Hepworth L, Rowe F. Ten years on - a Survey of Orthoptic Stroke Services in the UK and Ireland. Br Ir Orthopt J. 2019;15(1):89–95. https://doi.org/10.22599/bioj.135 .

Intercollegiate Stroke Working Party. National Clinical Guideline for Stroke for the UK and Ireland. London: Royal College of Physicians; 2023.

Google Scholar  

Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. International Journal for Quality in Health Care. 2007;19(6):349 – 57.10.1093/intqhc/mzm042.

Thorogood N, Green J. Qualitative methods for health research. Qualitative methods for health research. 2018:1-440.

Braun V, Clarke V. Using thematic analysis in psychology. Qualitative Research in Psychology. 2006;3(2):77-101.10.1191/1478088706qp063oa.

Clarke V, Braun V. Thematic analysis: a practical guide. Thematic Anal. 2021:1–100.

Braun V, Clarke V. To saturate or not to saturate? Questioning data saturation as a useful concept for thematic analysis and sample-size rationales. Qualitative Res Sport Exerc Health. 2021;13(2):201–16. https://doi.org/10.1080/2159676X.2019.1704846 .

McMullin C. Transcription and qualitative methods: implications for third Sector Research. Voluntas. 2023;34(1):140–53. https://doi.org/10.1007/s11266-021-00400-3 .

National Statistics. English indices of Deprivation 2019. London: Ministry of Housing, Communiities and Local Government; 2019.

Rowe FJ. Stroke survivors’ views and experiences on impact of visual impairment. Brain Behav. 2017;7(9):e00778.

Taylor DJ, Edwards LA, Binns AM, Crabb DP. Seeing it differently: self-reported description of vision loss in dry age-related macular degeneration. Ophthalmic Physiol Opt. 2018;38(1):98–105. https://doi.org/10.1111/opo.12419 .

Nichols KK. Patient-reported symptoms in Dry Dye Disease. Ocul Surf. 2006;4(3):137–45. https://doi.org/10.1016/S1542-0124(12)70040-X .

Cross V, Shah P, Bativala R, Spurgeon P. ReGAE 3: Glaucoma awareness and perceptions of risk among african-caribbeans in Birmingham, UK. DiversityinHealthandSocialCare. 2005;2:81–90.

Falkenberg HK, Mathisen TS, Ormstad H, Eilertsen G. Invisible visual impairments. A qualitative study of stroke survivors` experience of vision symptoms, health services and impact of visual impairments. BMC Health Services Research. 2020;20(1):302.10.1186/s12913-020-05176-8.

Rowe FJ. Accuracy of referrals for visual assessment in a stroke population. Eye. 2011;25(2):161 – 7.10.1038/eye.2010.173.

Schoenau MN. Dominant restitution narratives of ‘being lucky’: an ethnographic exploration of narratives about operable lung cancer. Eur J Cancer Care (Engl). 2022;31(5):e13633. https://doi.org/10.1111/ecc.13633 .

van der Aa HPA, Hoeben M, Rainey L, van Rens GHMB, Vreeken HL, van Nispen RMA. Why visually impaired older adults often do not receive mental health services: the patient’s perspective. Quality of Life Research. 2015;24(4):969 – 78.10.1007/s11136-014-0835-0.

Goffman E. The presentation of self in everyday life. Middlesex: Penguin Books; 1959.

Howard C, Czanner G, Helliwell B, Rowe FJ. Adaptation to post-stroke homonymous hemianopia–a prospective longitudinal cohort study to identify predictive factors of the adaptation process. Disabil Rehabil. 2022;44(18):5152–61.

Eifert EK, Adams R, Dudley W, Perko M. Family Caregiver Identity: A Literature Review. American Journal of Health Education. 2015;46(6):357 – 67.10.1080/19325037.2015.1099482.

Greenwood N, Mackenzie A. Informal caring for stroke survivors: Meta-ethnographic review of qualitative literature. Maturitas. 2010;66(3):268–76. https://doi.org/10.1016/j.maturitas.2010.03.017 .

Greenwood N, Mackenzie A, Cloud GC, Wilson N. Informal primary carers of stroke survivors living at home–challenges, satisfactions and coping: A systematic review of qualitative studies. Disability and Rehabilitation. 2009;31(5):337 – 51.10.1080/09638280802051721.

Van Zandt PL, Van Zandt SL, Wang A. The role of support groups in adjusting to visual impairment in Old Age. J Visual Impairment Blindness. 1994;88(3):244–52. https://doi.org/10.1177/0145482x9408800309 .

Anthony Jnr B. Implications of telehealth and digital care solutions during COVID-19 pandemic: a qualitative literature review. Informatics for Health and Social Care. 2021;46(1):68-83.10.1080/17538157.2020.1839467.

Rowe F, Hepworth L, Howard C, Lane S. Orthoptic services in the UK and Ireland during the COVID-19 pandemic. Br Ir Orthoptic J. 2020;16(1):29.

Woodward MA, Ple-Plakon P, Blachley T, Musch DC, Newman-Casey PA, De Lott LB et al. Eye care providers’ attitudes towards tele-ophthalmology. Telemed J E Health. 2015;21(4):271 – 3.10.1089/tmj.2014.0115.

Smith J, Hirst N, Yagan A. A Quality Assurance audit of an orthoptic-led virtual Neuro-Ophthalmology Clinic. Br Ir Orthopt J. 2023;19(1):7–14. https://doi.org/10.22599/bioj.289 .

Scase MO, Johnson MR, editors. Visual impairment in ethnic minorities in the UK. International Congress Series. Elsevier; 2005.

Pardhan S, Mahomed I. The clinical characteristics of Asian and caucasian patients on Bradford’s low Vision Register. Eye. 2002;16(5):572–6.

Article   CAS   PubMed   Google Scholar  

Rowe FJ, Hepworth LR. The impact of visual impairment in stroke (IVIS) study–evidence of reproducibility. Neuro-Ophthalmology. 2021;45(3):165–71.

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Acknowledgements

We wish to thank Maxine Martin and Lynn McClymont for transcribing the audio files swiftly.

This research is supported by the Council for Allied Health Professions Research (CAHPR), North West England Consortium bursary awards. The funders had no role in any part of the research. The views expressed in this publication are those of the authors and not necessarily those of the CAHPR.

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KH led the research study, and conducted the interviews. KH and EL coded the transcripts and contributed to research team discussions, which led to final themes. FR has extensive experience in the field and mentored the lead researcher, and supported KH with the funding application, recruitment of participants, and public involvement in this research. One public advisor (SR) contributed to the study development by overseeing the study protocol, qualitative methodological plan, and preliminary analysis. KH wrote the manuscript, and all authors read drafts of the manuscript and approved the final version.

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Hanna, K., Lomas, E., Rimmer, S. et al. Perceptions of vision care following neurological impairment: a qualitative study. BMC Health Serv Res 24 , 626 (2024). https://doi.org/10.1186/s12913-024-11079-9

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Coming out of the ashes we rise: Experiences of culturally and linguistically diverse international nursing students at two Australian universities during the Covid-19 pandemic

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Background and aim: Research on international students conducted during the COVID-19 pandemic has persistently highlighted the vulnerabilities and challenges that they experienced when staying in the host country to continue with their studies. The findings from such research can inevitably create a negative image of international students and their ability to respond to challenges during unprecedented times. Therefore, this paper took a different stance and reported on a qualitative study that explored culturally and linguistically diverse (CaLD) international nursing students who overcame the challenges brought about by the pandemic to continue with their studies in Australia. Method: A descriptive qualitative research design guided by the processes of constructivist grounded theory was selected to ascertain insights from participants' experiences of studying abroad in Australia during the COVID-19 pandemic. Results: Three themes emerged from the collected data that described the participants' lived experiences, and they were: 1) Viewing international education as the pursuit of a better life, 2) Focusing on personal growth, and 3) Coming out of the ashes we rise. Discussion: The findings highlight the importance of recognising the investments and sacrifices that CaLD international students and their families make in pursuit of international tertiary education. The findings also underscore the importance of acknowledging the qualities that CaLD international students have to achieve self-growth and ultimately self-efficacy as they stay in the host country during a pandemic. Conclusion: Future research should focus on identifying strategies that are useful for CaLD international nursing students to experience personal growth and ultimately self-efficacy and continue with their studies in the host country during times of uncertainty such as a pandemic.

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