mental health patient case study

Patient Case #1: 27-Year-Old Woman With Bipolar Disorder

• Theresa Cerulli, MD
• Tina Matthews-Hayes, DNP, FNP, PMHNP

Custom Around the Practice Video Series

Experts in psychiatry review the case of a 27-year-old woman who presents for evaluation of a complex depressive disorder.

EP: 1 . Patient Case #1: 27-Year-Old Woman With Bipolar Disorder

Ep: 2 . clinical significance of bipolar disorder, ep: 3 . clinical impressions from patient case #1, ep: 4 . diagnosis of bipolar disorder, ep: 5 . treatment options for bipolar disorder, ep: 6 . patient case #2: 47-year-old man with treatment resistant depression (trd), ep: 7 . patient case #2 continued: novel second-generation antipsychotics, ep: 8 . role of telemedicine in bipolar disorder.

Michael E. Thase, MD : Hello and welcome to this Psychiatric Times™ Around the Practice , “Identification and Management of Bipolar Disorder. ”I’m Michael Thase, professor of psychiatry at the Perelman School of Medicine at the University of Pennsylvania in Philadelphia, Pennsylvania.

Joining me today are: Dr Gustavo Alva, the medical director of ATP Clinical Research in Costa Mesa, California; Dr Theresa Cerulli, the medical director of Cerulli and Associates in North Andover, Massachusetts; and Dr Tina Matthew-Hayes, a dual-certified nurse practitioner at Western PA Behavioral Health Resources in West Mifflin, Pennsylvania.

Today we are going to highlight challenges with identifying bipolar disorder, discuss strategies for optimizing treatment, comment on telehealth utilization, and walk through 2 interesting patient cases. We’ll also involve our audience by using several polling questions, and these results will be shared after the program.

Without further ado, welcome and let’s begin. Here’s our first polling question. What percentage of your patients with bipolar disorder have 1 or more co-occurring psychiatric condition? a. 10%, b. 10%-30%, c. 30%-50%, d. 50%-70%, or e. more than 70%.

Now, here’s our second polling question. What percentage of your referred patients with bipolar disorder were initially misdiagnosed? Would you say a. less than 10%, b. 10%-30%, c. 30%-50%, d. more than 50%, up to 70%, or e. greater than 70%.

We’re going to go ahead to patient case No. 1. This is a 27-year-old woman who’s presented for evaluation of a complex depressive syndrome. She has not benefitted from 2 recent trials of antidepressants—sertraline and escitalopram. This is her third lifetime depressive episode. It began back in the fall, and she described the episode as occurring right “out of the blue.” Further discussion revealed, however, that she had talked with several confidantes about her problems and that she realized she had been disappointed and frustrated for being passed over unfairly for a promotion at work. She had also been saddened by the unusually early death of her favorite aunt.

Now, our patient has a past history of ADHD [attention-deficit/hyperactivity disorder], which was recognized when she was in middle school and for which she took methylphenidate for adolescence and much of her young adult life. As she was wrapping up with college, she decided that this medication sometimes disrupted her sleep and gave her an irritable edge, and decided that she might be better off not taking it. Her medical history was unremarkable. She is taking escitalopram at the time of our initial evaluation, and the dose was just reduced by her PCP [primary care physician]from 20 mg to 10 mg because she subjectively thought the medicine might actually be making her worse.

On the day of her first visit, we get a PHQ-9 [9-item Patient Health Questionnaire]. The score is 16, which is in the moderate depression range. She filled out the MDQ [Mood Disorder Questionnaire] and scored a whopping 10, which is not the highest possible score but it is higher than 95% of people who take this inventory.

At the time of our interview, our patient tells us that her No. 1 symptom is her low mood and her ease to tears. In fact, she was tearful during the interview. She also reports that her normal trouble concentrating, attributable to the ADHD, is actually substantially worse. Additionally, in contrast to her usual diet, she has a tendency to overeat and may have gained as much as 5 kg over the last 4 months. She reports an irregular sleep cycle and tends to have periods of hypersomnolence, especially on the weekends, and then days on end where she might sleep only 4 hours a night despite feeling tired.

Upon examination, her mood is positively reactive, and by that I mean she can lift her spirits in conversation, show some preserved sense of humor, and does not appear as severely depressed as she subjectively describes. Furthermore, she would say that in contrast to other times in her life when she’s been depressed, that she’s actually had no loss of libido, and in fact her libido might even be somewhat increased. Over the last month or so, she’s had several uncharacteristic casual hook-ups.

So the differential diagnosis for this patient included major depressive disorder, recurrent unipolar with mixed features, versus bipolar II disorder, with an antecedent history of ADHD. I think the high MDQ score and recurrent threshold level of mixed symptoms within a diagnosable depressive episode certainly increase the chances that this patient’s illness should be thought of on the bipolar spectrum. Of course, this formulation is strengthened by the fact that she has an early age of onset of recurrent depression, that her current episode, despite having mixed features, has reverse vegetative features as well. We also have the observation that antidepressant therapy has seemed to make her condition worse, not better.

Transcript Edited for Clarity

Dr. Thase is a professor of psychiatry at the Perelman School of Medicine at the University of Pennsylvania in Philadelphia, Pennsylvania.

Dr. Alva is the medical director of ATP Clinical Research in Costa Mesa, California.

Dr. Cerulli is the medical director of Cerulli and Associates in Andover, Massachusetts.

Dr. Tina Matthew-Hayes is a dual certified nurse practitioner at Western PA Behavioral Health Resources in West Mifflin, Pennsylvania.

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Patient Case Presentation

Figure 1.  Blue and silver stethoscope (Pixabay, N.D.)

Ms. S.W. is a 48-year-old white female who presented to an outpatient community mental health agency for evaluation of depressive symptoms. Over the past eight weeks she has experienced sad mood every day, which she describes as a feeling of hopelessness and emptiness. She also noticed other changes about herself, including decreased appetite, insomnia, fatigue, and poor ability to concentrate. The things that used to bring Ms. S.W. joy, such as gardening and listening to podcasts, are no longer bringing her the same happiness they used to. She became especially concerned as within the past two weeks she also started experiencing feelings of worthlessness, the perception that she is a burden to others, and fleeting thoughts of death/suicide.

Ms. S.W. acknowledges that she has numerous stressors in her life. She reports that her daughter’s grades have been steadily declining over the past two semesters and she is unsure if her daughter will be attending college anymore. Her relationship with her son is somewhat strained as she and his father are not on good terms and her son feels Ms. S.W. is at fault for this. She feels her career has been unfulfilling and though she’d like to go back to school, this isn’t possible given the family’s tight finances/the patient raising a family on a single income.

Ms. S.W. has experienced symptoms of depression previously, but she does not think the symptoms have ever been as severe as they are currently. She has taken antidepressants in the past and was generally adherent to them, but she believes that therapy was more helpful than the medications. She denies ever having history of manic or hypomanic episodes. She has been unable to connect to a mental health agency in several years due to lack of time and feeling that she could manage the symptoms on her own. She now feels that this is her last option and is looking for ongoing outpatient mental health treatment.

Past Medical History

• Hypertension, diagnosed at age 41

Past Surgical History

• Wisdom teeth extraction, age 22

Pertinent Family History

• Mother with history of Major Depressive Disorder, treated with antidepressants
• Maternal grandmother with history of Major Depressive Disorder, Generalized Anxiety Disorder
• Brother with history of suicide attempt and subsequent inpatient psychiatric hospitalization,
• Brother with history of Alcohol Use Disorder
• Father died from lung cancer (2012)

Pertinent Social History

• Works full-time as an enrollment specialist for Columbus City Schools since 2006
• Has two children, a daughter age 17 and a son age 14
• Divorced in 2015, currently single
• History of some emotional abuse and neglect from mother during childhood, otherwise denies history of trauma, including physical and sexual abuse
• Smoking 1/2 PPD of cigarettes
• Occasional alcohol use (approximately 1-2 glasses of wine 1-2 times weekly; patient had not had any alcohol consumption for the past year until two weeks ago)

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• Volume 33, Issue 3
• Case report of a patient with suspected COVID-19 with depression and fever in an epidemic stress environment
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• Rui Fu 1 and
• Yueqin Zhang 2
• 1 Department of Mental Illness and Insomnia , Jingmen Stomatological Hospital (Jingmen Mental Health Center) , Jingmen, Hubei Province , China
• 2 Department of Anorectal Surgery , Second People’s Hospital of Jingmen , Jingmen , China
• Correspondence to Yueqin Zhang; 190686586{at}qq.com

During the COVID-19 pandemic, the number of suspected cases, confirmed cases and those who passed away from the virus has been reported in major media and the internet, and has caused a high degree of tension. In addition, people’s outdoor activities have been limited, making it more difficult to find outlets for releasing stress. Under this situation, some people began to experience emotions of anxiety and depression. This article reports a case of depression with fever caused by the stress tension of the pandemic. The patient was highly suspected to have contracted COVID-19. The reported patient, who had a history of depression and had been to Wuhan to attend an exam, showed obvious pre-exam anxiety under the epidemic situation, which gradually increased the patient's pressure and then caused some adverse symptoms, such as insomnia, anxiety, sweating and a reoccurrent fever. Local community authorities paid close attention to him and later sent him to a general hospital in Jingmen for quarantine and treatment, as he was suspected of having COVID-19. After being hospitalised for half a month, he was ruled out from having ‘COVID-19’ and was cured of depression and discharged from the hospital. From this case, we can realise that, under the situation of the epidemic, people are easily prone to insomnia, anxiety and even depression. As clinicians in general hospitals, especially when encountering large emergencies, we must carefully inquire about the patient’s medical history while strengthening our understanding of psychiatric knowledge to improve the recognition rate for depression.

• affective disorders, psychotic

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See:  http://creativecommons.org/licenses/by-nc/4.0/ .

https://doi.org/10.1136/gpsych-2020-100218

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Introduction

At the end of 2019, the ‘novel coronavirus pneumonia’ ravaged the land of China. This disease shows high rates of infection, incidence and mortality, to which the public population is susceptible. 1 2 It spread rapidly across the country within a short time and brought a considerable negative impact on the lives and economy of the Chinese people. In order to prevent the epidemic from spreading, the Chinese government made a wise and decisive move to close the city of Wuhan, which played a vital role in the future victory over the ‘war epidemic’. Taking the epidemic very seriously, the government upgraded the epidemic to a wartime level emergency. Novel coronavirus pneumonia, an acute infectious pneumonia, was named COVID-19. The main clinical manifestations of COVID-19 in China were fever, fatigue dry cough, and a history of being in Wuhan 14 days before the onset of the disease. The outbreak of the disease in the beginning occurred in Wuhan, Hubei Province, and the surrounding cities of Wuhan. 3 4 During that time, the high numbers of people reporting a fever attracted great attention. Under this situation, some people began to experience emotions of anxiety and depression. 3 Here, we try to distinguish between reoccurrent fever from anxiety/depression induced by epidemic situations and the suspected novel coronavirus pneumonia through the example of this case.

Case history

The patient, male and 18 years old, showed reoccurrent sweating, fever, cough and fatigue for 1 month, having a history of being in Wuhan for an exam a month ago and then returning to Jingmen 2 days later. Community authorities checked his body temperature, showing 37.8°C, and realised that the patient had reoccurrent fever and cough for more than a month, and had been to Wuhan in the past month. This attracted much attention and he was sent to an infectious disease department of a general hospital in Jingmen to be hospitalised and was isolated for suspected COVID-19. 5 The results of physical examination were as follows: isometrical pupils sensitive to light reflection, no rigidity in the neck, body temperature of 37.8°C, heart rate of 110 beats/min, respiratory rate of 20 breaths/min and blood pressure of 110/70 kPa. Chest CT showed a few fibrous foci in the right middle lobe. Nucleic acid test of novel coronavirus was negative on admission day and on the third day. Tests of nine respiratory virus, influenza A and B virus antigens showed negative. Mycobacterium tuberculosis antibodies were negative. Thirteen items of extractable nuclear antigen antibody were negative. Ten items of toxoplasma, others, Rubella virus, Cytomegalovirus, erpes virus were negative. No abnormalities were found in blood, urine routine, liver and kidney function, myocardial enzyme spectrum, thyroid function, C reactive protein, equivalent series resistance, hepatitis B, hepatitis C, HIV antibody and treponema pallidum antibody. The patient's temperature did not improve for 5 days after admission. All blood biochemical and auxiliary examinations were normal. Chief complaints from the patient were as follows: when going to Wuhan to take an important exam a month ago, he felt more stressed than before and was always worried about failing the exam; during that time, when COVID-19 was outbreaking, he developed symptoms such as nervousness, sweating, fever, insomnia and dizziness, which made him consider himself as suffering from COVID-19. The patient's mood was low, pessimistic and negative. He reported sleeping poorly at night, sleeping for only about 3 hours a night, being restless in the ward and being nervous during the day. He often sweated after having body tension, and then the body temperature dropped; after experiencing a cold irritation, his body temperature rose again, between 37.5°C and 38°C. His family members reported that he showed a depressed mood for more than a month and had a 6-year history of depression. After ruling out any physical illnesses causing the fever, psychiatrists carefully inquired interviewed the patient and his family members and considered that (1) although the patient had been to Wuhan a month ago, he did not have any close contact with people in Wuhan. He was driven back and forth to Wuhan by his father (2) there were no clinical indicators of ‘COVID-19’ in all auxiliary examinations in the patient (twice nucleic acid test was negative, and no ground-glass CT was seen in the lung), and the close contacts of the patient (his parents and grandpa) did not have fever, cough and other discomforts (and the father, who stayed with him during the hospitalisation, also underwent a novel coronary pneumonia nucleic acid test, which showed negative); 6 given that the patient had a history of depression for 6 years and was hospitalised in our hospital three times due to the reoccurrence of depression, was particularly anxious during each episode, and then sweated followed by an increased body temperature; when the symptoms of depression and anxiety improved, his body temperature returned to normal. Considering these aforementioned facts, we thought that the fever symptom was caused by repeatedly catching cold, after a sweat due to anxiety. Hence, he was immediately transferred to the psychology department because of depression and, before the exclusion of COVID-19, underwent isolation treatment from medical staff who were under secondary protection. The patient was admitted to the hospital with complaining of ‘anxiety, depressed mood, slow thinking, self-blame, reoccurrent fever, cough, fatigue for 1 month, and a 6 year history of depression’. The results of psychological examination were as follows: clear consciousness; complete orientation; appropriate emotional response; passive contact; negative pessimism; slow thinking; self-blame and self-incrimination; repeated complaints of infection by ‘novel coronavirus’, which had encumbered his family members; depressed mood; anxiety; poverty of speech; and good insight. Laboratory examinations and blood biochemical examination showed no abnormalities. The Hamilton Depression Scale 7 score was 26; the Emotional Self-rating Scale/Depression–Anxiety–Stress Scale 21 8 showed a depression score of 25, an anxiety score of 16 and a stress score of 30. After admission into the hospital, he was treated with venlafaxine sustained-release tablets (75 mg/tablet, oral administration, two times per day in the morning and midday), olanzapine tablets (2.5 mg/tablet, once a day in the midday, oral anxiolytic) and olanzapine tablets (5 mg/tablet, oral, once every night). After 3 days, the patient's night-time sleep improved significantly with 7 hours of deep sleep every night; anxiety during the day significantly improved; the symptom of sweating in the patient disappeared; and the body temperature dropped to between 36.5 °C and 37 °C. The patient's depressive mood significantly improved after 10 days of treatment. The patient smiled when talking and even said that he was in a good mood and was full of hope for his future life. Additionally, he displayed active thinking and showed no anxiety or low self-esteem and pessimistic mood. After being hospitalised for half a month, he was ruled out from having COVID-19 and was cured of depression and discharged from the hospital. After a week, the telephone feedback showed that the patient's mood was stable and that no discomfort such as fever and cough had occurred.

Discussions

Depression, which is characterised by a significant and lasting depressed mood, is a common type of mood disorder. Clinically, it can be seen that the moods of patients with depression are disproportionate to their situations. The depressed moods can range from dejection to sorrow, low self-esteem, depression and even pessimism. The patients may have suicidal attempts or behaviours. The main symptoms are sleep disorder, fatigue, loss of appetite, weight loss, constipation, pain, loss of libido, impotence and amenorrhoea. Depression can also cause disorders in the autonomic nervous system with unexplained physical symptoms, such as fever, night sweats, fatigue, insomnia, weight loss and hand tremor. There were previous reports showing that anxiety symptoms caused fever. 9 The clinical manifestations of COVID-19 are mainly fever, fatigue and dry cough, and the screening content mainly include the monitoring of fever, dry cough, shortness of breath,etc., and inquiry of epidemiological history.

This case was a patient with depression who was in the maintenance stage of treatment. The depression symptoms reoccurred under the pressure of the COVID-19 epidemic. The patient’s fever was the symptom that overlapped with depression/anxiety and COVID-19. Coincidentally, the patient with depression in this case also suffered the symptoms of reoccurrent fever, cough and fatigue. It shows that the level of stress can affect metabolism and cause a fever. 10 11 The dual effects of depression and stress led to repeated incidence of fever in this case. The patient also had a history of recent travel in Wuhan. In that sensitive period, everyone with fever and a history of recent travel in Wuhan was easily associated with COVID-19. After being discovered by the community, he attracted great attention and was then immediately sent to a general hospital. Under that emergency, his family members forgot to report his history and symptoms of depression to the doctor in charge; in addition, the general practitioners he was seen by in China did not know enough about depression. 12 Thus, the patient was misdiagnosed as a suspected COVID-19 case. After diagnosis by a psychiatric specialist, the patient was treated with antidepressant and anxiolytic drugs. With the improvement of his depression symptoms, the patient’s other symptoms, including fever, cough and other symptoms, disappeared. Moreover, the patient's various auxiliary tests did not suggest the possibility of COVID-19. The patient was ruled out as having COVID-19 and was diagnosed with depression.

From this case, we can obtain some inspiration. In the midst of the COVID-19 pandemic, people are prone to insomnia, anxiety and even depression. 13 Patients with a history of depression have a poorer ability to resist stress than others and are more likely to experience a relapse of anxiety and depression, and deserve more social attention. Before and after similar outbreaks and major public events, community health service stations and psychiatric professionals should improve preventative measures. This includes telephone follow-ups, improvements in psychological counselling and proactive adjustment of medications, if needed. These measures can all help to nip the reoccurrence of depressive symptoms in the bud. As clinicians, especially on encountering large crises, we must carefully inquire about the medical history and strengthen multidisciplinary consultation while improving knowledge of psychiatric conditions amongst non-psychiatric staff in order to improve the detection rate for depression in general hospitals.

• Bogoch II ,
• Thomas-Bachli A , et al
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• Holshue ML ,
• Lindquist S , et al
• Working Group of Novel Coronavirus Pneumonia, Zhongshan Hospital Zhongshan Hospital, Fudan University
• Zimmerman M ,
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• Diehl JM , et al
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• Toussaint A-K , et al

Rui Fu graduated from Tongji Medical University of Hubei Province in 1999. He is currently working as vice director of the sleep disorders clinic at the Hubei Jingmen Stomatological Hospital (Jingmen Mental Health Center). His main research interests include applied physiological treatment (cold stimulation) for insomnia, anxiety, depression and early-onset schizophrenia.

Deceased [email protected]

Contributors RF: collection of article cases and main analysis writing. YZ: literature search and article translation proof reading.

Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

Competing interests None declared.

Patient consent for publication Obtained.

Provenance and peer review Not commissioned; externally peer reviewed.

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Mental health case studies

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Article Contents

Introduction, research design and method, opening of the encounter: developing a reciprocal relationship, active listening: power sharing, vision of the future: emphasizing the positive, conclusions.

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Empowering counseling—a case study: nurse–patient encounter in a hospital

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Tarja Kettunen, Marita Poskiparta, Leena Liimatainen, Empowering counseling—a case study: nurse–patient encounter in a hospital , Health Education Research , Volume 16, Issue 2, April 2001, Pages 227–238, https://doi.org/10.1093/her/16.2.227

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This study illustrates practices that a nurse uses in order to empower patients. The emphasis is on speech formulae that encourage patients to discuss their concerns and to solicit information about impending surgery. The study is a part of a larger research project and a single case was selected for presentation in this article because it differed from the rest of the data by manifesting empowering practice. A videotaped nurse–patient health counseling session was conducted in a hospital and transcribed verbatim. The investigator interviewed the nurse and the patient after the conversation, and these interviews were transcribed as well. The encounter that is presented here as a case study is a concrete example of a counseling session during which the patient is free to discuss with the nurse. The empowering practices that the nurse employed were as follows: encouraging the patient to speak out, tactfully sounding out the patient's concerns and knowledge of impending surgery, listening to feedback, and building a positive vision of the future for the patient. We suggest that nurses should pay attention to verbal expression and forms of language. This enables them to gain self-awareness and discover new tools to work with.

In recent literature, empowerment has become an important concept of health education ( Feste and Anderson, 1995 ; van Ryn and Heaney, 1997 ), health promotion ( Labonte, 1994 ; Tones, 1994 , 1995 ; Williams, 1995 ; McWilliam et al. , 1997 ) and health counseling ( Poskiparta et al. , 2000 ). The process of empowerment has been related more to community and organizational levels than to micro levels of practice ( van Ryn and Heaney, 1997 ) where it is constantly crucial ( Tones, 1994 ). In addition, operationalization of the concept of empowerment has been relatively vague. According to Tones ( Tones, 1994 ), empowerment is a major goal of health promotion. This article focuses on health counseling as a means of interpersonal health education practice and uses health promotion as an umbrella term.

Empowerment is as much a process as an outcome of developing the skills and perceptions of clients. It is not only something that happens but a process that is facilitated. In interpersonal health counseling, the primary goal is not to change clients' behavior and seek their compliance with the presented message but rather to raise critical awareness through learning and support, to give clients tools for making changes on their own. The aim is personal empowerment, control and choice, which means that patients become aware of changes in their knowledge and understanding, decision-making skills, enhanced self-esteem/sense of personal control, and development of various social, health and life skills ( Labonte, 1994 ; Tones 1994 ; Anderson et al. , 1995 ; Feste and Anderson, 1995 ; van Ryn and Heaney, 1997 ; Kar et al. , 1999 ).

The basic point of departure for empowerment is taking into consideration the interactive nature of the individual and the environment: people are not completely controlled by their environment nor can they fully control their physical, social or economic circumstances ( Tones, 1994 ). Empowering health counseling is based on recognizing clients' competence, resources, explanations of action styles of coping and support networks. Client initiative, clients' realizations and clients' expressions of their opinions and interpretations are the basis on which clients can approach health issues in collaboration with professionals. They are of crucial importance for their decisions on future action ( Anderson, 1996 ). All this supports the notion that empowering health counseling is significant.

Because learning about personal health is complex, the key issue of empowering health counseling is partnership and reciprocal conversation in a confidential relationship. This means that clients not only analyze their situation but also have an opportunity to plan what to do next, and how to go on and to construct their own solutions to health issues. In this type of hospital health counseling, either patients raise the issues (i.e. determine the topics) or the nurses do so in a sensitive and non-threatening manner ( Poskiparta et al. , 2000 ). Nurses recognize and respect patients' experiences, knowledge and skills, and make their own professional knowledge and expertise available to them ( Williams, 1995 ; McWilliam, et al. , 1997 ), which are important aspects of nurse–patient relationships that are also reported by patients ( Häggman-Laitila and Åstedt-Kurki, 1994 ; Lindsey and Hartrick, 1996 ; Wiles 1997 ). The emphasis is placed on patient-driven [see ( Lindsey and Hartrick, 1996 )] health counseling, where patients' life situations are respected, patient-initiated actions are supported, and shared knowledge and deep understanding are nurtured.

The nurse's institutional task is not only to facilitate patient participation but also to promote patients' awareness of their routines and preconceptions as they are revealed to both interlocutors. This should lead to the aim of interaction, which is to activate self-reflection and re-evaluation and reorganization of patients' activities. The assumption is that new knowledge is gained in this process as a result of empirical realization and deliberation ( Feste and Anderson, 1995 ), which means that both patients and nurses have linked new knowledge to existing knowledge. Thus, patients learn to interpret and outline even familiar health problems in new ways that conform to their worldview [ cf . ( Mattus, 1994 )]. As for nurses, empowerment calls for not only sensitivity but also an ability to accurately perceive patients' messages.

From this point on, the focus is on the content of the interactive process. Tones ( Tones, 1994 ) discusses empowerment theoretically, Labonte ( Labonte, 1994 ) expresses ideas for practice in general, while Feste and Anderson ( Feste and Anderson, 1995 ) provide three empowerment tools for facilitating patients' empowering process: using questions, behavioral language and storytelling. According to them, questions maintain the process of pursuing wisdom, i.e. exploring the meaning of health problems in the context of everyday life. This kind of questioning involves broad questions that relate to one's personal philosophy and lifelong dreams. In addition, it includes practical, day-to-day issues of successfully integrating into one's personal, family, social and professional life. Behavioral language means using words such as `list', `describe', `identify', `decide', etc., in order to encourage patients to act and make choices instead of being satisfied with receiving information. Stories help to facilitate the process of self-discovery because diseases affect all areas of life and each individual's health status is unique.

Van Ryn and Heaney ( Van Ryn and Heaney, 1997 ) pay attention to interpersonal relations by suggesting concrete strategies and examples for empowering practice. In their article, they demonstrate two principles of interaction: (1) provide clients with unconditional positive regard and acceptance, and (2) facilitate client participation. Both principles include several practical strategies (Table I ).

However, the authors pay less attention to empirical findings ( Northouse, 1997 ). The present article describes some linguistic realizations of empowering practice. This article describes a nurse's empowering speech formulae during her efforts to give a patient information about an impending surgical operation and to strengthen her feelings of security by providing her with an opportunity to discuss her concerns. This study adopts a holistic approach to interaction and does not focus on isolated sentences or dialogue structure. The relationship of language and context in comprehension, as well as non-verbal communication, are also discussed.

This article describes a single case derived from qualitative data collected from a total of 38 counseling sessions in a Finnish hospital. Nurse–patient encounters were videotaped and transcribed verbatim. Interviews with the nurses and the patients after the sessions were transcribed as well. All participants volunteered to take part in the research, signed a research license and granted permission for the transcribed data to be used in publications. Nineteen nurses participated in this study. Each nurse conducted two videotaped counseling sessions with different patients. There was only one male nurse while the patient group consisted of 24 female and 14 male patients. The research material took shape as nurses volunteered in the hospital and it was found to be adequate for qualitative analysis. The length of the nurses' careers varied from 1 to 25 years. The ages of the nurses were between 24 and 50 years (mean age 36.9 years) while the patients' ages ranged from 18 to 70 years (mean age 47.9 years). The researcher did not attend the counseling sessions, which lasted from 5 to 45 min. The participating patients were experiencing diverse health problems. Various surgical problems, e.g. knee surgery, hernia operation, breast surgery, hip operation, back operation, post status of brain bleeding and post care of bypass surgery, were among the most representative. In addition to the health problems that had led to hospitalization, many patients also suffered from chronic diseases, such as hypertension, asthma, rheumatic illnesses or diabetes. Many patients also found themselves in an insecure situation when a chronic disease had suddenly been manifested or they were undergoing examinations. There were also some mothers in the group who had delivered recently and had no health problems.

The health counseling sessions were genuine counseling situations that were related to the patients' treatment. A single video camera was used, which meant that the observation of non-verbal communication was limited to examining the session as a whole, including only eye contact, smiles, laughter, tone of voice, gestures and, to some extent, facial expressions. Consequently, the emphasis of this study was examining verbal communication. Separate interviews with the nurses and the patients where both parties were encouraged to express their evaluations of the health counseling were used for partial support of the interpretations, e.g. when describing the patients' opinions about health counseling. We also checked if there were any nurses or patients who were nervous about the videotaping.

This article concentrates on videotaped data. When we examined all of the data we found many encounters that involved some empowering features from time to time, but there were none that were consistently empowering. In this article, we present a single case from the data. This particular encounter was selected because it differed from the rest of the data ( Stake, 1994 ) by manifesting empowering practice most widely. In order to study the interactive nature of communication, the coding and analysis of the videotaped data was based on principles of Conversation Analysis ( Drew and Heritage, 1998 ). The videotapes were transcribed word by word, including stammering, etc. At the same time, additional data were added to the transcriptions, such as pauses during and between turns, onset and termination of overlapping talk, intonation information, and some non-verbal communication. The following transcription symbols were used to indicate this information:

ha+ hands support speech

vo+ rising voice

vo– falling voice

[ ] at the beginning and end of overlapping speech, words enclosed

(( )) transcriber's comments, e.g. smile, laughter, body movements

(.) small but detectable pause

underlining emphasis

… omission of text

=no interval between the end of prior and start of next speech unit

°speech° speech in low volume, words enclosed

`speech'pitch change, words enclosed

The analysis was carried out on a turn-by-turn basis. The principle behind this analysis was to examine how turns were taken with regard to other participants' speech and what sequential implications each turn had for the next. After reading the transcript and watching the recording several times, we discovered a number of empowering expressions in the nurse's speech and concluded that this case was the one which best manifested empowering action in the data.

The particular case describes at the individual level information about the patient's situation, the nurse's interview after the encounter, an in-depth description of the nurse–patient conversation and the observational data derived from it. Pearson ( Pearson, 1991 ) and Patton ( Patton, 1990 ) indicate that a case study can be used, for example, for examining how different concepts emerge or change in particular contexts. However, an even more important question is what can be learned from a single case. Stake ( Stake, 1994 ) suggests that one should select a case that seems to offer an opportunity to learn and contributes to our understanding of specific phenomena. Here, a detailed single case analysis illustrates how empowerment may be practiced during health counseling and demonstrates how new working tools for empowerment can be developed on the basis of a single encounter ( Laitakari, 1998 ). The present study describes the speech of a nurse when she helped a patient to deal with anxiety and to receive information about surgery in an empowering way.

The nurse anesthetist has come to see a patient who is scheduled to have surgery the next day. The encounter involves, besides interviewing, producing a lot of information about the operation, counseling on the preparations for the surgery and advising how to manage after the surgery. The encounter takes place at a table, with the nurse and the patient facing each other. Both are women; the nurse is 50 and the patient 41 years old. The patient had had problems with her back for 10 years and was suddenly admitted to the hospital because of these problems. The patient has recently been examined and a decision has been made to operate on her the next morning. The interviewing session lasted 14 min.

At the beginning of a conversation the participants evaluate each others aims and concerns, and the communication situation as a whole, and this evaluation directs the entire discussion because the participants base their actions on it (Goffman, 1982). In a hospital, it is typical that nurses initiate a discussion ( Leino-Kilpi, 1991 ) and that is what happened in this case ( Extract 1 ). Professional dominance common in medical encounters ( Fairclough, 1992 ) is not so obvious in this conversation. After greeting the patient, the nurse refers to the goal of the discussion and individualizes it by using familiar `you' (line 1) instead of the formal, plural form of `you'. This form of address can be viewed as an act of communicating an appropriate degree of informality. It implies intimacy and mutual respect when a relationship is established ( van Ryn and Heaney, 1997 ).

1 N: Hello, Rose (.) you are going to have surgery 
 2 tomorrow…but now I would like to ask you 
 3 you well about the operation tomorrow if 
 4 there is (.) something that would influence 
 5 the preparations for your operation (.) and 
 6 then you ((ha+)) can bring things up ask well 
 7 er if something is unclear to you ((nod+)) If 
 8 you want to know anything about what's 
 9 going to happen to you tomorrow ((vo–))

((at first the nurse looks at papers on the table, while she speaks she turns her eyes to the patient and nods))

This opening was not typical of the other interviews in the data set, because in the data these encounters were usually initiated with the nurses' brief statements about the impending operation. They explained that they interviewed patients in advance in order to get information and that they could provide information to the patients as well. Nurses usually used formal, plural forms of address when speaking. When referring to the preoperative encounter, they used the plural, institutionalized form `we' [see ( Drew and Heritage, 1998 )], instead of first person singular `I', and plural `you', instead of the singular, when addressing the patient. Other nurses did not individualize their speech. On the contrary, they maintained a distance from the patients. In this particular case, a familiar mode of address reduces social distance, which is very important in health education practice [ cf . ( van Ryn and Heaney, 1997 )]. We explain our interpretations in more detail below.

The nurse uses the verb `ask' (line 2), but her remark further on (line 6–9) `then you can bring up ask well er if you were unclear about something if you want to know something about what's going to happen to you tomorrow' introduces a context for the discussion. Even though the nurse goes on to ask a question about previous operations, the interview becomes an interactive dialogue, with the patient actively participating. On her own initiative the patient discloses symptoms that she has experienced during the last few months, what happened when she needed to come to the hospital and the doctor's decision to perform surgery.

Thus, the nurse introduces the context of the discussion with her opening words [ cf . ( Peräkylä, 1995 )]. She expresses her acceptance by offering collaboration [ cf . ( van Ryn and Heaney, 1997 )] when asking questions. The verb form `would like to' (line 2) gives the discussion an air of voluntariness. The conditional form softens the notion of the necessity of the questions, and the verbal mode implies respect for the patient. At the beginning of the session (lines 1–9), the nurse combines two topics into a single long sentence, which also encourages (lines 6–9) the patient to clarify matters that are unclear to her. The nurse's words leave room for the patient's own thoughts and invites her to look for a personally meaningful way to connect the nurse's questions about the preparations (line 5) for the operation to her lack of information (lines 7–9). Encouraging statements can stimulate the patient to think in a way that is personally meaningful to her and to participate in the conversation ( van Ryn and Heaney, 1997 ; Tomm, 1988). Here, encouragement takes a form that is different from what Feste and Anderson ( Feste and Anderson, 1995 ) suggested; it is given in a more sophisticated manner. The opening words ( Extract 1 ) correspond with the goal that the nurse states later during the interview: `that the patient would receive the information she needs, what she wants to know and that she would feel safe to come, that at least those worst fears would be like forgotten. That she would feel safe'.

An encounter can threaten a patient's need for autonomy and freedom because it gives the nurse the legitimate power to request information about the patient's private life ( van Ryn and Heaney, 1997 ). Here, the nurse is mitigating her power by avoiding threatening terms and using tentative formulations (`would like to, well er, you you'), the emphasis being on the patient's needs. The opening of the interview by the nurse plays an important role in the development of the atmosphere. The act has been planned in advance but is not thoroughly thought out. In addition to conveying information, the main consideration in setting the goal for the discussion is to help the patient deal with her concerns. These are issues that have also been stressed in earlier studies ( Häggman-Laitila and Åstedt-Kurki, 1994 ; Breemhaar et al. , 1996 ; Leinonen et al. , 1996 ; Lindsey and Hartrick, 1996 ; Otte, 1996 ).

Tactful exploration: activation of reflection

Later during the interview, the patient mentions having thought about the impending surgery, which the nurse interprets as an indication of fear for the operation ( Extract 2 ). She indirectly gives the patient an opportunity to deal with her fears. The patient's words (lines 1, 3, 5 and 7) are related to the previous topic and her status during the operation and conclude the discussion. The nurse changes the subject (line 9) by praising the doctor's skill. The nurse and the patient look at each other.

1 P:mmm[think about during the day]= 
 2 N:[of] course ((nod+)) 
 3 P:=what's going to happen and (.) 
 4 N:right ((nod+)) 
 5 P:°like[that]° (.) 
 6 N:[mmm] 
 7 P:°it's[okay]° ((nod+, vo–)) 
 8 N: [that's] right (.) ((glance at papers: doctor's 
 9 name)) is is an excellent surgeon so in that 
 10 respect you can definitely (.) ((vo–)) feel 
 11 safe ((nod+)) that 
 12 P:yes of course I am 
 13 N:mmm 
 14 P: and and absolutely 110% (.) I trust that (.) 
 15 the thing is that (.) this is small case for 
 16 him but this is a horribly big thing for me…

The nurse's comment about the operating surgeon contains an allusion to fear of surgery. Instead of soothing the patient by telling her not to be afraid or asking if the patient is scared, the nurse indirectly comments on the doctor's professional skill (line 9) and emphasizes the expertise as a guarantee of success (line 10 and 11). Thus, the nurse allows the patient to save face when she leaves her to interpret her words. Her indirectness implies politeness and gives the patient options: if she does not want to deal with her fear, she may choose not to take the hint [see ( Brown and Levinson, 1987 )]. Here, politeness can also be linked to and interpreted through empowering practice, where the nurse holds the patient in high regard [ cf . ( van Ryn and Heaney, 1997 )].

The extract might have been interpreted as an example of the nurse cutting the patient off if one had not seen the videotape. Our interpretation is supported by a number of factors. First of all, the entire conversation until this extract has been tranquil and calm, the nurse has spoken and asked questions at a gentle pace, with pauses, and she has explored the patient's experiences. In this extract, the situation is similar, and she looks at the patient and nods. She speaks quite slowly, and her voice is low, friendly, and convincing ( van Ryn and Heaney, 1997 ). We can also see that the patient completes her speech by pausing (lines 3 and 5) and lowering her voice (lines 5 and 7). Therefore, after the nurse's words (lines 8–11), the patient presents her fear for discussion (lines 15 and 16) and also returns to the matter later during the interview. The extract shows how the issue has been constructed together by the nurse and the patient. The nurse raises the theme in a sensitive and non-threatening manner, and the patient continues the same topic. It also shows that the relationship is confidential enough for the patient to disclose her concerns and become aware of her own understanding, and thus contributes to empowerment. Salmon ( Salmon, 1993 ) has stressed that the main goal in the discussions between nurses and patients before surgery is not to reduce the patients' fears but to help them to deal with them.

Indirectness is a polite feature of discourse. There is `strategic indefiniteness' in indirectness that offers patients an opportunity to continue a discussion according to their own wishes ( Brown and Levinson, 1987 ). In general, nurses' empowering acts are mostly manifested in the form of questions ( Poskiparta et al. , 2000 ). In some cases, an indirect comment by a nurse, instead of a question, may encourage patients to talk about topics that they fear. Here it generates reflection in the patient. After disclosing her concerns, the patient analyzes the situation and recounts the conversation that she had with the doctor who explained the reason for her back surgery ( Extract 3 ).

Extract 3 .

1 P:this morning ((doctor's name)) said that 
 2 N:`this morning' ((surprised)) 
 3 P:this morning 
 4 N:that's recent for sure 
 4 P:yes 
 5 N:well it happened so 
 6 P: so it happened suddenly because yesterday 
 7 it became evident that (.) there was in the 
 8 X-ray ((doctor's name)) said that there was 
 9 a cause when I asked if there was anything 
 10 that caused the pain or if I was just imagining 
 11 it (.) so he said that yes there was a 
 12 genuine cause…

The amount of information given always depends on the situation and the nurse needs to continually evaluate the patient's needs: what it is that the patient knows, wants to know and how much she does want to know. This is also important because there are several persons that the patient sees before surgery ( Breemhaar et al. , 1996 ). Furthermore, nurses and doctors may deal with the same issues in their counseling. In Finland, the doctors, the surgeon and the consultant anaesthetist inform patients about the medical facts, risks, and benefits of operations. The patient also has an interview with a nurse on the surgical ward and, in addition to these encounters, there will occasionally be an encounter with a nurse anesthetist.

The nurse's empowering approach is manifested in how she raises issues or questions from time to time as if with hesitation. A pause precedes questions [`I don't have any (.) questions to ask you any more but do you—you have anything to ask from me like such things about tomorrow that worry you') ((looks at the patient))]. She asks the questions more quietly than normal and looks at the patient. According to Beck and Ragan's ( Beck and Ragan, 1992 ) study, nurses' softening words and their hesitant and tentative manner of speaking indicate discretion and tact and are aimed at not embarrassing patients. In our data, slow and hesitant speech also encourages the patients to comment more than nurses' more usual and brief question does: `Do you have any questions?'.

The nurse's tentative manner of asking questions makes it easier for the patient to start dealing with her concerns. She repeatedly pauses briefly and, in addition to the closed questions in the medical history questionnaire, she asks open-ended questions that explore the patient's experiences: `What kind of memories do you have of previous operations?' `Is there anything else you remember (.) is there something?'. Open-ended questions encourage the patient to speak and participate, e.g. in the naming and solving of a problem [ cf . ( Feste and Anderson, 1995 ; van Ryn and Heaney, 1997 )]. In this particular case, indirectness and hesitation are polite speech formulae that help the patient to save face ( Fairclough, 1992 ). They can also serve as empowering strategies that provide unconditional positive regard and acceptance for patients.

Despite these quite extensive empowering acts, the nurse subsequently evaluated her information skills only. She indicated how difficult it was for her to decide what kind of information to give to the patient:

I wondered if I should have maintained a more professional role, I mean more facts, if the patient got all that she wanted. Because this is not really medical science, you know, that's up to the doctor. It has to happen on the patient's terms, what she wants to know. I tried to check the patient's needs several times.

The content of the session satisfied the patient as well:

I got enough information about the operation, things that occupied my mind, so I didn't, she even told me before I asked. There's nothing to find out any more. As I said to her, I'm terribly afraid but I'll go ahead with confidence.

The nurse's way of posing questions builds up interaction. With her questions she steers the discussion thematically. This is how she controls the conversation. On the other hand, it is the patient who determines the content of the discussion. Her answers are reflective and bring up new issues. When the patient speaks, the nurse supports her with various feedback (e.g. Extracts 2 and 3) `mmm, right, of course, yes, exactly' and sometimes by paraphrasing. She nods a lot, bends toward the patient and looks at her. The feedback also occasionally includes completing the patient's sentences. According to van Ryn and Heaney ( van Ryn and Heaney, 1997 ), such non-verbal cues signal acceptance and, according to Caris-Verhallen et al. ( Caris-Verhallen et al. , 1999 ), they are patient-centered. With her feedback the nurse shows that she is there to listen to the patient, that she does not want to interrupt. Her feedback encourages the patient to speak in a similar way as in the doctor–patient conversation of an alternative medical interview described by Fairclough ( Fairclough, 1992 ). The patient interprets the feedback as encouragement, goes on to discuss the matter, and indicates her intention to continue by using the expressions `What I have been wondering…', `I did that when…' and `on the other hand, it's…'. This is how the nurse supports the patient's right to speak, which is not necessarily typical of a medical conversation ( Fairclough, 1992 ). The nurse's multi-facetted listening feedback is empowering, and this can be seen here and there in the data [see also ( Poskiparta et al. , 2000 )]. In this encounter, the feedback is exceptional because it disregards the participant's status. Generally, this type of feedback is directed to the dominant person ( Hakulinen, 1989 ). In a medically oriented environment, the hospital staff are viewed as superior to patients in knowledge ( van Ryn and Heaney, 1997 ; Tones, 1994 ). In this particular case, the nurse's listening feedback manifests power sharing.

When the patient discusses the reason for her admission to the hospital, the nurse builds up a positive, healthier vision of the future through other patients' experiences ( Extract 4 ). She makes her professional knowledge and expertise available to the patient ( Williams, 1995 ; McWilliam et al. , 1997 ). This lends a touch of reality and possibly builds on the patient's strengths ( van Ryn and Heaney, 1997 ) in this situation. The nurse attempts to dispel the patient's concerns about the risks of the operation. Her tone is convincing, and her non-verbal messages also inspire confidence: she looks at the patient, reinforces her message by nodding her head and gestures with her hands. Encouraged by the nurse, the patient can have a vision of her postoperative future.

Extract 4 .

1 N:these these ((ha+)) back operations are 
 2 like such that patients in them are usually 
 3 really grateful ((nod+)) after the operation 
 4 because if the operation like succeeds and 
 5 something is found (.) then the pain will be 
 6left in the operating room (.) ((ha+)) and 
 7 in that in that this is like like different from 
 8 other operations (.) and then because the 
 9 woundpainisinthebacksomehowit's 
 10 different than in here if the wound was here 
 11 inthestomach(ha+))andit'snotthatthat 
 12bad when it is if[you]= 
 13 P:[yeah] 
 14 N:=afterthosestomachoperationsyouoften 
 15 often hear that these patients who have had 
 16their back operated are such fortunate 
 17((nod+)) cases in the sense [that]= 
 18 P:[yeah] ((nod+)) 
 19 N:= because the pain will be left in the 
 20 operating room and and that's it then 
 21 ((nod+/ha+))

The nurse encourages the patient to examine her life at some hypothetical future point of time when the operation will have succeeded. Hypothetical questions encourage patients to discuss issues that they fear [ cf . ( Peräkylä, 1995 ; Tomm, 1987 )], while a hypothetical positive situation encourages patients indirectly. In this case, discussing the past would not calm the patient but rather lead her thoughts to the incident that caused her hospitalization. The vision of the future that the nurse provides to the patient with may help relieve her. A positive example is an empowering message and displays the nurse's understanding of the patient's anxiety. This vision can tap new resources in the patient for facing the future that is suddenly uncertain [ cf . ( van Ryn and Heaney, 1997 )]. Some manifestations of this can be seen in the patient's words: `…I'm very happy that if it's going to be over (.) yes I'm ready though I feel nervous' or `…I'm going ahead with confidence…'. A skilful use of future focus by the nurse helps the patient to find new solutions to her problems [ cf . ( Tomm, 1987 )]. As Atwood ( Atwood, 1995 ) suggests, confining the clients' thoughts to their problems is not sufficient in therapy work (focus on the past). In addition, we need to assist clients to expand their outlook by re-visioning their lives (future focus).

The encounter that is presented here as a case study demonstrates empowering nursing practice in hospital. It is a concrete example of a discussion during which the official and formal nature that characterizes the role of an institutional nurse is not emphasized. It actually emphasizes partnership and reciprocal conversation [ cf . ( van Ryn and Heaney, 1997 ; Poskiparta et al. , 2000 )], with the nurse's social interaction skills at the heart of the encounter [ cf . ( Wiles, 1997 )]. The patient is free to discuss her thoughts, concerns, experiences and even fears with the nurse, and the nurse adopts an empowerment strategy in order to facilitate the patient's participation. This encounter included the following empowering practices: (1) opening the session in an encouraging and constructive manner, which improves the atmosphere, (2) tactful exploration when examining the patient's need for information and concerns for surgery, (3) active, power sharing listening, and (4) building up a positive vision of the future.

The descriptions of empowerment strategies reported by van Ryn and Heaney ( van Ryn and Heaney, 1997 ) support our findings. However, we agree with Northouse's ( Northouse, 1997 ) criticism that the reported strategies are not completely separated. In our study, empowerment was manifested through intimacy and mutual respect. The nurse's encouragement of the patient's participation and her attempt to share power signaled acceptance, and perhaps gave the patient new insights for controlling her feelings about the impending surgery. Furthermore, the perceptions of active listening feedback and questioning are consistent with our previous studies ( Poskiparta et al. , 1998 , 2000 ; Kettunen et al. , 2000 ), where we found them to be a means of activating patients' self-evaluation and self-determination. In this study, we did not find evidence for empowering stories or questions that relate to patients' personal philosophy, as mentioned by Feste and Anderson ( Feste and Anderson, 1995 ). In addition, the nurse's encouragement was more sophisticated than what Feste and Anderson suggest with their empowering tools.

Our research data consisted of only one videotaped session per patient. Thus we have no evidence about how patients' decision-making skills develop or their self-esteem improves. During the interviews we did not ask the patients' opinion on the effects of counseling and that is why the patients evaluated conversations at a quite general level. In this particular case, the patient said that an encounter was ` illuminating ' for her. She mentioned that she received enough information and again spoke about her fears but used the same words as the nurse did when she emphasized a positive vision of future (see Extract 4 , lines 5, 6, 19 and 20): `if it's a fact that the pain will be left in the operating room, if it really is possible…that there's going to be an operation and they'll do it tomorrow, then that's how it's going to be'. This could, perhaps, signify some kind of relief or new resources to face an uncertain future. During the interview it also became evident that the patient's fears had not been diminished, but she talked about them and stressed a strong reliance on the professionals and on the operation as a whole: `I believe what I'm told'. This is in line with the perspective of Salmon ( Salmon, 1993 ), who emphasized that patients' anxiety about surgery should not be seen as a problem but rather as a normal phenomenon, a sign of patients' emotional balance, of an ability to feel fear. Thus, the nurse's task is not to diminish the patient's fears but to facilitate the patient's disclosure and offer help for dealing with fear.

With caution, we can speculate on the factors behind this kind of empowering practice, which became evident during the subsequent interviews. There was no evidence that nurses' or patients' age, education or work experience influenced the format of the counseling. What makes this case different from traditional rigid counseling sessions is that the nurse had a goal that she had planned in advance and pursued flexibly. This indicates that she had reflected on the significance of this situation from the patient's perspective. In most cases, nurses approached counseling without any goal or the hospital provided a detailed agenda based on professional knowledge of diseases, their care and prevention. Then, different kinds of institutionalized health counseling packages seemed to restrict nurses' communication, and health counseling often followed the standard institutional order of phases mentioned by Drew and Heritage ( Drew and Heritage 1998 ).

This study highlights empowering opportunities that arise in actual situations and that nurses can consciously use in their work. The results of this study can be applied to other health counseling practices and we would argue that every nurse should consider how (s)he initiates discussion. The analysis of the encounter shows that a tentative discussion style gives the patient a chance to deal with her concerns and to absorb the information that she needs. Thus, the patient has an opportunity to participate more actively in the discussion from the beginning than she could in the case of filling out a questionnaire in a strict predetermined order.

Clearly there are limitations to the generalizability of these findings. For example, both interlocutors were women, and this could in part explain the nature of the conversation since the highest levels of empathic and positive behavior occur between females [see ( Coates, 1986 ; Roter and Hall, 1993 ), p. 63]. There is also some concern whether the nurse may have been subject to a performance bias because she was aware of being videotaped and possibly behaved differently. However, we think that this was limited because only two nurses discussed this type of bias in the interviews afterwards and other nurses did not even notice the camera or did so only briefly at the beginning of counseling [see also ( Caris-Verhallen et al. , 1998 )]. Techniques to enhance the credibility of the findings included data and methodological triangulation of research data ( Patton, 1990 ; Stake, 1994 ; Begley, 1996 ), and acquiring data that included both verbal and non-verbal communication from the videotaped health counseling sessions and the subsequent interviews. In addition, team analysis sessions (investigator triangulation) ensured the accuracy of data interpretation (Polit and Hunger 1995). Different expertise helped us to get more complete picture from this case and empowerment philosophy when we discussed interpretations together.

However, in the last analysis, the effect of an empowering encounter could be checked after the operation by checking the patient's perspective, e.g. her satisfaction, recovery rate, etc. Evidence from nursing and medical staff might also be offered as additional evidence. Further research from larger numbers of patients is needed and more evidence from different settings will be required for a more extensive description of empowering practice. We will continue our research, and, for example, present qualitative analysis of interaction by describing how power features and patients' taciturnity are manifested in nurse–patient counseling. In addition, we will investigate how student nurses make progress in empowering counseling.

We suggest that nurses should pay attention to verbal expression and forms of language, in addition to non-verbal messages, because then they can empower patients by opening new and important perspectives for them. Nurses' every question, remark or piece of advice leads to individualized understanding and interpretation by the patient. It is important to remember that each communication situation is a unique, dynamic and transforming process. Nurses should observe what figures of speech they use and thus gain self-awareness and discover new tools to work with. We suggest a training program where the development of health care professionals' empowering skills can occur in practical, dynamic communication situations, be videotaped and transcribed for later theoretical, conscious and instructive evaluation. Analyzing the transcripts of video or tape-recorded counseling sessions opens up the possibility of an exact evaluation of empowering skills.

In health counseling, it is important that patients are able to maintain and strengthen a positive image of themselves as communicators. Positive experiences build up patients' self-esteem and increase their confidence in their ability to influence their care. The mere opportunity to discuss one's opinions and interpretations or different health concerns with a nurse may have the effect of unlocking patients' mental resources. This article demonstrates particularly how unconditional acceptance and facilitation of participation can be used in interpersonal counseling [see ( van Ryn and Heaney, 1997 )]. The empowering practices that are presented in this article should not be regarded as rigid and formalistic, rather they should be adapted to one's personal style.

Empowering principles of interpersonal practice ( van Ryn and Heaney, 1997 )

This study was supported by the Ministry of Health and Social Affairs of Finland and by the Finnish Cultural Foundation. We are sincerely grateful to all that participated in this study.

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• Research article
• Open access
• Published: 16 April 2019

Recovery-focused mental health care planning and co-ordination in acute inpatient mental health settings: a cross national comparative mixed methods study

• Michael Coffey   ORCID: orcid.org/0000-0002-0380-4704 1 ,
• Ben Hannigan 2 ,
• Sally Barlow 3 ,
• Martin Cartwright 4 ,
• Rachel Cohen 5 ,
• Alison Faulkner 6 ,
• Aled Jones 2 &
• Alan Simpson 3 , 7  

BMC Psychiatry volume  19 , Article number:  115 ( 2019 ) Cite this article

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Involving mental health service users in planning and reviewing their care can help personalised care focused on recovery, with the aim of developing goals specific to the individual and designed to maximise achievements and social integration. We aimed to ascertain the views of service users, carers and staff in acute inpatient wards on factors that facilitated or acted as barriers to collaborative, recovery-focused care.

A cross-national comparative mixed-methods study involving 19 mental health wards in six service provider sites in England and Wales. This included a survey using established standardised measures of service users ( n  = 301) and staff ( n  = 290) and embedded case studies involving interviews with staff, service users and carers ( n  = 76). Quantitative and qualitative data were analysed within and across sites using descriptive and inferential statistics, and framework method.

For service users, when recovery-oriented focus was high, the quality of care was rated highly, as was the quality of therapeutic relationships. For staff, there was a moderate correlation between recovery orientation and quality of therapeutic relationships, with considerable variability. Staff members rated the quality of therapeutic relationships higher than service users did. Staff accounts of routine collaboration contrasted with a more mixed picture in service user accounts. Definitions and understandings of recovery varied, as did views of hospital care in promoting recovery. Managing risk was a central issue for staff, and service users were aware of measures taken to keep them safe, although their involvement in discussions was less apparent.

Conclusions

There is positive practice within acute inpatient wards, with evidence of commitment to safe, respectful, compassionate care. Recovery ideas were evident but there remained ambivalence on their relevance to inpatient care. Service users were aware of efforts taken to keep them safe, but despite measures described by staff, they did not feel routinely involved in care planning or risk management decisions. Research on increasing therapeutic contact time, shared decision making in risk assessment and using recovery focused tools could further promote personalised and recovery-focused care planning.

This paper arises from a larger study published by National Institute for Health Research (Simpson A, et al, Health Serv Deliv Res 5(26), 2017).

Peer Review reports

Improving the treatment and care of people with mental illness is amongst key priorities for health and social care in both England and Wales [ 1 ]. However, despite the shift to community-based models of care, considerable resources are still spent on acute inpatient beds: as much as £585million in 2009–10 [ 2 ].

In England in 2016–17, 101,589 people in contact with mental health and learning disability services spent time in hospital, with an estimated 45,864 people detained under the Mental Health Act (MHA) 1983 [ 3 ]. In Wales, 8723 admissions to hospital for mental illness took place in 2016–17, with 1776 of these taking place using sections of the MHA 1983 [ 4 ]. This volume of admissions requires considerable planning and coordination to ensure effective care is delivered consistently.

Health care is a devolved responsibility in the UK meaning that the context and delivery of mental health care is diverging between countries, providing a rich geographical comparison for research. In England the care programme approach (CPA), and in Wales care and treatment plans (CTPs), oblige providers to: comprehensively assess health/social care needs and risks; develop a written care plan; allocate a care co-ordinator; and regularly review care. CPA/CTP processes are now also expected to reflect a philosophy of recovery and to promote personalised care [ 5 , 6 ]. These similarities between CPA and CTP mask an important difference too however. CPA in England is central guidance while CTP in Wales is legislative and places legal obligations on health boards and local authorities. CTP in Wales uniquely has an associated code of practice, stipulating for example that only specifically qualified workers (e.g. registered mental health nurses, occupational therapists and clinical psychologists) can act as care co-ordinators [ 7 ].

The concept of recovery in mental health was initially developed by service users and refers to “a way of living a satisfying, hopeful, and contributing life even with limitations caused by illness,” while developing new purpose or meaning [ 8 ]. (p527) The importance of addressing personal recovery, alongside more conventional ideas of clinical recovery [ 9 ] is now supported in guidance for all key professions [ 10 , 11 , 12 , 13 ]. To this has been added the idea of personalisation. This aims to see people and their families taking more control over their support and treatment options, alongside new levels of partnership and collaboration between service users (or citizens) and professionals [ 14 ]. (p3) Recovery and personalisation in combination mean tailoring support to fit the specific needs of the individual and enabling social integration through greater involvement of local communities [ 15 ].

The CPA/CTP are central to modern mental health care [ 16 ] yet there are few studies that explicitly explore the practices of care planning and coordination in community services and even fewer focusing on inpatient care planning [ 17 ]. A relatively rare example of the former is the recently completed COCAPP study [ 18 , 19 ]. In the UK national quality statements include the requirement that service users can jointly develop a care plan with mental health professionals, are given a copy with an agreed date to review it, and are routinely involved in shared decision-making [ 20 ]. National policies [ 1 , 6 ] outline expectations of recovery and involvement in decisions about treatment. This holds true for both informal and detained inpatients, with a requirement that reasonable adjustments are made where necessary to ensure that people are supported to live as full and socially participative lives as possible [ 21 ]. However, national quality reviews reveal limited evidence of service users’ views being listened to, with concerns being raised that control and containment are prioritised over treatment and support [ 21 ].

Earlier national reviews across both nations found that service users remained largely mystified by the care planning and review process itself, with significant proportions not understanding their care plans, not receiving written copies of their plan and often not feeling involved in the writing of care plans and setting of goals [ 22 , 23 ]. Clearly, there are significant problems with inpatient care planning with the Care Quality Commission (CQC) noting “significant gap between the realities observed in practice and the ambitions of the national mental health policy” [ 21 ]. (p5) The House of Commons Health Committee [ 24 ] subsequently reported widespread concerns about delays in care planning and an imbalance between a focus on risk rather than recovery.

Previously, the Healthcare Commission [ 25 ] measured performance on 554 wards across 69 NHS Trusts providing mental health acute inpatient services. They found that almost two-fifths of trusts (39%) scored weak on involving service users and carers; 50% of care plans sampled did not record the service user’s views; and nearly a third of care records (30%) did not record whether or not the service user had a carer. A third of all care records sampled (33%) showed that community care coordinators provided input into the service users’ care review meetings only “some or none of the time”.

The aim of this study was to identify factors that facilitate or hinder recovery-focused personalised care planning and coordination in acute inpatient mental health settings. As an exploratory study guided by the Medical Research Council (MRC) [ 26 ] Complex Interventions Framework we aimed to generate empirical data, new theoretical knowledge and greater understanding of the complex relationships between collaborative care planning, recovery and personalisation.

We conducted a cross-national comparative study of recovery-focused care planning and coordination in inpatient mental healthcare settings, employing a concurrent transformative mixed methods approach with embedded case studies [ 27 ]. A full account of our methods is provided elsewhere [ 28 ].

In summary, our study was informed by systems ideas emphasising connections between macro, meso and micro levels of organisation [ 29 ]. Cross-national comparative research involves “comparisons of political and economic systems …and social structures” [ 30 ] (p93) where “one or more units in two or more societies, cultures or countries are compared in respect of the same concepts and concerning the systematic analysis of phenomena, usually with the intention of explaining them and generalising from them” [ 31 ]. (p1–2) In this study, devolved government and the emergence of similar but distinct health policy, legislation and service development in England and Wales provided the macro-level national context.

A case study method [ 32 ] allows the exploration of a particular phenomenon within dynamic contexts where multiple influencing variables are difficult to isolate [ 33 ]. It allows consideration of historical and social contexts [ 34 ] and is especially useful in explaining real-life links that are potentially too complex for survey or experimental approaches [ 35 ]. The definitions of the case studies were predetermined [ 36 ], focusing on selected NHS Trust/Health Boards. Data collection at this meso-level included identifying local policy and service developments alongside empirical investigations of care planning and inpatient care, recovery, personalisation, therapeutic relationships and empowerment, employing mixed quantitative and qualitative methods. This design is represented in Fig.  1 .

Diagram illustrating embedded case study design and integration of care planning and coordination in acute inpatient mental health settings

We selected six case study sites to match our earlier community study [ 18 ] so that comparisons and connections between community and inpatient services could be drawn [ 32 ]. These consisted of four NHS Trusts in England and two Local Health Boards in Wales that are commissioned to provide inpatient mental health services. In total 19 acute wards were selected for data collection. These sites reflected a mix of rural, urban and inner city settings in which routine inpatient care is provided to people with complex and enduring mental health problems. In each site, a single acute inpatient ward was chosen for further in-depth investigation and up to six service users, six multidisciplinary staff and four informal carers were sampled as embedded micro-level case studies [ 27 ]. Inclusion criteria for wards included that these were providing acute mental health care admissions facilities to the local adult population and had an established ward manager/team leader in post. Inclusion criteria for service user participants included that they were currently admitted to the in-patient facility, had been on the ward for a minimum of 7 days, 18 years or older, with a history of severe mental illness and able to provide informed consent. Staff inclusion criteria were staff working on inpatient wards involved in care planning or review. Full inclusion and exclusion criteria are provided elsewhere [ 28 ].

Sample size calculations

For the survey, an a priori sample size calculation was conducted using the G*Power software (version 3.1) [ 37 ]. The estimated sample size for service users was calculated for the global effect of a one-way multivariate analysis of variance (MANOVA) with six groups (sites), 17 outcomes (Recovery Self-Assessment Scale total (+ 5 sub-scales), Scale To Assess the Therapeutic Relationship total (+ 3 sub-scales), Empowerment Scale total (+ 5 sub-scales) and the Views of Inpatient Care Scale total), an α level of 0.05, power of 0.8 and a small effect size (f 2  = 0.029). This calculation suggested that a total of 276 service user participants was required.

We anticipated that with non-response and incomplete measures we would need to oversample, we therefore decided to recruit 300 service users ( n  = 50 per Trust/Health Board) and 300 inpatient staff ( n  = 50 per site). We anticipated that we would not achieve this sample size for informal carers and therefore aimed to recruit 150 informal carers ( n  = 25 per Trust/Health Board). This was because not every service user would have a carer, therefore analysis for the informal carers would be underpowered (estimated power was 0.44). The data for the informal carers was therefore anticipated to be exploratory.

Sample size calculations for qualitative interviews were based on previous research with similar populations by the co-investigators and others. Calculations were based on understanding of the practicalities and time commitments of recruiting and interviewing participants and analysing in-depth qualitative data; and the numbers required to feel confident that the findings would be transferable to other similar settings.

Instrumentation

The data collection measures reported in this paper are;

The Recovery Self-Assessment Scale (RSA) [ 38 ]: a 36-item scale measuring the extent of recovery-oriented practices. The scale addresses the domains of life goals, involvement, treatment options, choice and individually tailored services. Acceptable internal consistency of the RSA with Cronbach’s alpha has previously been demonstrated [ 18 ]. It was completed by service users, carers and ward staff. In the current study Cronbach’s alpha for the Total RSA scale for service users was 0.98 ( N  = 103) and for staff was 0.95 ( N  = 186); Life Goals subscale, for service users was 0.93 ( N  = 179) and for staff was 0.86 ( N  = 246); Involvement subscale, for service users 0.91 ( N  = 163) and for staff was 0.85 ( N  = 225); Diversity of Treatment options subscale, for service users was 0.81 ( N  = 172) and for staff was 0.77 (N = 225); Choice subscale, for service users was 0.81 ( N  = 217) and for staff was 0.68 ( N  = 254) and Individually Tailored Services subscale for service users was 0.85 ( N  = 159) and for staff was 0.71 ( N  = 253).

The patient and clinician versions of the Scale To Assess the Therapeutic Relationship (STAR-P and STAR-C) [ 39 ]: a 12-item scale assessing therapeutic relationships. A total STAR score is obtained by summing individual items. The subscales measure positive collaborations (possible scores 0–24), positive clinician input (possible score 0–12) and non-supportive clinician input in the patient version and emotional difficulties in the staff version (possible score 0–12). It was completed by service users and ward staff. Cronbach’s alpha for the total STAR-P scale for service users was 0.89 ( N  = 264) and for staff was 0.81 ( N  = 263); Positive Collaboration subscale, for service users was 0.92 ( N  = 279) and for staff was 0.81 ( N  = 269); Positive clinician input subscale, for service users was 0.72 ( N  = 282) and for staff was 0.56 ( N  = 268); and Non-Supportive clinician input subscale, for service users was 0.67 ( N  = 284) and for staff was 0.63 ( N  = 273).

The Empowerment Scale (ES) [ 40 ]: a 28-item questionnaire with five subscales: self-esteem, power, community activism, optimism and righteous anger. A total empowerment score is obtained by summing individual items and dividing them by the number of items. Subscale values can also be provided for ‘self-esteem-self-efficacy’, ‘power-powerlessness’, community activism and autonomy’, ‘optimism and control over the future’ and ‘righteous anger’. This scale was completed by service users. Cronbach’s alpha for the total Empowerment scale for service users was 0.82 ( N  = 255); Self-esteem-self-efficacy subscale, 0.91 ( N  = 272); Power-Powerlessness subscale 0.56 ( N  = 271); Community activism and autonomy subscale, 0.58 ( N  = 276); Optimism and control, 0.70 ( N  = 275) and Righteous anger, 0.40 ( N  = 281).

The Views of Inpatient Care Scale (VOICE) [ 41 ]: a 19-item patient-reported outcome measure of perceptions of acute mental health care that includes questions on involvement in care planning and ward round discussions. VOICE total score was obtained by summing individual item scores, possible total scores range from 19 to 114. The higher the total score for the VOICE the more negative the perception of the quality of care on the ward. It was completed by service users.

We further investigated internal consistency using alternative approaches, mean item-total correlations and Spearman-Brown prediction values (see Additional file  1 ). These additional analyses suggested that all subscales had acceptable internal consistency, although two subscales of the Empowerment Scale would merit further psychometric development.

We additionally conducted semi-structured interviews with ward staff, service users and carers. Interview schedules were based on our previous study and refined in consultation with our Scientific Steering Committee and Lived Experience Advisory Group (LEAG) and drawing on relevant literature. The aim of all interviews was to explore participants’ views and experiences of care planning and co-ordination, safety and risk, recovery and personalisation, and the context within which these operated. Care plan reviews and observations of ward rounds were also conducted but are not reported in this paper. In some cases participants on the case study sites completed surveys and research interviews but this was not a requirement of the study and the majority chose to participate in one part of the study only.

Research ethics

The study received NHS Research Ethics approval from the NRES Committee NRES Committee London – Fulham (Ref: 13/LO/2062) on 29th December 2014.

Considerable attention was given to ensuring the welfare of service user, carer and other participants and of the researchers. This included providing opportunities to pause or withdraw from interviews, assurances of anonymity and confidentiality and responding to concerns for people’s welfare.

Public and patient involvement (PPI) and study oversight

The study was developed and designed with full involvement of co-investigator and independent service user researcher (AF) and in consultation with SUGAR (Service User and Carer Group Advising on Research [ 42 ]). In addition, a Lived Experience Advisory Group (LEAG) met every 4/6 months during the study, consisting of seven service users and one carer with direct experience of inpatient mental health care.

The 12-member independently chaired Scientific Steering Committee (SSC) consisted of representatives with a clinical or research background from each of the participating NHS Trusts/Health Boards, as well as independent academics. One service user and one carer member also represented the LEAG.

Three Service User Researcher Assistants (SURAs)/Service User Project Assistants (SUPAs) were employed to recruit participants and conduct research interviews. All received training and ongoing support throughout the study.

Suitable local wards meeting inclusion criteria were identified with the assistance of local NHS Trust/Health Board principal investigators. Ward managers were approached by a researcher who explained the study, responded to any queries and invited them to participate. No service declined to take part. We sought approval to participate from two or three wards in each area and one of the three wards was then selected for in-depth case study of care planning including interviews. Each site was given a pseudonym to help maintain anonymity of participants. French names were chosen to avoid any accidental connection with English or Welsh sites or regions. The site names are:

All managers and ward staff involved in care planning or care plan review received written and verbal information about the study and were invited to participate in the survey (target n = 50 per Trust/Health Board).

Staff from participating wards were asked to identify service users who had been on that ward for a minimum of seven days, and who in their view potentially had the capacity to participate in the study. The service user was provided with written and verbal information by a researcher, who then ensured the person was able to provide informed consent to participate. Each participant was then given a survey pack to complete, with assistance if required. A thank you gift of £10 was given to service user participants on completion of the survey pack.

Ward staff were asked to give carer survey packs to carers (family members and friends) visiting service users on the ward (target n  = 25 per Trust/Health Board). The packs included an information sheet and a Freepost return envelope. Researchers working on the ward also approached carers to invite them to participate by completing measures.

Semi-structured interviews

Key personnel (registered nurses, ward managers, occupational therapists, psychologists and psychiatrists) were identified using purposive sampling to reflect meso and micro level functions. They were invited to participate in research interviews for the in-depth case study (target n  = 6 per case study ward; total n  = 36). Micro-level refers to the level at which face-to-face care is organised, provided and received. For our purposes meso-level refers to management functions that enable or structure micro-level work. Staff were given written materials describing the purpose of the study including the option to decline or withdraw at any time. Informed consent procedures were followed.

Service users approaching discharge were invited to participate in an interview about their experiences of care planning and jointly review their care plan (target n  = 6 per case study ward; total n  = 36). Informed consent procedures were followed. A thank you gift of £10 was given to service user participants on completion of the research interview.

Service users were asked to identify a carer (if applicable) to take part in an interview (target n  = 4 per case study ward; total n  = 24). Carers were contacted by telephone or when visiting, in the presence of the service user if possible. Informed consent procedures were followed.

Data management and analysis

Qualitative and quantitative data in each of the sites were considered on a within-group basis prior to a cross-case analysis aimed at identifying common themes and divergences. The between-group analysis of the quantitative data compared service users and staff across sites on key markers of the service user experience (recovery-oriented care, therapeutic relationship and empowerment). The quantitative analyses were conducted alongside the qualitative analyses in a convergent parallel design that facilitates the integration of mixed methods data [ 27 ]. Large scale survey data provides a broad picture while the interview data offers more micro detail. This is a pragmatic approach to mixed method research that can generate a more complete understanding of complex phenomena or processes. Quantitative and qualitative data analyses were conducted independently and subsequently synthesised to generate understanding of the links across micro, meso and macro levels than either approach could achieve alone.

Quantitative data

Data from the questionnaires were entered into SPSS version 21 [ 43 ] and distribution of the data assessed for normality using descriptive quantitative measures of skewness and kurtosis. There were few deviations from normality (2 of 27 scale outcomes exceeded the conservative criteria of +/− 1), one was small in the extent of deviation (within +/− 2) however one scale displayed larger deviation of skewness (Emotional differences subscale, Staff outcome on the STAR-C).

A missing value analysis was completed for the 27 scale outcomes. Moderate to high levels of missing data, not missing at random, were identified on a small number of items (mean level of missing data across the 27 scales/subscales was 20%, range from 6 to 55%). The service user version of the RSA questionnaire in particular had a moderate amount of missing data. Mean replacement was used to avoid unnecessary loss of cases from the analysis. The mean of the available items for the scale and participant were used for replacement of the missing values on the scale. A series of sensitivity analyses were conducted to determine what effect mean replacement would have in the primary analyses at different levels of replacement ranging from 20 to 50% replacement. Utilising a 50% mean replacement had no substantive changes in the key statistical parameters ( p -values and associated effect sizes) and the inferences drawn, therefore it was deemed appropriate to maximise the number of cases included in the analyses.

Descriptive statistics were calculated for the four measures (VOICE, RSA, STAR and ES). Where appropriate these scores were compared against reference values (VOICE, STAR and ES) or to the participant groups (RSA). Several unadjusted one-way Analysis of Variance (ANOVA) were conducted to compare differences between the six sites on the RSA, STAR, ES and VOICE measures. Subsequent Tukey post hoc tests were conducted to ascertain which measures differed between which locations. A series of one-way analysis of covariance (ANCOVA) were completed to adjust the analyses for potential confounders. The demographic variables that were chosen for service users were: age; gender; ethnicity and living status. Three care-related variables were chosen for service users: previous admissions; time in mental health services and time on the ward. The demographic variables that were chosen for staff were: age, gender, ethnicity, personal experience of mental illness and family experience of mental illness. Two clinical variables were also chosen: time working in mental health services and time working on the ward. The criteria for adjusted analysis between the ANOVA and ANCOVA were the p -value from the omnibus test, the adjusted means and the p-value from the post-hoc test. If the p-value from the omnibus test for the ANCOVAs were not substantively different from the ANOVAs then no further post –hoc analyses were completed. A series of independent t-tests were completed to determine if there were differences between service users and staff on the outcome measures.

Correlations of the service user data were completed to identify if there was a relationship between the scores on the outcome measures used. Six Pearson’s correlations were conducted to identify if there were relationships between the mean total scores for the measures RSA and VOICE; RSA and STAR-P; RSA and ES; STAR-P and ES; STAR-P and VOICE and VOICE and ES for all service user participants and by individual site. Cohen’s [ 44 ] effect sizes were used to describe the data (Small, r  = 0.10, medium r  = 0.30 and large r  = 0.50). A Pearson correlation was also completed for staff on the mean total scores for the RSA and STAR-C.

For all the ANOVA and ANCOVA analysis the statistical significance level was set at a level of 0.05. To account for multiple comparisons for the t-tests the significance threshold was raised to 0.005 to accommodate for the number of tests applied ( n  = 10).

Qualitative data

All digital interview recordings were professionally transcribed and checked against original recordings for accuracy and identifying information redacted, before being imported into QSR International’s NVivo10 qualitative data analysis software [ 45 ] for analysis using Framework method [ 46 , 47 ]. The Framework matrix used was developed a priori from the interview schedules, with sections focusing on organisational background and developments, care planning, recovery, personalisation, safety and risk, and recommendations for improvement. Each matrix section also had an ‘other’ column for the inclusion of data-led emergent categories. Once all charting was completed, second-level summarising was undertaken to further précis data and to identify commonalities and differences.

Data collection across the six sites is summarised in Table  1 and consisted of n  = 301 service users (target was 300), n  = 290 members of staff (target was 300), n  = 28 carers (target 150) completing survey measures.

We completed 31 research interviews with staff (target was 36), 36 with service users (target was 36); and nine with carers (target was 24).

Cross-site analyses will be presented for the four service user questionnaires (VOICE, RSA, STAR-P and ES) followed by a cross-site analysis of the two staff questionnaires (RSA and STAR-C).

Service users

To explore cross-site differences one-way ANOVAs of all total score and subscales were conducted and revealed that there were no global differences across the sites for any of the four measures. Table  2 shows the mean item scores, alongside the parameters of significance for service user participants.

For staff, one-way ANOVAs were conducted for the mean RSA and STAR-C total scores and the subscales (Table  3 ). There was a significant difference between the research sites in the mean RSA total score (F 5, 279) = 6.35, p  <  0.001, η 2  = 0.32) and the mean total score for the STAR-C (F 5, 273) = 3.02, p  = 0.011, η 2  = 0.23). There were also significant differences found in all of the mean item subscale scores of the RSA and the positive collaboration subscale for the STAR-C. Table 3 shows summary scores for staff.

When using Artois and Champagne as reference sites (the sites with the lowest scores) Provence and Dauphine sites scored significantly higher for the mean RSA total score indicating more recovery focused care (see Fig.  2 ). This scale measures some important perceptions that may have a significant effect on patient outcomes and concordance to care and collaboration with service users. Subsequent Tukey post-hoc tests revealed that staff in Artois (3.36, s.d. = 0.59) score significantly lower than Provence (3.76, s.d. = 0.56, p  = 0.009, CI.95–0.73, − 0.07, Cohen’s d = 0.69) and Dauphine (3.74, s.d. = 0.53, p  = 0.009, CI.95–0.70, − 0.06, Cohen’s d = 0.68). Staff in Champagne (3.21, s.d. = 0.46) score significantly lower than Provence ( p  <  0.001, CI.95–0.92, − 0.19, Cohen’s d = 1.07) and Dauphine ( p  <  0.001, CI.95–0.88, − 0.19, Cohen’s d = 1.07).

Mean Total RSA score for staff +_95% CI

STAR-C questionnaire

There were no significant differences in the staff responses across sites for the Positive Clinician Input subscale (F (5,272) = 1.53, p  = 0.182, η 2  = 0.16) and the Emotional Difficulties subscale (F (5,270) = 1.91, p  = 0.092, η 2  = 0.16) There were however significant differences found between sites for the Positive Collaboration subscale (F (5, 274) = 2.42, p  = 0.036, η 2  = 0.20) and the STAR-C Total score (F (5, 273) = 3.02, p  = 0.011, η 2  = 0.23).

STAR-C positive collaboration

Burgundy performs significantly better for the mean Positive collaboration subscale score than Artois (see Fig.  3 ). This scale measures some important perceptions around rapport and shared understanding of goals focused on mutual openness and trust. Subsequent Tukey post-hoc tests revealed that staff in Artois (17.17, s.d. = 2.65) score significantly lower on the subscale than Burgundy (18.86, s.d. = 2.57, p  = 0.019, CI.95–3.20, − 0.18, Cohen’s d = 0.65). There were no significant differences between all of the other sites on this subscale.

Mean Positive Collaboration subscale score for staff ±95% CI

STAR-C Total

Burgundy performs significantly better for the mean positive collaboration subscale score than Artois (see Fig.  4 ). This scale measures some important perceptions that may have a significant effect on patient outcomes and concordance to care and collaboration with service users. Subsequent Tukey post-hoc tests revealed that staff in Artois (36.08, s.d. = 4.18) score significantly lower on the subscale than Burgundy (39.33, s.d. = 4.31, p  = 0.011, CI.95–5.76, − 0.75, Cohen’s d = 0.77). There were no significant differences between all of the other sites on total score.

Mean STAR-C Total score for staff ±95% CI

Correlations between outcome measures

Pearson’s correlations were used for the service user survey scores to determine if there were associations between responses on the four scales. Table  4 shows that there is a strong negative correlation between the RSA and VOICE ( r  = −.70, n  = 285, p  <  0.001). This shows that there is an inverse association between the recovery-oriented focus and the negative perception of quality of care amongst service users meaning when recovery-oriented focus was high the quality of care was viewed highly. There is also a positive correlation between the RSA and the STAR-P ( r  = .61, n  = 282, p  < 0.001), indicating an association between the recovery-oriented focus and ratings of the quality of therapeutic relationships amongst service users. There is also a strong negative correlation between the STAR-P and VOICE scale ( r  = −.64, n  = 294, p  <  0.001). There is also an inverse association between the quality of therapeutic relationships and the negative perception of quality of care meaning that when therapeutic relationships are scored highly the perception of quality of care is also scored highly. There are negligible relationships between the RSA and ES; STAR-P and ES and the VOICE and ES.

A Pearson’s correlation was completed at the global level with all participants to determine if there were associations for staff scores between the responses on the two questionnaire scales. This correlation were completed using pairwise deletion. There is a small to moderate correlation between the RSA and STAR-C ( r  = −.28, n  = 279 p  < 0.001).

When comparing the correlation between the RSA and STAR-C (see Table  5 ) there is a considerable amount of variability across sites. There is a large correlation in Burgundy ( r  = 0.50, n  = 43, p  = 0.001). There are moderate or small to moderate correlations in Artois ( r  = 0.28, n  = 56, p  = 0.034), Languedoc ( r  = 0.35, n  = 47, p  = 0.015) and Provence ( r  = 0.28, n  = 56, p  = 0.034). Only small correlations were found in Champagne ( r  = 0.16, n  = 41, p  = 0.331) and Dauphine ( r  = 0.35, n  = 50, p  = 0.015).

Across all of the six research sites staff score significantly higher than service users on the scale to assess therapeutic relationships. In Burgundy and Dauphine the same pattern is present across all of the subscales. Positive clinician input was scored higher by staff than service users across the six sites (see Table 2 ).

Qualitative findings

Table 1 summarises the characteristics of each of the six meso-level case study sites and the types and quantity of data generated in each. Illustrative quotations used below are labelled with the initial of the site pseudonym; then ST, SU, or CA for staff, service user or carer; and their unique number, e.g. B-ST-001 (Burgundy-Staff-001).

Care planning and coordination

Staff across sites talked of the importance of collaborative care planning. Many also spoke of the value of plans being kept up-to-date with service users actively involved, and of plans being used as a way of collecting multidisciplinary contributions and of helping manage transitions between hospital and community. For example,

“[B]ringing a person’s care all together really, so it’s like a standard to work around, that it’s all centred around the patient’s care, so everything works for them in the best way, I think.” (L-ST-103)

However, staff, service user and carer interviews all revealed gaps between shared aspirations and realities, even where service users drew attention to receiving good quality care. Staff accounts of routine collaboration with service users in care planning contrasted with service user accounts which pointed to lack of involvement. In all sites some service users report that they were not involved in the planning of their care, were unaware of the content of their care plans or had not received copies, or did not feel a sense of care plan ownership. For example,

“There isn’t a treatment plan. There’s no treatment, there’s just containment. Walking to the shop to get a newspaper isn’t treatment. There’s no therapy here.” (C-SU-103)

Staff sometimes spoke of service users’ unwillingness or inability to collaborate in care planning, or of the barriers to collaborating brought about by the introduction of electronic records. Lack of a shared language was cited as a barrier in one inner city site (Dauphine). Staff in Burgundy said how the all-Wales CTP template was not well-suited to the short-term nature of acute hospital care with some domains (e.g., housing) emerging as higher priority than others.

“I think I struggle with the principles [of CTP] and how that fits perhaps into the ward – the confusion that still exists is very much present in terms of the fundamentals of it.” (B-ST-102)

Coherence and continuity in care across hospital and community interfaces were identified as important by many of those taking part, and examples of detailed and collaborative discharge planning involving staff and service users were given. Innovations were also described, such as ‘interim discharge summaries’. However, rapidly arranged discharges caused some concern with little time then available for considered planning, one service user recalled being ‘pulled in out of the blue’ to be told ‘right, you can go’ (P-SU-102).

Two types of care plan review were described: formal, typically weekly, multidisciplinary meetings chaired invariably by consultant psychiatrists and daily handovers where care on a more immediate basis was reviewed by staff. Formal ward rounds were described as key events by staff and as places where progress and plans could be reviewed in a multidisciplinary context. Service user views and experiences of these differed, within and across sites. For some they were helpful, serving as opportunities for catching up with psychiatrists and the whole multidisciplinary team.

“Sometimes you’ve got a load of people in there and you sort of feel a bit like you’re on stage, you know like the spotlight’s on you, sort of thing. But yeah. I’ve had problems with ward rounds but more recently things have been OK, I’ve been able to sort of express myself more.” (P-SU-104)

Some service users also described the opportunity to plan and prepare for formal ward round participation. Others spoke of limited time to fully consider their needs, of excessive jargon being used and of inflexibility over ward round scheduling.

Safety and risk

Assessing and managing risk were customarily seen by staff as central parts of the work of planning and providing care so that risk assessments were described as proliferating so much they were “ coming out of your eyeballs” (P-ST-101). Formal ward round-based review meetings were named as a place for risks to be discussed although not necessarily in the presence of service users. Some staff also talked of the particular issues surrounding risk and decision-making in the care of service users who were detained. Risks mentioned by staff included those to self and others, with some also noting the dangers of over-estimating risks and the importance of attending to strengths and of positive risk-taking.

“ if you let the risk rule over the actual care plan then you’re never going to get anywhere .” (L-ST-102)

Most service users talked of their safety being considered and attended to, sometimes giving specific examples of this in action (e.g., through removal of objects and the use of observations), even though risk assessments and management plans were often not actively discussed with them. Others did, however, talk of feeling unsafe in hospital and of asking for more staff.

Definitions and understandings of recovery varied amongst staff, service users and carers, as did views of the role of hospitals in promoting this. Participants, in many cases, were also aware of the disparate meanings of ‘recovery’. Some staff (e.g., in Artois) viewed recovery as problematic in the inpatient context, saying that this raised expectations or was too poorly understood to help effective care planning.

“ I think it’s about being realistic as well. … certainly it’s about fostering hope, looking for things as well, and working towards those things, but in an acute ward where people can’t … leave [the ward] ” (A-ST-106)

In Languedoc, antipathy to the idea of recovery was reported by some staff who challenged both its meaning and utility. Most service users said that hospital had helped (e.g., to stabilise medication), though some complained of having been largely left to their own devices or subjected to containment. The use of tools to aid recovery (e.g., Recovery Star) were occasionally mentioned (e.g., in Burgundy), but in most cases these were either not deployed or were described as being more suitable beyond the acute hospital care context. Service users and carers revealed a range of views around recovery, from the cure of symptoms, to the prospects of life without medication, to the idea of coming to terms with difficulties.

“getting rid of the voices and what I see. That’s my recovery” (P-SU-101).

• Personalisation

The term ‘personalisation’ was not a familiar one, with few revealing knowledge of personal budgets, “ It doesn’t mean anything, it just sounds like a made-up word .” (L-SU-102).

In all settings there was recognition of the idea that care and services should be oriented to the individual. Whilst some staff talked of inpatient care as being person-centred there was also widespread recognition of the challenges to this (e.g., tensions between different approaches to providing care, the fact that staff only get to know people as patients, and the relative (un)availability of resources). Within and across sites there were differences in service user views and experiences of individually tailored care. Some were clear that hospital had been pivotal in their care, “ without this place it would be the end of me ” (C-SU-105). Others were equally clear that their care had not been personalised, or talked of their care at home being more personalised. Carers gave positive accounts of care provided although most remained uncertain about the term personalisation,

“ I guess personalisation means the way her treatment was personalised for her and I guess it was, because everyone is different and everyone needs different help, but I don’t really know what you mean.” (P-CA-101)

The aim of this study was to identify factors that facilitate or hinder recovery-focused personalised care planning and coordination in acute inpatient mental health settings. The intention was to generate new theoretical knowledge and greater understanding of the complex relationships between collaborative care planning, recovery and personalisation.

Comparison and consideration of our survey results and interview data across sites provides some reason for optimism concerning the overall quality of mental health inpatient care but also indicators of areas where greater attention may be required.

We found no global differences across the six sites on the service user measures. The VOICE measure [ 41 ] examined service users’ perceptions of inpatient care and found marginally lower scores than the reference value [42]. However, the mean scores in all six research sites in this study were lower (so more positive) than those reported in a recently published study which examined different inpatient service models over a period from 2008 to 2010 [ 48 ]. We found that service users leaned towards a positive perception of the wards but there was wide variation within sites, suggesting a mix of views. These results converge with our research interview data showing service users being largely positive about their care, acknowledging being treated with dignity, respect and compassion. This was irrespective of legal status. Those carers interviewed also spoke positively about care provided and attitudes of staff.

Staff spoke of the challenges of collaborating on care planning with service users in severe mental distress or lacking insight and this is likely to include those formally detained. However, despite specific questions related to the legal status of services users, this was not explicitly identified as an issue perhaps reflecting the now high proportion of inpatients legally detained.

On ratings of the quality of therapeutic relationships, across all six sites staff consistently rated these relationships significantly more positively than did service users. The STAR-P measure used was initially designed for rating the one-to-one relationships that service users have with care coordinators in community teams [ 15 ] so it may be that, despite having a ‘named nurse’, the more dispersed nature of relationships with a number of ward staff over days and weeks, across shifts and 24-h care weaken any rating. Inpatient care also includes the greater likelihood of restrictions, limitations, rules and regulations necessary to provide a safe environment [ 49 ]. First- or second-hand experience of coercion and containment are also likely to be more prevalent in an inpatient setting [ 50 ]. Nevertheless, the need for further investigation to identify how positive relationships can be mutually achieved is indicated.

There was a strong perception across sites that staff were aware of policy drives to provide a greater focus on recovery, to provide respectful, compassionate and dignified care. Most staff articulated clear values and understandings reflecting core components of the focus on recovery as well as other initiatives that have been promoted in an attempt to improve inpatient services, such as the Royal College of Psychiatrists’ Accreditation for Inpatient Mental Health Services (AIMS) [ 51 ], Bright charity’s Star Wards [ 52 ] and most recently, the mental health nurse-led evidence-based intervention, SafeWards [ 53 ].

Staff participants suggested that severity of illness and/or lack of insight sometimes means that collaborative care planning is difficult to achieve, that there was often insufficient time to devote to this task, or that some service users were unwilling or unable to collaborate on care planning. Staff found it difficult to discuss care with service users especially where there was a mismatch in goals and expectations and limited advice on what a good care plan looks like or on how to identify achievable goals. Some of these barriers such as staff views on severity of illness have been found in other studies and highlighted in systematic reviews of barriers to involvement [ 54 ] and the consistency of this finding across our study sites can be read in a number of ways. First, it is undoubtedly the case that some people admitted to inpatient services are in severe distress and the process of discussing and negotiating a care plan in those first few days is unlikely to be a priority for them.

A second reading is that mental health professionals despite their claimed interest and support of involvement actually struggle to put this idea into practice and may need some guidance to achieve the aspiration of true collaboration. A possible contributor here was highlighted by both service users and staff and this relates to inflexible documentation and information technology on inpatient wards. In tandem these two elements prevent service users and staff writing care plans together as staff have to leave to type up a care plan once discussed, service users feel removed from the process and unable to alter the document which can often be presented to them without adequate explanation.

Services are also pressured to meet organisational demands and staff may simply not prioritise collaboration with service users. Service users report that time with staff is highly valued but for the most part was a limited resource. Time is an important and taken for granted feature of social life; it is used by individuals to impose order, understand and handle discontinuities [ 55 , 56 ]. A universal expectation reported by staff and service users in this current study was that individual one to one time would provide the means for problem resolution, help establish rapport and trust and ultimately engender a sense of collaboration towards preferred goals. However, time was a scarce resource and organisational schedules were reported to quickly over-ride those of the service user and their primary nurse.

Interprofessional ward rounds were of critical importance to service users and staff alike as the site for discussion, planning and review. Service users and staff may experience the timetabling of ward rounds differently, for example there may be diverse perceptions of scheduling delays or contradictory understandings of what happened [ 57 ]. For service users in our study ward rounds involved anxious hours waiting to be called, followed by sometimes short but overwhelming or intimidating experiences in the meeting itself [ 58 ]. It was noted that few service users were adequately prepared on what to expect. Some told us they had expected to meet only the doctor but found themselves shown into a room full of unfamiliar faces, others felt that their contributions were not valued or that they had been poorly treated. For people who are already distressed and anxious about their treatment or future outcomes it seems ward rounds handled poorly can worsen their sense of efficacy and discourage attempts to achieve involvement.

Both staff and service users said that reviewing care plans in ward rounds would help mark progress towards agreed goals. This finding from our research interviews aligns with our quantitative survey showing that participants rated highly the recovery language used by staff and the regular monitoring of progress towards recovery goals. Additionally, the information needs of service users could be better met by helping them prepare for ward rounds, including determining expectations and the agenda. In addition it was suggested to us that service users be given summaries of ward round outcomes.

Recovery, therapeutic relationships and care planning

The focus of recovery for many service users was around medication and symptom suppression (perhaps reflecting the primary focus of inpatient care) indicating a more ‘clinical’ as opposed to a ‘personal’ concept of recovery [ 9 ]. In some sites, there was greater ambivalence around the suitability or relevance of ‘recovery’ in inpatient care, particularly where people are very unwell. There may be tensions with working in recovery-focused ways when people are formally detained. It is possible however that this is the very time where a recovery-focused approach would be most powerful.

Our data on recovery shows convergence between results from standardised measures and findings from qualitative research interviews. Across five of the six sites service user participants rated highly the use of recovery language from workers and services alongside their perspective that workers believe that people can recover and participate in their own life choices. Service users also rated highly that there is regular monitoring of progress towards their recovery goals. Workers rated these items highly too suggesting that notions of recovery and therapeutic optimism were supported. Qualitative data indicate staff recognised the complex and individual nature of recovery. For example some staff saw a more recent orientation towards recovery focused care as representing the shift from previous authoritarian and prescriptive asylum based care to more collaborative models that encourage patient and family involvement.

There was a strong association amongst service users between their perceptions of recovery-oriented care and their perception of the quality of care on the ward. Likewise there were close correlations between the therapeutic relationships and the perception of quality of care. These findings were robust and consistent across all research sites. Whilst it is not possible to determine which factor might be influencing which, it does suggest an important interrelationship between service users’ subjective valuing of their relationships with staff, the quality of inpatient care and the recovery-focus of the service.

Across all sites staff consistently scored practices as more recovery-oriented than did service users. Our interviews, however, revealed ambivalence and a range of staff perspectives on recovery in line with previous research [ 59 ]. The concern that recovery creates ‘unrealistic’ expectations can perhaps be read as anxiety about what services have to offer to achieve this desired outcome. It may be that participants are simply acknowledging that recovery opportunities are hindered in settings where insufficient space is afforded to wider structural and social issues that give rise to and maintain mental distress. All participants appear to recognise the non-linear complex nature of recovery but place the emphasis differently.

One site that scored recovery highly, Dauphine, had made local attempts to introduce innovations such as service user-focused ‘This is Me’ care plans and short summary ‘management plans’, but these are in addition to standard documents and care plans, adding to workload. Interestingly, in Wales service user participants recognized that their goals were being monitored on a regular basis. This was appreciated to a lesser extent in England with just one site scoring this highly which may be a positive indication of the use of the structured care and treatment plan (CTP) approach in Wales.

Risk and safety remain key concerns for mental health workers [ 60 ] and issues around safety and risk are reported to be central to inpatient work for staff. In the mental health system more widely risk is constructed as an unwanted outcome arising from the actions or behaviours of individuals with mental health problems. In this sense risk is seen to emanate from the person who is seen as the chief agent of unwanted harmful behaviours. Harm does occur of course and mental health services appear to be chiefly concerned with harms from the person to themselves or others. For example, there are approximately 5500 suicides each year in the UK, 30% of which are known to mental health services [ 61 , 62 , 63 ]. Risk of suicide in the transition from inpatient care is now firmly established [ 64 ] and there is some suggestion that this risk has been transferred from inpatient to crisis resolution and home treatment services [ 65 , 66 ]. Harm to others is a much rarer event but nevertheless is likely to have significant negative consequences for the victim, the individual with mental health problems and their family, and the wider system including individual workers such that risk averse practice is common [ 67 ]. The pressure to ensure safety and avoid blame appears to be omnipresent in mental health services.

Coherence and continuity in care across hospital and community interfaces is known to be important in delivering safe, supportive mental health care [ 68 ] and were identified as important by many of those taking part in this study, with examples of detailed and collaborative discharge planning involving staff and service users given. Innovations were also described, such as ‘interim discharge summaries’. However, participants also reported rapidly arranged discharges with little time for discussion or planning. Decisions on movement through phases of inpatient treatment will in part depend on the presenting symptomatology of the person, an assessment of their risk status, their needs for treatment and an assessment of their post discharge needs such as accommodation [ 69 ].

Staff acknowledged tensions around sensitive discussions and especially with people detained. Workers openly acknowledged that this was to avoid difficult conversations but others seemed less aware that in denying service users access to knowledge about their risk that they are effectively excluding people from participation in decisions about their care [ 70 ]. Previously we have noted that workers position risk assessment as legitimate work despite limitations in the predictive power of these judgements as one way of gaining normative certainty [ 71 ].

Here, unlike in the community study [ 18 , 71 ], service users seemed to be more aware of their safety being considered and managed in that they understood why certain items were removed or restrictions were imposed. Some service users spoke of not feeling safe on wards as reported in previous studies [ 72 , 73 ] and this needs to be considered in ongoing discussions and policy developments on safe staffing [ 74 ]. It remained a curious finding that while workers saw risk assessment as central to their efforts that they appear to largely exclude the service user from meaningful discussions about these.

Drawing on the evidence presented here, personalisation is not widely recognized as a concept and not actively used in inpatient services by staff or service users, although there was wide discussion amongst staff of aiming to provide personal care or a personalised approach to care.

Staff spoke about some of the constraints and challenges in trying to work in a personalised way and these included a lack of resources, short ward stays, service users being formally detained, disagreements, risk behaviours, limited capacity, and a primary focus on medical treatment. It was recognised that to enable personalised care, it was necessary to have the time to get to know people as individuals and to provide some element of continuous care. Too often this was difficult to achieve in inpatient settings. Staff in the Welsh sites thought that the format of the CTP process and care plan was supportive of working in a personalised way and helped service users and staff get to know each other better.

Some service users were clear that their care was very personalized and that staff had considered their unique needs with several good examples provided. Others felt that inpatient care was more routine and standard for all and that individually tailored care was less possible in hospital, especially when people are detained. However, it was notable that some wards and staff were able to provide care in a more personalised way and support should continue to be given to achieve this everywhere. Personalisation is an integral component of a recovery-focused approach to mental health care and needs to be promoted and supported as such [ 75 ].

Strengths and limitations

Achieving our target numbers for each grouping on the survey was challenging. Service user numbers were achieved but fell just short for staff. To achieve our target recruitment figures we approached all eligible participants meaning that our sample was not randomly selected. Despite considerable efforts we were unable to recruit sufficient numbers of carers. Researchers in the field reported how few carers visit wards, often preferring to meet service users elsewhere. The difficulties of involving carers in studies of inpatient mental health services has been reported elsewhere [ 76 ] and poses a particular challenge for researchers keen to include the views of family members and friends.

Due to the nature of the survey it is not possible to make comparisons between responders and non-responders as we had no access to data for non-participants. There was a moderate level of missing data for the RSA scale completed by service users, possibly due to some of the difficult language used and the community focus of the measure. As a consequence, more detailed analysis of covariations within the data was restricted by lack of power.

The interview data is rich and the framework method provided a time-consuming but structured and visible method of organising, analysing and comparing that data within and across sites. We believe the framework method and detailed presentation of results supports the transferability of these findings to other similar services. The involvement of service users and carers throughout the study as researchers and advisors has also provided added value to the study through additional viewpoints and interpretations.

The findings of this cross-national, multi-site mixed methods study suggests positive practice is taking place within acute inpatient wards with evidence of a widespread commitment amongst staff to provide safe, respectful, compassionate care with strong values underpinning practice. Whilst ideas of recovery were evident amongst staff there was some uncertainty and discrepancy about the relevance of recovery ideals to inpatient care or the ability of people experiencing high levels of distress to engage in recovery-focused approaches. However, service users saw inpatient admissions as a necessary stage in stabilising their mental state, with medication an important component, and often appreciated the efforts that were made to keep them safe and to help them take the next tentative steps on their recovery. They also rate highly staff using recovery-focused language and values. Many spoke of care being personalised with examples given of staff being very responsive and considerate to particular needs or concerns. Carers often similarly described positive views of patient care. However, whilst service users valued the relationships they have with staff on the wards, they do not rate these as highly as staff. As discussed earlier, this is perhaps not surprising given all the tensions and anxieties associated with an inpatient stay, but this perhaps can best be summarised as ‘doing well, but could do better’.

Staff were clearly able to articulate the care planning processes and documentation required of them and described some of their frustrations with lengthy, unwieldy forms and at times distancing computerised systems that required more time in front of monitors than in conversation with service users. Most staff also spoke of their understanding and efforts to involve service users, and carers and families where possible, in the care planning process. However, most service users did not really appreciate the written care plan as an integral or important part of their experience and many did not have copies or could not find them. The majority of service users did not feel they had been genuinely involved in the process. Unfortunately, in relation to service users receiving sufficient time with nursing staff and being involved in planning their care, very little progress appears to have made since the report of the Healthcare Commission of nearly a decade ago [ 25 ].

Issues of risk and safety are ever-present in mental health services and it was clear that this was central to the work of staff, whilst they displayed an awareness of the sensitivities and challenges involved. Service users, and carers, were often aware of efforts being made by staff to keep them safe. However, involvement of service users in discussions about personal risk factors and safety is challenging and requires greater training and support to encourage staff to develop the skills and confidence to undertake such sensitive and important work with confidence.

Abbreviations

Analysis of Covariance

Analysis of Variance

Care Programme Approach

Care Quality Commission

Care and Treatment Planning

Empowerment Scale

Lived Experience Advisory Group

Multivariate Analysis

Multidisciplinary Team

Medical Research Council

National Health Service

National Research Ethics Service

Recovery Self-Assessment

Scientific Steering Committee

Scale to Assess the Therapeutic Relationship – Clinician version

Scale to Assess the Therapeutic Relationship – Patient version

Service User and Carer Group Advising on Research

Service User Project Assistants

Service User Researcher Assistants

United Kingdom

Views of Inpatient Care Scale

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Acknowledgements

All members of the Lived Experience Advisory Group, the Study Steering Group, the service user researchers and research staff who ensured the success of the study.

The project reported in this article was commissioned and funded by the National Institute for Health Research (NIHR) Health Services and Delivery Research Programme (HS&DR 13/10/75). The NIHR had no role in the design of the study and collection, analysis, and interpretation of data or in writing of the manuscript. The views and opinions expressed here are those of the authors and do not necessarily reflect those of the HS&DR programme, NIHR, the National Health Service (NHS) or the Department of Health and Social Care.

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MCo contributed to the design of the study, data collection, analysis, interpretation, write-up and final edit of the paper. BH contributed to the design of the study, data collection, analysis, interpretation, and write-up of the paper. SB contributed to data collection, led on quantitative analysis, contributed to qualitative analysis, interpretation, and write-up of the paper. MCa advised and contributed to statistical analysis and write-up of the paper. RC contributed to data collection, qualitative analysis, interpretation, and write-up of the paper. AF contributed to the design of the study, data collection, analysis, interpretation, and write-up of the paper. AJ led on the literature review and contributed to interpretation and write-up of the paper. AS contributed to the design of the study, analysis, interpretation and write-up of the paper. All authors read and approved the final manuscript.

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Coffey, M., Hannigan, B., Barlow, S. et al. Recovery-focused mental health care planning and co-ordination in acute inpatient mental health settings: a cross national comparative mixed methods study. BMC Psychiatry 19 , 115 (2019). https://doi.org/10.1186/s12888-019-2094-7

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• Care planning
• Inpatient care
• Therapeutic relationships

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Improving satisfaction in patients receiving mental health care: a case study

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• 1 Group Practice Division, Seattle, WA 98112, USA. [email protected]
• PMID: 21847711
• DOI: 10.1007/s11414-011-9252-0

Patient satisfaction is increasingly becoming an important component of quality for behavioral health care systems. The following report describes Group Health Cooperative's Behavioral Health Services department experiences over a 5-year period in moving from uncertainty about the value of patient satisfaction and the ability to positively impact patient ratings to achieving a significant improvement in patient ratings of satisfaction with mental health care. In this process, the Behavioral Health Department developed a deeper understanding of patient requirements and improvement strategies which could impact these requirements. A description of the results achieved along with the role of quality improvement processes in understanding and improving patient satisfaction in mental health care is presented.

• Continuity of Patient Care
• Focus Groups
• Mental Disorders / therapy
• Mental Health Services / organization & administration
• Mental Health Services / standards*
• Patient Satisfaction*
• Physician-Patient Relations
• Quality Improvement*

Case Study 1: Psych Patient in ED

Aaron Smith, age 20, is a psychiatric patient with bipolar disorder. At the request of his father, he is brought by police to the Emergency Department. This is his third visit to the ED for psychiatric treatment this year.

Personal History and Recent Events

Last month, Aaron was expelled from his college dorm due to aggressive behavior and substance abuse. He has moved back into his parents' home. Today, in an outburst, he put his fist through a wall and then turned his rage toward his father. His parents suspect he has stopped taking his medication for bipolar disorder.

Aaron's Demeanor upon Arrival

Aaron displays classic signs of potential to become violent. These include:

• disheveled appearance
• clenched fists

Cues from Hospital Records

A quick look at Aaron's hospital records reveals a history of violent behavior:

• Aaron is being treated for bipolar disorder with prescribed medications.
• He has had two other recent ED visits before this one: once for disruptive, violent behavior, and once for a drug overdose.
• He rated "high" for dangerousness on assessment from a previous visit.

Triage Reveals Suicidal Thoughts

The triage nurse questions Aaron to help determine the extent of present danger. After several prompts to get beyond surface answers, the nurse learns that besides his violent outburst at home, Aaron had planned to kill himself by crashing his car, which increases his risk of danger to others.

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Common mental health problems: identification and pathways to care

Clinical guideline [CG123] Published: 25 May 2011

This guideline has been stood down. All of the recommendations are now covered in other NICE guidelines, or are out of date and no longer relevant to clinical practice.

For guidance on common mental health problems, see our guidelines on:

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Case Study Research Method in Psychology

Saul Mcleod, PhD

Editor-in-Chief for Simply Psychology

BSc (Hons) Psychology, MRes, PhD, University of Manchester

Saul Mcleod, PhD., is a qualified psychology teacher with over 18 years of experience in further and higher education. He has been published in peer-reviewed journals, including the Journal of Clinical Psychology.

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Case studies are in-depth investigations of a person, group, event, or community. Typically, data is gathered from various sources using several methods (e.g., observations & interviews).

The case study research method originated in clinical medicine (the case history, i.e., the patient’s personal history). In psychology, case studies are often confined to the study of a particular individual.

The information is mainly biographical and relates to events in the individual’s past (i.e., retrospective), as well as to significant events that are currently occurring in his or her everyday life.

The case study is not a research method, but researchers select methods of data collection and analysis that will generate material suitable for case studies.

Freud (1909a, 1909b) conducted very detailed investigations into the private lives of his patients in an attempt to both understand and help them overcome their illnesses.

This makes it clear that the case study is a method that should only be used by a psychologist, therapist, or psychiatrist, i.e., someone with a professional qualification.

There is an ethical issue of competence. Only someone qualified to diagnose and treat a person can conduct a formal case study relating to atypical (i.e., abnormal) behavior or atypical development.

 Famous Case Studies

• Anna O – One of the most famous case studies, documenting psychoanalyst Josef Breuer’s treatment of “Anna O” (real name Bertha Pappenheim) for hysteria in the late 1800s using early psychoanalytic theory.
• Little Hans – A child psychoanalysis case study published by Sigmund Freud in 1909 analyzing his five-year-old patient Herbert Graf’s house phobia as related to the Oedipus complex.
• Bruce/Brenda – Gender identity case of the boy (Bruce) whose botched circumcision led psychologist John Money to advise gender reassignment and raise him as a girl (Brenda) in the 1960s.
• Genie Wiley – Linguistics/psychological development case of the victim of extreme isolation abuse who was studied in 1970s California for effects of early language deprivation on acquiring speech later in life.
• Phineas Gage – One of the most famous neuropsychology case studies analyzes personality changes in railroad worker Phineas Gage after an 1848 brain injury involving a tamping iron piercing his skull.

Clinical Case Studies

• Studying the effectiveness of psychotherapy approaches with an individual patient
• Assessing and treating mental illnesses like depression, anxiety disorders, PTSD
• Neuropsychological cases investigating brain injuries or disorders

Child Psychology Case Studies

• Studying psychological development from birth through adolescence
• Cases of learning disabilities, autism spectrum disorders, ADHD
• Effects of trauma, abuse, deprivation on development

Types of Case Studies

• Explanatory case studies : Used to explore causation in order to find underlying principles. Helpful for doing qualitative analysis to explain presumed causal links.
• Exploratory case studies : Used to explore situations where an intervention being evaluated has no clear set of outcomes. It helps define questions and hypotheses for future research.
• Descriptive case studies : Describe an intervention or phenomenon and the real-life context in which it occurred. It is helpful for illustrating certain topics within an evaluation.
• Multiple-case studies : Used to explore differences between cases and replicate findings across cases. Helpful for comparing and contrasting specific cases.
• Intrinsic : Used to gain a better understanding of a particular case. Helpful for capturing the complexity of a single case.
• Collective : Used to explore a general phenomenon using multiple case studies. Helpful for jointly studying a group of cases in order to inquire into the phenomenon.

Where Do You Find Data for a Case Study?

There are several places to find data for a case study. The key is to gather data from multiple sources to get a complete picture of the case and corroborate facts or findings through triangulation of evidence. Most of this information is likely qualitative (i.e., verbal description rather than measurement), but the psychologist might also collect numerical data.

1. Primary sources

• Interviews – Interviewing key people related to the case to get their perspectives and insights. The interview is an extremely effective procedure for obtaining information about an individual, and it may be used to collect comments from the person’s friends, parents, employer, workmates, and others who have a good knowledge of the person, as well as to obtain facts from the person him or herself.
• Observations – Observing behaviors, interactions, processes, etc., related to the case as they unfold in real-time.
• Documents & Records – Reviewing private documents, diaries, public records, correspondence, meeting minutes, etc., relevant to the case.

2. Secondary sources

• News/Media – News coverage of events related to the case study.
• Academic articles – Journal articles, dissertations etc. that discuss the case.
• Government reports – Official data and records related to the case context.
• Books/films – Books, documentaries or films discussing the case.

3. Archival records

Searching historical archives, museum collections and databases to find relevant documents, visual/audio records related to the case history and context.

Public archives like newspapers, organizational records, photographic collections could all include potentially relevant pieces of information to shed light on attitudes, cultural perspectives, common practices and historical contexts related to psychology.

4. Organizational records

Organizational records offer the advantage of often having large datasets collected over time that can reveal or confirm psychological insights.

Of course, privacy and ethical concerns regarding confidential data must be navigated carefully.

However, with proper protocols, organizational records can provide invaluable context and empirical depth to qualitative case studies exploring the intersection of psychology and organizations.

• Organizational/industrial psychology research : Organizational records like employee surveys, turnover/retention data, policies, incident reports etc. may provide insight into topics like job satisfaction, workplace culture and dynamics, leadership issues, employee behaviors etc.
• Clinical psychology : Therapists/hospitals may grant access to anonymized medical records to study aspects like assessments, diagnoses, treatment plans etc. This could shed light on clinical practices.
• School psychology : Studies could utilize anonymized student records like test scores, grades, disciplinary issues, and counseling referrals to study child development, learning barriers, effectiveness of support programs, and more.

How do I Write a Case Study in Psychology?

Follow specified case study guidelines provided by a journal or your psychology tutor. General components of clinical case studies include: background, symptoms, assessments, diagnosis, treatment, and outcomes. Interpreting the information means the researcher decides what to include or leave out. A good case study should always clarify which information is the factual description and which is an inference or the researcher’s opinion.

1. Introduction

• Provide background on the case context and why it is of interest, presenting background information like demographics, relevant history, and presenting problem.
• Compare briefly to similar published cases if applicable. Clearly state the focus/importance of the case.

2. Case Presentation

• Describe the presenting problem in detail, including symptoms, duration,and impact on daily life.
• Include client demographics like age and gender, information about social relationships, and mental health history.
• Describe all physical, emotional, and/or sensory symptoms reported by the client.
• Use patient quotes to describe the initial complaint verbatim. Follow with full-sentence summaries of relevant history details gathered, including key components that led to a working diagnosis.
• Summarize clinical exam results, namely orthopedic/neurological tests, imaging, lab tests, etc. Note actual results rather than subjective conclusions. Provide images if clearly reproducible/anonymized.
• Clearly state the working diagnosis or clinical impression before transitioning to management.

3. Management and Outcome

• Indicate the total duration of care and number of treatments given over what timeframe. Use specific names/descriptions for any therapies/interventions applied.
• Present the results of the intervention,including any quantitative or qualitative data collected.
• For outcomes, utilize visual analog scales for pain, medication usage logs, etc., if possible. Include patient self-reports of improvement/worsening of symptoms. Note the reason for discharge/end of care.

4. Discussion

• Analyze the case, exploring contributing factors, limitations of the study, and connections to existing research.
• Analyze the effectiveness of the intervention,considering factors like participant adherence, limitations of the study, and potential alternative explanations for the results.
• Identify any questions raised in the case analysis and relate insights to established theories and current research if applicable. Avoid definitive claims about physiological explanations.
• Offer clinical implications, and suggest future research directions.

5. Additional Items

• Thank specific assistants for writing support only. No patient acknowledgments.
• References should directly support any key claims or quotes included.
• Use tables/figures/images only if substantially informative. Include permissions and legends/explanatory notes.
• Provides detailed (rich qualitative) information.
• Provides insight for further research.
• Permitting investigation of otherwise impractical (or unethical) situations.

Case studies allow a researcher to investigate a topic in far more detail than might be possible if they were trying to deal with a large number of research participants (nomothetic approach) with the aim of ‘averaging’.

Because of their in-depth, multi-sided approach, case studies often shed light on aspects of human thinking and behavior that would be unethical or impractical to study in other ways.

Research that only looks into the measurable aspects of human behavior is not likely to give us insights into the subjective dimension of experience, which is important to psychoanalytic and humanistic psychologists.

Case studies are often used in exploratory research. They can help us generate new ideas (that might be tested by other methods). They are an important way of illustrating theories and can help show how different aspects of a person’s life are related to each other.

The method is, therefore, important for psychologists who adopt a holistic point of view (i.e., humanistic psychologists ).

Limitations

• Lacking scientific rigor and providing little basis for generalization of results to the wider population.
• Researchers’ own subjective feelings may influence the case study (researcher bias).
• Difficult to replicate.
• Time-consuming and expensive.
• The volume of data, together with the time restrictions in place, impacted the depth of analysis that was possible within the available resources.

Because a case study deals with only one person/event/group, we can never be sure if the case study investigated is representative of the wider body of “similar” instances. This means the conclusions drawn from a particular case may not be transferable to other settings.

Because case studies are based on the analysis of qualitative (i.e., descriptive) data , a lot depends on the psychologist’s interpretation of the information she has acquired.

This means that there is a lot of scope for Anna O , and it could be that the subjective opinions of the psychologist intrude in the assessment of what the data means.

For example, Freud has been criticized for producing case studies in which the information was sometimes distorted to fit particular behavioral theories (e.g., Little Hans ).

This is also true of Money’s interpretation of the Bruce/Brenda case study (Diamond, 1997) when he ignored evidence that went against his theory.

Breuer, J., & Freud, S. (1895).  Studies on hysteria . Standard Edition 2: London.

Curtiss, S. (1981). Genie: The case of a modern wild child .

Diamond, M., & Sigmundson, K. (1997). Sex Reassignment at Birth: Long-term Review and Clinical Implications. Archives of Pediatrics & Adolescent Medicine , 151(3), 298-304

Freud, S. (1909a). Analysis of a phobia of a five year old boy. In The Pelican Freud Library (1977), Vol 8, Case Histories 1, pages 169-306

Freud, S. (1909b). Bemerkungen über einen Fall von Zwangsneurose (Der “Rattenmann”). Jb. psychoanal. psychopathol. Forsch ., I, p. 357-421; GW, VII, p. 379-463; Notes upon a case of obsessional neurosis, SE , 10: 151-318.

Harlow J. M. (1848). Passage of an iron rod through the head.  Boston Medical and Surgical Journal, 39 , 389–393.

Harlow, J. M. (1868).  Recovery from the Passage of an Iron Bar through the Head .  Publications of the Massachusetts Medical Society. 2  (3), 327-347.

Money, J., & Ehrhardt, A. A. (1972).  Man & Woman, Boy & Girl : The Differentiation and Dimorphism of Gender Identity from Conception to Maturity. Baltimore, Maryland: Johns Hopkins University Press.

Money, J., & Tucker, P. (1975). Sexual signatures: On being a man or a woman.

Further Information

• Case Study Approach
• Case Study Method
• Enhancing the Quality of Case Studies in Health Services Research
• “We do things together” A case study of “couplehood” in dementia
• Using mixed methods for evaluating an integrative approach to cancer care: a case study

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Two studies offer key insights into the origins and potential treatment of mental health disorders

W orking under the umbrella of the PsychENCODE Consortium, the mental health research project established in 2015 by the National Institutes of Health, a team of Mount Sinai scientists has uncovered important new insights into the molecular biology of neuropsychiatric disease through two new studies published in a special issue of Science on May 24.

These investigations, conducted with colleagues from other major research centers, involve the largest single-cell analysis to date of the brains of people with schizophrenia, and a first-of-its-kind population-scale map of the regulatory components of the brain that provides critical insights into the pathogenesis of mental health disorders.

"We desperately need new directions for developing treatments for individuals with schizophrenia and other serious mental health illnesses," says Panos Roussos, MD, Ph.D., senior author of both studies; Professor of Psychiatry, and Genetics and Genomic Sciences, at the Icahn School of Medicine at Mount Sinai; and Director of the Center for Disease Neurogenomics.

"We now have the technology and methodology to do a deeper dive than ever before into the biology of neuropsychiatric diseases, and believe that through our latest research we have significantly advanced the field."

Since the launch of PsychENCODE, dozens of scientists from Mount Sinai along with colleagues from 14 other research institutions have identified several hundred new risk genes for mental disorders that include schizophrenia, autism spectrum disorder, and bipolar disorder. That body of work has also revealed critical time windows during brain development when these genes can most influence the disease process.

Findings from the first phase of PsychENCODE were published in Science in 2018. These studies were based largely on molecular data collected from previous work. The newest investigations break fresh scientific ground, as evidenced by the following two papers in Science led by Mount Sinai.

Single-cell analysis of schizophrenia brains

Using a high-resolution dataset of 468,000 single-cell transcriptomes from 140 individuals, researchers looked for cell type-specific schizophrenia-dysregulated genes, pathways, and regulators. The result was a more comprehensive and highly detailed understanding of the molecular alterations associated with schizophrenia—in effect, a reframing of schizophrenia transcriptional pathology.

"While we observed gene change expression within all detected cell types, the majority occurred in neuronal populations and, specifically, more than three-quarters in excitatory neurons, which constitute the bulk of the brain's neurons," says Dr. Roussos, who led the analysis with John Fullard, Ph.D., Assistant Professor of Psychiatry, and Genetics and Genomic Sciences, at Icahn Mount Sinai.

The collaboration included partners from the Eli and Edythe L. Broad Institute of the Massachusetts Institute of Technology and Harvard, which allowed the team to compare independent findings from different patient cohorts to verify their consistency from one dataset to another.

"After pinpointing the molecular changes, we were able to look one level up to identify the transcription factors that drive many of those alterations," explains Dr. Fullard. "That allowed us to identify important upstream regulators that could serve as targets for drug development."

Regulatory mechanisms underlying brain disease

This study of samples from the brains of individuals with and without neuropsychiatric diseases generated the largest epigenetic analysis to date of the human brain. That, in turn, led to a population-scale map of the regulatory components of the brain and their potential linkage to mental health conditions.

"We can now begin to understand how genetic variation among individuals might affect epigenetic regulation," says Biao Zeng, Ph.D., Instructor of Psychiatry, and Genetics and Genomic Sciences, at Icahn Mount Sinai and lead author of the study.

"As the field of gene therapy continues to progress, the linkage of risk loci for a wide range of psychiatric and neurological disorders with human brain regulatory regions holds great promise for therapeutic applications."

Notably, Dr. Zeng adds, genome editing technologies such as CRISPR can potentially target regulatory elements and modify their activity, potentially restoring regulatory mechanisms to a pre-disease state. "The combination of population-scale regulome studies and advances in gene regulation," he notes, "will undoubtedly provide important new avenues for treating brain disorders in the future."

Mount Sinai entities involved in the PsychENCODE Consortium include The Friedman Brain Institute, the Seaver Autism Center for Research and Treatment, the Department of Psychiatry, The Mindich Child Health and Development Institute, the Department of Genetics and Genomic Sciences, the Nash Family Department of Neuroscience, and the Icahn Institute for Data Science and Genomic Technology.

More information: W. Brad Ruzicka et al, Single-cell multi-cohort dissection of the schizophrenia transcriptome, Science (2024). DOI: 10.1126/science.adg5136 . www.science.org/doi/10.1126/science.adg5136

Special issue collection: www.science.org/collections/psychencode2

Provided by The Mount Sinai Hospital

• What We’re Learning About the Patient…

What We’re Learning About the Patient Navigator Role in Supporting Behavioral Health Access and Utilization: Discussing Insights with Dr. Jennifer Mautone

Date posted:.

In a 2023 blog post , we explored how pediatric researchers and clinicians are using patient navigation to support children and families in accessing behavioral health care. This approach builds on patient navigation research for children with special health care needs , which finds improved health and well-being for families and children when navigation services are available. Related to behavioral health, emerging research and pilot studies find families are more likely to complete mental health assessments, connect to care and to stay engaged in care once connected when they work with patient navigators.

Today, I am following up with my PolicyLab colleague Dr. Jennifer Mautone who works with patient navigators to connect families to health care providers and resources, provide brief interventions, support family engagement in care, advocate for the patient and family, or help the caregiver problem-solve. I sat down with her to learn more about what they are observing in their research and patient care.

In your research, how are you considering the navigators’ impact on patient care? What are you learning so far?

With our study about the effectiveness of an enhanced behavior therapy program for families of children with ADHD, Partnering to Achieve School Success (PASS) , we call our patient navigator a Community Health Partner (CHP). The CHP is part of the team and promotes family engagement in treatment and cultural effectiveness of care. In this role, the patient navigator is working to establish trust, listen attentively and use motivational interviewing strategies. We are seeing that the more contacts families have with the patient navigator, the more likely they are to attend therapy sessions. Behavioral health clinicians and families have also indicated that the patient navigator is an extremely helpful extension of the care team.

And what are you learning about the patient navigator role?  

In PASS , we are finding that the patient navigator spends most of their time working with patients’ families on scheduling, reminding them about appointments and assisting in overcoming barriers to care. Occasionally, the navigator supports parents with implementation of strategies they learn in therapy sessions, such as how to consistently provide positive attention to their children and limit their use of punishment. The patient navigator has also become involved in supporting family-school collaborations.

What do you see as priorities for future research related to patient navigators supporting families in engaging in behavioral health care?  

Our study is unique in that we are connecting children with ADHD to care and also providing the intervention, so our patient navigators are critical in supporting families’ initial attendance and ongoing engagement in care. We believe that higher levels of engagement will result in better child and family outcomes. As such, one question that we hope to answer is how the patient navigator role influences outcomes for children with ADHD.

Additionally, we are thinking about how this position could be sustained in the care team. We are exploring if these activities could be billable as part of collaborative care or case management, and we are collaborating with health systems leaders to consider other options for sustainability.

Putting this conversation into context

In reflecting on my conversation with Dr. Mautone about PASS and the context about other interventions that engage patient navigators, I noticed a few themes:

Patient navigators’ time is primarily focused on helping patients get to appointments and connect to resources responsive to families’ needs and what is available in the community. These roles might be able to be expanded to more fully support patient and family engagement in care and adherence to care plans.

Care teams are observing improved attendance at appointments. This metric is valuable and perhaps a major indicator of success as attributing the impact of patient navigation on the child’s health is complex. There is going to be variability in individual family needs and the subsequent referrals made. And, unless a standard intervention is offered—as is the case with PASS—the care received following the referral will be individualized, making it difficult to get a full understanding of the link between navigation and health outcomes.

Sustaining these service models will be reliant on a flexible reimbursement mechanism that can accommodate different applications and patient populations.

We also know that continued research related to patient navigator roles and their contributions to improved patient outcomes is needed to justify the cost of these professionals and sustain their involvement in clinical services. We look forward to continuing to explore how to best support families through this unique role.

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The “Difficult” Inpatient, a Qualitative Study of Physician Perspectives

• Original Research: Qualitative Research
• Published: 20 May 2024

Cite this article

• Jeffrey L. Jackson MD, MPH   ORCID: orcid.org/0000-0002-9820-5834 1 , 3 ,
• Mary G. Murphy BS 2 &
• Kathlyn E. Fletcher MD, MA 1 , 3  

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Previous studies exploring difficult inpatients have mostly focused on psychiatric inpatients.

To explore the characteristics of difficult medicine inpatients.

Qualitative study using focus groups and semi-structured interviews. Transcripts were recorded, transcribed, and coded (MAXQDA) using thematic content analysis.

Participants

Medicine inpatient providers at a tertiary care facility.

Key Results

Our sample consisted of 28 providers (6 hospitalists, 10 medicine attendings, 6 medicine residents, and 6 interns). Theme 1: Provider experience: Difficult inpatients were time-consuming and evoked emotional responses including frustration and dysphoria. Theme 2: Patient characteristics: Included having personality disorders or mental health issues, being uncooperative, manipulative, angry, demanding, threatening, or distrustful. Difficult patients also had challenging social situations and inadequate support, unrealistic care expectations, were self-destructive, tended to split care-team messages, and had unclear diagnoses. Theme 3: Difficult families: Shared many characteristics of difficult patients including being distrustful, demanding, manipulative, threatening, or angry. Difficult families were barriers to care, disagreed with the treatment plan and each other, did not act in the patient’s best interest, suggested inappropriate treatment, or had unrealistic expectations. Strategies: Approaches to dealing with difficult patients or families included building trust, being calm, and having a consistent message. Communication approaches included naming the emotion, empathetic listening, identifying patient priorities and barriers, and partnering.

Conclusions

Difficult patients induced emotional responses, dysphoria, and self-doubt among providers. Underlying personality disorders were often mentioned. Difficult patients and families shared many characteristics. Communication and training were highlighted as key strategies.

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Managing Difficult Patients: Roles of Psychologists in the Age of Interdisciplinary Care

Establishing a Collaborative Care CBT Milieu in Adolescent Inpatient Units

How primary care clinicians process patient death: logistics, emotions, and opportunities for structural support, data availability.

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Jackson, J.L., Murphy, M.G. & Fletcher, K.E. The “Difficult” Inpatient, a Qualitative Study of Physician Perspectives. J GEN INTERN MED (2024). https://doi.org/10.1007/s11606-024-08802-x

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Introduction: Case Studies in the Ethics of Mental Health Research

Joseph millum.

Clinical Center Department of Bioethics/Fogarty International Center, National Institutes of Health, Bethesda, MD

This collection presents six case studies on the ethics of mental health research, written by scientific researchers and ethicists from around the world. We publish them here as a resource for teachers of research ethics and as a contribution to several ongoing ethical debates. Each consists of a description of a research study that was proposed or carried out and an in-depth analysis of the ethics of the study.

Building Global Capacity in Mental Health Research

According to the World Health Organization (WHO), there are more than 450 million people with mental, neurological, or behavioral problems worldwide ( WHO, 2005a ). Mental health problems are estimated to account for 13% of the global burden of disease, principally from unipolar and bipolar depression, alcohol and substance-use disorders, schizophrenia, and dementia. Nevertheless, in many countries, mental health is accorded a low priority; for example, a 2005 WHO analysis found that nearly a third of low-income countries who reported a mental health budget spent less than 1% of their total health budget on mental health ( WHO, 2005b ).

Despite the high burden of disease and some partially effective treatments that can be implemented in countries with weaker healthcare delivery systems ( Hyman et al., 2006 ), there exist substantial gaps in our knowledge of how to treat most mental health conditions. A 2007 Lancet Series entitled Global Mental Health claimed that the “rudimentary level of mental health-service research programmes in many nations also contributes to poor delivery of mental health care” ( Jacob et al., 2007 ). Its recommendations for mental health research priorities included research into the effects of interactions between mental health and other health conditions ( Prince et al., 2007 ), interventions for childhood developmental disabilities ( Patel et al., 2007 ), cost-effectiveness analysis, the scaling up of effective interventions, and the development of interventions that can be delivered by nonspecialist health workers ( Lancet Global Mental Health Group, 2007 ). All of these priorities require research in environments where the prevailing health problems and healthcare services match those of the populations the research will benefit, which suggests that research must take place all around the world. Similarly, many of the priorities identified by the Grand Challenges in Mental Health Initiative require focus on local environments, cultural factors, and the health systems of low- and middle-income countries. All the challenges “emphasize the need for global cooperation in the conduct of research” ( Collins et al., 2011 ).

Notwithstanding the need for research that is sensitive to different social and economic contexts, the trend of outsourcing to medical research to developing countries shows no sign of abating ( Thiers et al., 2008 ). Consequently, a substantial amount of mental health research will, in any case, take place in low- and middle-income countries, as well as rich countries, during the next few years.

The need for local research and the continuing increase in the international outsourcing of research imply that there is a pressing need to build the capacity to conduct good quality mental health research around the world. However, the expansion of worldwide capacity to conduct mental health research requires more than simply addressing low levels of funding for researchers and the imbalance between the resources available in rich and poor countries. People with mental health disorders are often thought to be particularly vulnerable subjects. This may be a product of problems related to their condition, such as where the condition reduces the capacity to make autonomous decisions. It may also result from social conditions because people with mental disorders are disproportionately likely to be poor, are frequently stigmatized as a result of their condition, and may be victims of human rights abuses ( Weiss et al., 2001 ; WHO, 2005a ). As a result, it is vitally important that the institutional resources and expertise are in place for ensuring that this research is carried out ethically.

Discussion at a special session at the 7th Global Forum on Bioethics in Research revealed the perception that many mental health researchers are not very interested in ethics and showed up a lack of ethics resources directly related to their work. This collection of case studies in the ethics of mental health research responds to that gap.

This collection comprises six case studies written by contributors from around the world ( Table 1 ). Each describes a mental health research study that raised difficult ethical issues, provides background and analysis of those issues, and draws conclusions about the ethics of the study, including whether it was ethical as it stood and how it ought to be amended otherwise. Three of the case studies are written by scientists who took part in the research they analyzed. For these cases, we have asked scholars independent of the research to write short commentaries on them. It is valuable to hear how the researchers themselves grapple with the ethical issues they encounter, as well as to hear the views of people with more distance from the research enterprise. Some of the ethical issues raised here have not been discussed before in the bioethics literature; others are more common concerns that have not received much attention in the context of international research. The case studies are intended to both expand academic discussion of some of the key questions related to research into mental health and for use in teaching ethics.

Case studies are an established teaching tool. Ethical analyses of such cases demonstrate the relevance of ethics to the actual practice of medical research and provide paradigmatic illustrations of the application of ethical principles to particular research situations. Concrete cases help generate and guide discussion and assist students who have trouble dealing with ethical concepts in abstraction. Through structured discussion, ethical development and decision-making skills can be enhanced. Moreover, outside of the teaching context, case study analyses provide a means to generate and focus debate on the relevant ethical issues, which can both highlight their importance and help academic discussion to advance.

People working in mental health research can benefit most from case studies that are specific to mental health. Even though, as outlined below, many of the same ethical problems arise in mental health research as elsewhere, the details of how they arise are important. For example, the nature of depression and the variation in effectiveness of antidepressive medication make a difference to how we should assess the ethics of placebo-controlled trials for new antidepressants. Moreover, seeing how familiar ethical principles are applied to one's own research specialty makes it easier to think about the ethics of one's own research. The cases in this collection highlight the commonalities and the variation in the ethical issues facing researchers in mental health around the world.

The current literature contains some other collections of ethics case studies that may be useful to mental health researchers. I note four important collections here, to which interested scholars may want to refer. Lavery et al.'s (2007) Ethical Issues in International Bio-medical Research provides in-depth analyses of ethically problematic research, mostly in low- and middle-income countries, although none of these cases involve mental health. Cash et al.'s (2009) Casebook on Ethical Issues in International Health Research also focuses on research in low- and middle-income countries, and several of the 64 short case descriptions focus on populations with mental health problems. Two further collections focus on mental health research, in particular. Dubois (2007) and colleagues developed short and longer US-based case studies for teaching as part of their “Ethics in Mental Health Research” training course. Finally, Hoagwood et al.'s (1996) book Ethical Issues in Mental Health Research with Children and Adolescents contains a casebook of 61 short case descriptions, including a few from outside the United States and Western Europe. For teachers and academics in search of more case studies, these existing collections should be very useful. Here, we expand on the available resources with six case studies from around the world with extended ethical analyses.

The remainder of this introduction provides an overview of some of the most important ethical issues that arise in mental health research and describes some of the more significant ethics guidance documents that apply.

Ethical Issues in Mental Health Research

The same principles can be applied in assessing the ethics of mental health research as to other research using human participants ( Emanuel et al., 2000 ). Concerns about the social value of research, risks, informed consent, and the fair treatment of participants all still apply. This means that we can learn from the work done in other areas of human subjects research. However, specific research contexts make a difference to how the more general ethical principles should be applied to them. Different medical conditions may require distinctive research designs, different patient populations may need special protections, and different locations may require researchers to respond to study populations who are very poor and lack access to health care or to significant variations in regulatory systems. The ethical analysis of international mental health research therefore needs to be tailored to its particularities.

Each case study in this collection focuses on the particular ethical issues that are relevant to the research it analyzes. Nevertheless, some issues arise in multiple cases. For example, questions about informed consent arise in the context of research with stroke patients, with students, and with other vulnerable groups. To help the reader compare the treatment of an ethical issue across the different case studies, the ethical analyses use the same nine headings to delineate the issues they consider. These are social value, study design, study population, informed consent, risks and benefits, confidentiality, post-trial obligations, legal versus ethical obligations, and oversight.

Here, I focus on five of these ethical issues as they arise in the context of international mental health research: (1) study design, (2) study population, (3) risks and benefits, (4) informed consent, and (5) post-trial obligations. I close by mentioning some of the most important guidelines that pertain to mental health research.

Study Design

The scientific design of a research study determines what sort of data it can generate. For example, the decision about what to give participants in each arm of a controlled trial determines what interventions the trial compares and what questions about relative safety and efficacy it can answer. What data a study generates makes a difference to the ethics of the study because research that puts human beings at risk is ethically justified in terms of the social value of the knowledge it produces. It is widely believed that human subject research without any social value is unethical and that the greater the research risks to participants, the greater the social value of the research must be to compensate ( Council for International Organizations of Medical Sciences [CIOMS], 2002 ; World Medical Association, 2008 ). However, changing the scientific design of a study frequently changes what happens to research participants, too. For example, giving a control group in a treatment trial an existing effective treatment rather than placebo makes it more likely that their condition will improve but may expose them to adverse effects they would not otherwise experience. Therefore, questions of scientific design can be ethically very complex because different possible designs are compared both in terms of the useful knowledge they may generate and their potential impact on participants.

One of the more controversial questions of scientific design concerns the standard of care that is offered to participants in controlled trials. Some commentators argue that research that tests therapeutic interventions is only permissible if there is equipoise concerning the relative merits of the treatments being compared, that is, there are not good reasons to think that participants in any arm of the trial are receiving inferior treatment ( Joffe and Truog, 2008 ). If there is not equipoise, the argument goes, then physician-researchers will be breaching their duty to give their patients the best possible care ( Freedman, 1987 ).

The Bucharest Early Intervention Project (BEIP) described in the case study by Charles Zeanah was a randomized controlled trial comparing foster care with institutional care in Bucharest, Romania. When designing the BEIP, the researchers wrestled with the issue of whether there was genuine equipoise regarding the relative merits of institutional and foster care. One interpretation of equipoise is that it exists when the professional community has not reached consensus about the better treatment ( Freedman, 1987 ). Childcare professionals in the United States were confident that foster care was superior, but there was no such confidence in Romania, where institutional care was the norm. Which, then, was the relevant professional community?

The equipoise requirement is justified by reference to the role morality of physicians: for a physician to give her patient treatment that she knows to be inferior would violate principles of therapeutic beneficence and nonmaleficence. As a result, the equipoise requirement has been criticized for conflating the ethics of the physician-patient relationship with the ethics of the researcher-participant relationship ( Miller and Brody, 2003 ). According to Miller and Brody (2003) , provided that other ethical requirements are met, including an honest null hypothesis, it is not unethical to assign participants to receive treatment regimens known to be inferior to the existing standard of care.

A subset of trial designs that violate equipoise are placebo-controlled trials of experimental treatments for conditions for which proven effective treatments already exist. Here, there is not equipoise because some participants will be assigned to placebo treatment, and ex hypothesi there already exists treatment that is superior to placebo. Even if we accept Miller and Brody's (2003) argument and reject the equipoise requirement, there remain concerns about these placebo-controlled trials. Providing participants with less effective treatment than they could get outside of the trial constitutes a research risk because trial participation makes them worse off. Moreover, on the face of it, a placebo-controlled trial of a novel treatment of a condition will not answer the most important scientific question about the treatment that clinicians are interested in: is this new treatment better than the old one? Consequently, in situations where there already exists a standard treatment of a condition, it has generally been considered unethical to use a placebo control when testing a new treatment, rather than using the standard treatment as an active-control ( World Medical Association, 2008 ).

Some psychiatric research provides scientific reasons to question a blanket prohibition on placebo-controlled trials when an effective intervention exists. For example, it is not unusual for antidepressive drugs to fail to show superiority to placebo in any given trial. This means that active-control trials may seem to show that an experimental drug is equivalent in effectiveness to the current standard treatment, when the explanation for their equivalence may, in fact, be that neither was better than placebo. Increasing the power of an active-control trial sufficiently to rule out this possibility may require an impractically large number of subjects and will, in any case, put a greater number of subjects at risk ( Carpenter et al., 2003 ; Miller, 2000 ). A 2005 trial of risperidone for acute mania conducted in India ( Khanna et al., 2005 ) was criticized for unnecessarily exposing subjects to risk ( Basil et al., 2006 ; Murtagh and Murphy, 2006 ; Srinivasan et al., 2006 ). The investigators' response to criticisms adopted exactly the line of argument just described:

A placebo group was included because patients with mania generally show a high and variable placebo response, making it difficult to identify their responses to an active medication. Placebo-controlled trials are valuable in that they expose the fewest patients to potentially ineffective treatments. In addition, inclusion of a placebo arm allows a valid evaluation of adverse events attributable to treatment v. those independent of treatment. ( Khanna et al., 2006 )

Concerns about the standard of care given to research participants are exacerbated in trials in developing countries, like India, where research participants may not have access to treatment independent of the study. In such cases, potential participants may have no real choice but to join a placebo-controlled trial, for example, because that is the only way they have a chance to receive treatment. In the Indian risperidone trial, the issue of exploitation is particularly stark because it seemed to some that participants were getting less than the international best standard of care, in order that a pharmaceutical company could gather data that was unlikely to benefit many Indian patients.

This is just one way in which trial design may present ethically troubling risks to participants. Other potentially difficult designs include washout studies, in which participants discontinue use of their medication, and challenge studies, in which psychiatric symptoms are experimentally induced ( Miller and Rosenstein, 1997 ). In both cases, the welfare of participants may seem to be endangered ( Zipursky, 1999 ). A variant on the standard placebo-controlled trial design is the withdrawal design, in which everyone starts the trial on medication, the people who respond to the medication are then selected for randomization, and then half of those people are randomized to placebo. This design was used by a Japanese research team to assess the effectiveness of sertraline for depression, as described by Shimon Tashiro and colleagues in this collection. The researchers regarded this design as more likely to benefit the participants because for legal reasons, sertraline was being tested in Japan despite its proven effectiveness in non-Japanese populations. Tashiro and colleagues analyze how the risks and benefits of a withdrawal design compare with those of standard placebo-controlled trials and consider whether the special regulatory context of Japan makes a difference.

Study Population

The choice of study population implicates considerations of justice. The Belmont Report, which lays out the ethical foundations for the United States system for ethical review of human subject research, says:

Individual justice in the selection of subjects would require that researchers … should not offer potentially beneficial research only to some patients who are in their favor or select only “undesirable” persons for risky research. Social justice requires that distinction be drawn between classes of subjects that ought, and ought not, to participate in any particular kind of research, based on the ability of members of that class to bear burdens and on the appropriateness of placing further burdens on already burdened persons. ( National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, 1978 )

Two distinct considerations are highlighted here. The first (“individual justice”) requires that the researchers treat people equally. Morally irrelevant differences between people should not be the basis for deciding whom to enroll in research. For example, it would normally be unjust to exclude women from a phase 3 trial of a novel treatment of early-stage Alzheimer disease, given that they are an affected group. Some differences are not morally irrelevant, however. In particular, there may be scientific reasons for choosing one possible research population over another, and there may be risk-related reasons for excluding certain groups. For example, a functional magnetic resonance imaging study in healthy volunteers to examine the acute effects of an antianxiety medication might reasonably exclude left-handed people because their brain structure is different from that of right-handed people, and a study of mood that required participants to forego medication could justifiably exclude people with severe depression or suicidal ideation.

The second consideration requires that we consider how the research is likely to impact “social justice.” Social justice refers to the way in which social institutions distribute goods, like property, education, and health care. This may apply to justice within a state ( Rawls, 1971 ) or to global justice ( Beitz, 1973 ). In general, research will negatively affect social justice when it increases inequality, for example, by making people who are already badly off even worse off. The quotation from the Belmont Report above suggests one way in which research might violate a requirement of social justice: people who are already badly off might be asked to participate in research and so be made worse off. For example, a study examining changes in the brain caused by alcohol abuse that primarily enrolled homeless alcoholics from a shelter near the study clinic might only put at further risk this group who are already very badly off. An alternative way in which research can promote justice or injustice is through its results. Research that leads to the development of expensive new attention deficit hyperactivity disorder medication is likely to do little, if anything, to make the world more just. Research on how to improve the cognitive development of orphaned children in poor environments (like the BEIP) is much more likely to improve social justice.

This last point suggests a further concern about fairness—exploitation—that frequently arises in the context of international collaborative research in developing countries. Exploitation occurs, roughly, when one party takes “unfair advantage” of the vulnerability of another. This means that the first party benefits from the interaction and does so to an unfair extent ( Wertheimer, 1996 ). These conditions may be met in international collaborative research when the burdens of research fall disproportionately on people and institutions in developing countries, but the benefits of research, such as access to new treatments, accrue to people in richer countries. A number of case studies in this collection raise this concern in one way or another. For example, Virginia Rodriguez analyzes a proposed study of the genetic basis of antisocial personality disorder run by US researchers but carried out at sites in several Latin American countries. One of the central objections raised by one of the local national research ethics committees with regard to this study was that there appeared to be few, if any, benefits for patients and researchers in the host country.

Risks and Benefits

Almost all research poses some risk of harm to participants. Participants in mental health research may be particularly susceptible to risk in several ways. First, and most obviously, they may be physically or psychologically harmed as a result of trial participation. For example, an intervention study of an experimental antipsychotic may result in some serious adverse effects for participants who take the drug. Less obvious but still very important are the potential effects of stopping medication. As mentioned above, some trials of psychoactive medications require that patients stop taking the medications that they were on before the trial ( e.g ., the Japanese withdrawal trial). Stopping their medication can lead to relapse, to dangerous behavior (like attempted suicide), and could mean that their previous treatment regimen is less successful when they attempt to return to it. Participants who were successfully treated during a trial may have similar effects if they do not have access to treatment outside of the trial. This is much more likely to happen in research conducted with poor populations, such as the Indian mania patients.

The harms resulting directly from research-related interventions are not the only risk to participants in mental health research. Participation can also increase the risks of psychosocial harms, such as being identified by one's family or community as having a particular condition. Such breaches of confidentiality need not involve gross negligence on the part of researchers. The mere fact that someone regularly attends a clinic or sees a psychiatrist could be sufficient to suggest that they have a mental illness. In other research, the design makes confidentiality hard to maintain. For example, the genetic research described by Rodriguez involved soliciting the enrollment of the family members of people with antisocial personality disorder.

The harm from a breach of confidentiality is exacerbated when the condition studied or the study population is stigmatized. Both of these were true in the case Sana Loue describes in this collection. She studied the co-occurrence of severe mental illnesses and human immunodeficiency virus risk in African-American men who have sex with men. Not only was there shame attached to the conditions under study, such that they were euphemistically described in the advertisements for the research, but also many of the participants were men who had heterosexual public identities.

Informed Consent

Many people with mental disorders retain the capacity (ability) and competence (legal status) to give informed consent. Conversely, potential participants without mental problems may lack or lose capacity (and competence). Nevertheless, problems with the ability to consent remain particularly pressing with regard to mental health research. This is partly a consequence of psychological conditions that reduce or remove the ability to give informed consent. To study these conditions, it may be necessary to use participants who have them, which means that alternative participants who can consent are, in principle, not available. This occurred in the study of South African stroke patients described by Anne Pope in this collection. The researcher she describes wanted to compare the effectiveness of exercises designed to help patients whose ability to communicate was compromised by their stroke. Given their communication difficulties and the underlying condition, there would inevitably be questions about their capacity. Whether it is permissible to enroll people who cannot give informed consent into a study depends on several factors, including the availability of alternative study populations, the levels of risk involved, and the possible benefits to participants in comparison with alternative health care they could receive.

In research that expects to enroll people with questionable capacity to consent, it is wise to institute procedures for assessing the capacity of prospective participants. There are two general strategies for making these assessments. The first is to conduct tests that measure the general cognitive abilities of the person being assessed, as an IQ test does. If she has the ability to perform these sorts of mental operations sufficiently well, it is assumed that she also has the ability to make autonomous decisions about research participation. A Mini-Mental State Examination might be used to make this sort of assessment ( Kim and Caine, 2002 ). The second capacity assessment strategy focuses on a prospective participant's understanding and reasoning with regard to the specific research project they are deciding about. If she understands that project and what it implies for her and is capable of articulating her reasoning about it, then it is clear that she is capable of consenting to participation, independent of her more general capacities. This sort of assessment requires questions that are tailored to each specific research project and cannot be properly carried out unless the assessor is familiar with that research.

Where someone lacks the capacity to give consent, sometimes a proxy decision maker can agree to trial participation on her behalf. In general, proxy consent is not equivalent to individual consent: unless the proxy was expressly designated to make research decisions by the patient while capacitated, the proxy lacks the power to exercise the patient's rights. As a result, the enrollment of people who lack capacity is only acceptable when the research poses a low net risk to participants or holds out the prospect of benefiting them. When someone has not designated a proxy decision maker for research, it is common to allow the person who has the power to make decisions about her medical care also to make decisions about research participation. However, because medical care is directed at the benefit of the patient, but research generally is not aimed at the benefit of participants, the basis for this assumption is unclear. Its legal basis may be weak, too. For example, in her discussion of research on South African stroke patients, Pope notes the confusion surrounding the legality of surrogate decision makers, given that the South African constitution forbids proxy decision making for adults (unless they have court-appointed curators), but local and international guidance documents seem to assume it.

Although it is natural to think of the capacity to give consent as an all-or-nothing phenomenon, it may be better conceptualized as domain-specific. Someone may be able to make decisions about some areas of her life, but not others. This fits with assumptions that many people make in everyday life. For example, a 10-year-old child may be deemed capable of deciding what clothes she will wear but may not be capable of deciding whether to visit the dentist. The capacity to consent may admit of degrees in another way, too. Someone may have diminished capacity to consent but still be able to make decisions about their lives if given the appropriate assistance. For example, a patient with mild dementia might not be capable of deciding on his own whether he should move in with a caregiver, but his memory lapses during decision making could be compensated for by having his son present to remind him of details relevant to the decision. The concept of supported decision making has been much discussed in the literature on disability; however, its application to consent to research has received little attention ( Herr, 2003 ; United Nations, 2007 ).

The ability to give valid informed consent is the aspect of autonomy that is most frequently discussed in the context of mental health research, but it is not the only important aspect. Several of the case studies in this collection also raise issues of voluntariness and coercion. For example, Douglas Wassenaar and Nicole Mamotte describe a study in which professors enrolled their students, which raises the question of the vulnerability of student subjects to pressure. Here, there is both the possibility of explicit coercion and the possibility that students will feel pressure even from well-meaning researchers. For various reasons, including dependence on caregivers or healthcare professionals and the stigma of their conditions, people with mental illnesses can be particularly vulnerable to coercion.

Post-Trial Obligations

The obligations of health researchers extend past the end of their study. Participants'data remain in the hands of researchers after their active involvement in a study is over, and patients with chronic conditions who enroll in clinical trials may leave them still in need of treatment.

Ongoing confidentiality is particularly important when studying stigmatized populations (such as men who have sex with men as discussed by Sana Loue) or people with stigmatizing conditions (such as bipolar disorder). In research on mental illnesses, as with many medical conditions, it is now commonplace for researchers to collect biological specimens and phenotypic data from participants to use in future research (such as genome-wide association studies). Additional challenges with regard to confidentiality are raised by the collection of data and biological specimens for future research because confidentiality must then be guaranteed in a long period of time and frequently with different research groups making use of the samples.

Biobanking also generates some distinctive ethical problems of its own. One concerns how consent to the future use of biological specimens should be obtained. Can participants simply give away their samples for use in whatever future research may be proposed, or do they need to have some idea of what this research might involve in order to give valid consent? A second problem, which arises particularly in transnational research, concerns who should control the ongoing use of the biobank. Many researchers think that biological samples should not leave the country in which they were collected, and developing country researchers worry that they will not be allowed to do research on the biobanks that end up in developed countries. This was another key concern with the proposed study in Latin America.

In international collaborative research, further questions arise as a result of the disparities between developing country participants and researchers and developed country sponsors and researchers. For example, when clinical trials test novel therapies, should successful therapies be made available after the trial? If they should, who is responsible for ensuring their provision, to whom should they be provided, and in what does providing them consist? In the case of chronic mental illnesses like depression or bipolar disorder, patient-participants may need maintenance treatment for the rest of their lives and may be at risk if treatment is stopped. This suggests that the question of what happens to them after the trial must at least be considered by those who sponsor and conduct the trial and the regulatory bodies that oversee it. Exactly on whom obligations fall remains a matter of debate ( Millum, 2011 ).

Ethics Guidelines

A number of important policy documents are relevant to the ethics of research into mental disorders. The WMA's Declaration of Helsinki and the CIOMS' Ethical Guidelines for Biomedical Research both consider research on individuals whose capacity and/or competence to consent is impaired. They agree on three conditions: a) research on these people is justified only if it cannot be carried out on individuals who can give adequate informed consent, b) consent to such research should be obtained from a proxy representative, and c) the goal of such research should be the promotion of the health of the population that the research participants represent ( Council for International Organizations of Medical Sciences, 2002 ; World Medical Association, 2008 ). In addition, with regard to individuals who are incapable of giving consent, Guideline 9 of CIOMS states that interventions that do not “hold out the prospect of direct benefit for the individual subject” should generally involve no more risk than their “routine medical or psychological examination.”

In 1998, the US National Bioethics Advisory Commission (NBAC) published a report entitled Research Involving Persons with Mental Disorders That May Affect Decision-making Capacity ( National Bioethics Advisory Commission, 1998 ). As the title suggests, this report concentrates on issues related to the capacity or competence of research participants to give informed consent. Its recommendations are largely consistent with those made in the Declaration of Helsinki and CIOMS, although it is able to devote much more space to detailed policy questions (at least in the United States context). Two domains of more specific guidance are of particular interest. First, the NBAC report considers the conditions under which individuals who lack the capacity to consent may be enrolled in research posing different levels of risk and supplying different levels of expected benefits to participants. Second, it provides some analysis of who should be recognized as an appropriate proxy decision maker (or “legally authorized representative”) for participation in clinical trials.

Finally, the World Psychiatric Association's Madrid Declaration gives guidelines on the ethics of psychiatric practice. This declaration may have implications for what is permissible in psychiatric research, insofar as the duties of psychiatrists as personal physicians are also duties of psychiatrists as medical researchers. It also briefly considers the ethics of psychiatric research, although it notes only the special vulnerability of psychiatric patients as a concern distinctive of mental health research ( World Psychiatric Association, 2002 ).

The opinions expressed are the author's own. They do not reflect any position or policy of the National Institutes of Health, U.S. Public Health Service, or Department of Health and Human Services.

Disclosure : The author declares no conflict of interest.

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The Mental Health Crisis Within the Mental Health Crisis

Drew Altman Published: May 22, 2024

I was able to make some changes while in office, including improving staffing and closing an ancient and dangerous psychiatric facility for youth built in the late 1800s, but it was far from enough to satisfy me or those families. The legislature wasn’t much interested unless a patient escape made the front pages. Despite the tireless work of advocates and a few champions in the legislature, when it came time to allocate resources in the state budget, the chronically mentally ill wasn’t a funding priority. It was one of a few longstanding problems I likely could not fundamentally affect in a term in office in a large umbrella agency with seven other demanding divisions, including Medicaid and welfare. In government, you pick your shots. For me, then, the priorities were welfare reform, Medicaid managed care, school-based social services, homelessness, and of course inevitably, the crisis of the day or week.

That night, resigned to my limitations, I asked the press and staff to leave the room and met privately with the families. Near the end of the meeting, I gave them my personal phone number, feeling that if I could not make systemic changes, I had the authority to at least help individual cases. I heard from many of them, sometimes in the middle of the night when something went terribly wrong. I learned their stories. Sometimes we found a way to help individual cases, but even with control of a third of the state budget and workforce in the department, there was often little that could be done.

Decades later at KFF, we did a survey with CNN on mental health in America in 2022. Scrolling through our findings, headlines jumped off the page. Ninety percent of the public believed there was a crisis in mental health in America. Big numbers of people reported real problems accessing and paying for mental health services. Then they were there—the families. Somewhat buried in the survey was the story in data I had learned all those years ago in New Jersey: the mental health crisis isn’t just about patients with mental illness or the teens struggling with emotional problems or individuals coping with loneliness, it’s also deeply and centrally about families.

Any family with a family member experiencing mental illness knows all too well the serious stresses and strains that are part of the experience. But there was something else in the data that was even more striking: the number of families dealing with true crisis level events—a family member living on the street; making the brutal decision to institutionalize a loved one who is a threat to themselves or others; rushing a spouse or child to an ER with a drug overdose; self-harm; suicide attempts. And while we have inadequate services for families dealing with mental illness generally, we have even fewer services and supports for the families dealing with crisis events. The numbers of families experiencing a very serious mental health-related event is so large that it may constitute a crisis within the larger mental health crisis, and it’s one that does not receive enough attention.

Our Mental Health in America survey showed that these crisis events are pervasive and include many of the worst things that can happen in a family:

• Twenty-eight percent of all Americans say that their family had to take a painful step, like institutionalizing a family member because they were a threat to themselves or others.
• Twenty-one percent said they or a family member had a drug overdose requiring an ER visit.
• Fourteen percent said they or a family member ran away from home and lived on the streets due to mental health issues.
• Sixteen percent said a family member experienced homelessness because of a mental health problem.
• Eight percent said they or a family member had a severe eating disorder requiring hospitalization or in-person treatment.
• Twenty-six percent said they or a family member engaged in cutting or self-harm behaviors.
• And 16% had a family member who died from suicide.

When we looked at the overlap between the problems, half of American families (51%) experienced one or more of these severe crises. Let that sink in: half of all American families had a severe mental health-related crisis. It means that when you measure the impact of the mental health crisis, you really need to multiply manifold, something official statistics don’t do. These are the kinds of crises that truly challenge families. Parents and siblings struggle to deal with them and may never be the same after they occur. Often families make huge sacrifices to assist family members in crisis.

The survey data show some of the consequences. Over four in ten say the crisis had a major impact on their own mental health or their family’s relationships. One in five say it had a major impact on the family’s financial situation. This group, which has the most direct experience with mental health care in this country, are more likely to believe that mental health issues in both children and adults are at a crisis level in the U.S., and that most people are not able to get the mental health services they need.

Not surprisingly, every bad outcome is complicated by poverty, and family crises like these are more likely to occur in lower income households. Fifty-seven percent of people living in households earning less than $40,000 a year experienced these crises compared with 43% of those in families earning more than $90,000.

Some adults know or can figure out who to call if a family member needs help with a serious mental health-related problem, such as a drug problem or a potential suicide. Local and national crisis hotlines are sometimes available for different problems. But how many know who to call for a family fraying and in crisis? How many would be afraid to call for fear of alerting law enforcement or child protective services to some problems? Sometimes, of course, dysfunction or something worse in a family contributes to a family member’s problem or even is the problem, further complicating solutions.

NAMI , the national organization representing families with mental illness, does valiant work through its chapters providing support and advocacy, but it can only do so much and cannot manufacture services that do not exist for a family dealing with a crisis.

Ultimately, the best thing we can do for families experiencing a mental health related crisis is to more effectively address the underlying problem affecting their family member. In my next column, I will review the problems Americans have accessing mental health services.

There wasn’t a great deal I could do on the spot for those families at the psychiatric hospital in New Jersey back then. But the data are a reminder of how the mental health crisis in America affects families as well as individuals, magnifying its impact, expanding the policies and services needed to address it, and changing the way we need to think about the problem.

View all of Drew’s Beyond the Data columns.

Also of Interest

• Beyond the Data
• KFF/CNN Mental Health In America Survey
• A Look at Substance Use and Mental Health Treatment Facilities Across the U.S.
• Taking a Look at 988 Suicide & Crisis Lifeline Implementation One Year After Launch