Patient Participation in Mental Health Care – Perspectives of Healthcare Professionals and Patients: A Scoping Review

Figures & data

Table 1. The stages of the framework.

Stage 1: Identifying the research question

Stage 2: Identifying relevant studies

Stage 3: Study selection

Stage 4: Charting the data

Stage 5: Collating, summarizing, and reporting the results

Table 2. Flowchart.

Table 3. Selected articles.

Author(s), year of publication, and study location	Title	Study populations	Aims of the study	Methodology	Perspectives from service users and health professionals	Important results
Bee, P., Brooks, H., Fraser, C., Lovell, K. International Journal of Nursing Manchester. UK 2015	Professional perspectives on service user and carer involvement in mental health care planning: A qualitative study.	Mental health professionals, 23 participants on trust and university	To explore contemporary mental health professionals’ perceptions and experiences of delivering mental health care planning and involving service users and carers in decisions about their care.	Focus groups and individual interviews	Health professionals	The study revealed broad support among mental health professionals for involving service users and carers in care planning. However, practical implementation faced challenges due to entrenched organizational cultures, time constraints, and varying user insight levels. The findings emphasized the urgent need for organizational change and comprehensive staff training to enable effective user involvement. Overcoming these barriers is essential to realizing the benefits of collaborative, person-centered mental health care.
Eliacin, J. Salyers, M. P. Kukla, M. Matthias, M. S. Journal of Mental Health. USA. 2015	Factors influencing patients’ preferences and perceived involvement in shared decision-making in mental health care.	Seventy-nine patients agreed to participated	To better understand patient-level factors that may influence participation in SDM, we examined patients’ perceptions of treatment decision-making with mental health providers.	Interviews and inductive thematic approach	Service users	The patient-provider relationship in mental health care is long-term and dynamic, impacting communication and Shared Decision Making (SDM). Cross-sectional studies struggle to capture these dynamics, hindering our understanding of SDM over time. Trust in providers may lead patients to defer treatment decisions without necessarily hindering SDM. Patients and providers adapt communication processes to situational needs.
Grundy, A. C., Bee, P., Meade, O., Callaghan, P., Beatty, S., Olleveant, N., Lovell, K. Journal of Psychiatric and Mental Health Nursing Nottingham UK 2016	Bringing meaning to user involvement in mental health care planning: A qualitative exploration of service user perspectives.	27 user participants on Trust and University	1. Conceptualize care planning involvement from the user perspective 2. Examine how meaningful involvement can be instilled in the care planning process 3. Explore the role and influence of individuals, teams and organizational factors in achieving high quality user-involved care planning.	Focus groups and individual interviews	Service user or/and health professional perspective	The study highlighted user perspectives on care planning, distinguishing between the tangible document and the operational process. Users emphasized a model of user-involved care planning, encapsulated in the framework, focusing on procedural and agent-centered elements. Procedural aspects included emotional connection, user contribution, currency, consolidation, and consequence, while agent-centered elements encompassed user capacity, confidence, professional consultation, choice, and clarity of expression. The findings underscore the importance of aligning care planning with user preferences to foster collaborative, person-centered mental health care.
Jones Amanda, Jessa Kari Schön Ulla-Karin International journal of qualitative studies on health and well-being Stockholm, Sverige 2021	How do users with comorbidity perceive participation in social services? A qualitative interview study	Twelve individuals consented to participate, comprising nine men and three women, ranging in age from twenty-two to sixty-five years. Participants presented with a range of mental health conditions, such as depression, anxiety, post-traumatic stress disorder (PTSD), or bipolar disorder.	This study seeks to explore how users perceive participation in social work encounters through a grounded theory approach.	A constructivist grounded theory (CGT) approach (Charmaz, 2014) was used to explore users’ subjective experiences and create a theoretical framework on what user participation entails and the underlying processes of participation interviews	Service users	The study illustrates how people with comorbidity are carriers of a valuable experience-based knowledge that can be considered indispensable in an evidence-based practice. The ability to participate and impart this knowledge can fluctuate due to periods of mental illness or ongoing addiction. The constructed model shows that mutual respect for each other’s knowledge and willingness for user participation of both users and social workers are important keys to such practice.
Jørgensen Kim,Hansen Mathias, Hansen Morten Karlsson Bengt. International Journal of Mental Health Nursing. Denmark 2024	Health professionals’ perceptions of user involvement in a mental health center: A critical discourse analysis	24 informants agreed to participate. Among the healthcare professionals, seven assisted with treatment in an inpatient mental health center and seven were employed in a mental health outpatient unit	To investigate the manner in which health professionals express user involvement in interactions between healthcare professionals and users of mental health care at the individual level within a mental health hospital.	This study adopts a social constructivist approach to understand user involvement, recognizing it as a relative concept shaped by social interactions. Through critical discourse analysis, the study aims to explore the linguistic and discursive aspects of social and cultural phenomena, as well as the dynamics of change in late modernity. Focus group interviews	Nurses and other health professionals at a mental health hospital	The text discusses three key discourses on user involvement in mental health care: paternalistic practices, medical discourse, and structural treatment approaches. It highlights challenges like power imbalances and linguistic barriers, stressing the need for a patient-centered approach that prioritizes user autonomy and meaningful participation. By addressing these discourses, healthcare professionals can enhance care quality and outcomes, promoting a more equitable and user-centered approach in mental health care.
Jørgensen Kim, Hansen Mathias Groth Andersen Trine, Hansen Morten Karlsson Bengt. International Journal of Environmental Research and Public Health Denmark 2023	Healthcare Professionals’ Experiences with Patient Participation in a Mental Healthcare Center: A Qualitative Study	Twenty-four participants health professionals, Nurses, assistant nurses, physiotherapists, occupational therapists, social workers, and a teacher who had first-hand contact with the patient participated	This study explores the experiences of healthcare professionals with patient participation in a mental health center context.	Four focus group interviews to create a dynamic and inspiring dialogue on the experiences of health professionals with patient participation in a mental health center context.	Health professionals	There is an expectation that the patient is active throughout their treatment course and decisions. On the other hand, patient participation can be reduced synonymously because the patient is well-informed. There is an ambivalent approach to structural, standardized, evidence-based treatment options such as cognitive behavioral therapy, environmental therapy, and psychoeducation. The entire medical treatment is an offer that involves the patient’s perspectives. It is also recognized that structurally predetermined treatment measures also limit the possibility of taking into consideration all the individual patient’s needs for participation.
Jørgensen Kim, Praestegaard Jeanette. Nursing Inquiry Denmark 2017	Patient participation as discursive practice—A critical discourse analysis of Danish mental healthcare	Ten psychiatric nurses and Eight policy documents	This study explores how discourses of patient participation unfold and are at play in the articulations in official legal and political documents and patient records relating to a Danish psychiatric context.	We’ve examined policy documents, patient records, and conducted semi-structured interviews utilizing a critical discourse approach inspired by Fairclough. This approach focuses on understanding how power dynamics manifest through language usage.	Psychiatric nurses	The research findings show that patient participation within Danish psychiatric healthcare is governed within a neoliberal discourse where underlying discourses; discourse of biomedicine, paternalism, management, evidence and ethics of care are embedded, and a discourse that seems to ascribe stigmatizing traits to mentally ill patients.
Kortteisto Tiina Laitila Minna | Pitkänen Anneli. Perspect Psychiatr Care. Finland 2021	Professionals’ views on patient involvement in acute psychiatric wards: A qualitative study	Seventeen mental health professionals (four physicians, two psychologists, four social workers, six registered nurses, one practical mental health nurse), comprising five men and twelve women, with an average age of forty-three years. Their experience in psychiatric settings ranged from one to thirty-three years (average fifteen years), and on acute psychiatric wards from one to twenty-five years (average eleven years).	The aim was to find five or six professionals willing to share their information related to patient involvement in focus group interviews in each hospital district.	Face‐to‐face focus group interviews	Health professionals	The findings confirm that many obstacles need to be removed in ward practice before patient involvement can really be made a part of the daily routine.
Laitila, M., Nummelin, J., Kortteisto, T., Pitkänen, A. Archives of Psychiatric Nursing Finland 2018	Service users’ views regarding user involvement in mental health services: A qualitative study.	Participants totaled 21, of whom 13 were female and eight were male. Of the participants six were inpatients, of whom three were female and three were male. The focus group in the first organization included seven service users, five female and two male. The focus group of the other organization consisted of eight participants, five female and three male.	To explore the views of service users on user involvement in mental health service.	Three focus group interviews and analyzed with qualitative content analysis.	Service users’	The study revealed practical insights from service users regarding their involvement in care. They stressed the importance of being well-informed and actively participating in decisions about their treatment. Improving care planning and coordination emerged as key strategies to enhance user involvement. These findings carry implications for mental health services at both individual and systemic levels.
Matthias, M. S. Salyers, M. P. Rollins, A. L. Frankel, R. M. USA. Psychiatric Rehabilitation Journal 2012	Decision making in recovery-oriented mental health care	Four providers (3 psychiatrists, 1 nurse practitioner) and 40 consumers with severe mental illness (10 consumers per provider) were recruited from a community mental health center with a recovery-oriented focus	This study explores how consumers and providers make decisions in medication management consultations.	We directly observed forty medication management appointments.	Health professionals and service users	The study finds that while person-centeredness is prevalent in mental health treatment, shared decision-making (SDM) remains uncommon. The authors propose interventions, like peer instruction, to empower consumers to play a more active role in their treatment. They emphasize the significance of promoting collaborative decision-making between service providers and consumers to improve mental health treatment outcomes.
Matscheck, D. Piuva, K. Health and Social Care in the Community Stockholm, Sweden 2022	In the center or caught in the middle? – Social workers’ and healthcare professionals’ views on user involvement in Coordinated Individual Plans in Sweden.	Twenty professionals working within social service and health-care agencies for people with mental health and/or substance abuse problems in the Stockholm region	How do the professionals experience user involvement in CIP? How do the professionals view the user/patient’s role in collaboration in care planning?	Interviews qualitative content analysis	Health professionals	Professionals in the study show mixed feelings about involving users in care planning. They balance supporting user demands with aligning them with available services and care organization. Users often feel vulnerable between caregivers’ duties and economic constraints. Professionals orchestrating meetings between users and all parties play a street-level bureaucrat role. New Public Management trends complicate this role, as noted by interviewees.
Petersen, K, Borg, T., Hounsgaard, L., Nielsen, C. V. Scandinavian Journal of Disability Research Denmark. 2012	Learning via participation – a user perspective on user involvement in mental health rehabilitation.	Twelve of 24 residents in the supported housing schemes were included in the interviews, age 22–45 years, three men and nine women, three months to three years stay at time of inclusion.	The aim of the study is to gain insight into the user’s perspective on user involvement in mental health rehabilitation.	Field study lasting 15 months in two supported housing schemes. An ethnographic approach by James Spradley was employed, involving participant observation, informal conversations, and individual- and group-interview.	Service users	In supported housing for rehabilitation, users found value in community involvement, which empowered them and enhanced learning. Interaction with professionals and peers aided in decision-making and independent living skills. Yet, during illness, conflicts arose due to limited decision-making access. Peer residents facilitated learning, but restricted external community access hindered knowledge transfer. User involvement in rehabilitation provided learning prospects alongside obstacles.
Sather Eva W., Iversen Valentina C., Svindseth Marit F., Crawford Paul, Vasset Froydis Journal of Evaluation in Clinical Practice Norway 2019	Patients’ perspectives on care pathways and informed shared decision making in the transition between psychiatric hospitalization and the community	Three focus group interviews with a total of 10 informants from five different communities were conducted	This study explores former patients’ views of pathways in transition between district psychiatric hospital centers (DPCs) and community mental health services.	Focus group interviews	Service users	Shared decision making was reported more precisely as informed shared decision-making. Shared information between all parties involved in care pathways is key.
Selvin, M. Almqvist, K., Kjellin, L., Schröder, A. International Journal of Mental Health Nursing Sweden. 2021	Patient participation in forensic psychiatric care: Mental health professionals’ perspective.	19 professionals, ten women and nine men) comprising five nursing assistants, seven nurses, two counselors, two psychologists, and three psychiatrists.	The aim of the present study was to describe mental health professionals’ perceptions of the concept of patient participation in forensic psychiatric care.	Individual interviews	Health professionals	The research underscores the significance of patient participation in maintaining the quality of care. However, it also highlights the challenges of fostering patient involvement within coercive care settings, as previously noted in literature. The findings emphasize the crucial role of healthcare practitioners in establishing conditions conducive to patient engagement through clear communication, active participation, and specialized approaches tailored to the demands of forensic psychiatric care. By laying down these essential foundations and encouraging patient autonomy within safe boundaries, professionals can bolster patient involvement and accountability, potentially facilitating the patient’s path to recovery.
Solbjør, M., Rise, M. B., Westerlund, H., & Steinsbekk, A. International Journal of Social Psychiatry. 2013	Patient participation in mental healthcare: When is it difficult? A qualitative study of users and providers in a mental health hospital in Norway.	20 users and 25 staff from a mental health hospital in central Norway	To investigate mental health service users’ and providers’ views on patient participation during episodes of mental illness.	Qualitative interview	Health professionals and service users	The study reveals how mental health service users and professionals experience patient participation, highlighting challenges when patients are perceived as lacking insight. There’s a need for clearer distinctions between treatment and participation, and a precise definition of patient involvement. Individuals with insight and cooperation should have ample opportunities for participation. Sensitivity from staff is crucial to avoid using participation solely for treatment goals. Systemic improvements are necessary, along with further research involving service users during illness phases.
Souraya, S. Hanlon, C., Asher, L. Globalization and Health. London 2018	Involvement of people with schizophrenia in decision-making in rural Ethiopia: A qualitative study	10 informants with community-based rehabilitation workers, and 18 in-depth interviews	The aim of this study was to explore the involvement of people with schizophrenia in decision-making relating to their care in rural Ethiopia	Focus group interviews	People with schizophrenia, caregivers, health officers, supervisors and a community-based rehabilitation worker.	Engaging individuals with schizophrenia can be challenging due to their lack of motivation and limited resources to participate actively. In numerous instances, healthcare professionals tend to make decisions on behalf of individuals with schizophrenia.
Susanti, H., James, K. Utomo, B. Keliat, B. A. Lovell, K., Irmansyah, I., Rose, D., Colucci, E., Brooks, H. Health Expectations. Depok, Indonesia 2020.	Exploring the potential use of patient and public involvement (PPI) to strengthen Indonesian mental health care for people with psychosis: A qualitative exploration of the views of service users and carers	Forty-three participants consented to take part in focus groups in three community organizations.	To understand service users’ and carers’ views on the current use and potential applicability of PPI within Indonesian mental health services.	Focus groups interviews	22 service users and 21 carers	The study reveals limited opportunities for meaningful Patient and Public Involvement (PPI) in Indonesian mental health services despite a general desire for it, particularly noted among participants linked to an NGO for individuals with schizophrenia. While PPI offers benefits such as burden-sharing and confidence-building, challenges like punitive responses from professionals and organizational barriers hinder its effectiveness. Addressing these challenges is crucial for enhancing PPI and improving mental health care in Indonesia.
Waxell Anni, Gustin Lena Wiklund Issues in Mental Health Nursing Norway 2022	Walking Together Toward Freedom.” Patients’ Lived Experiences of Participation in Outpatient Forensic Care	Five patients, one female and four males with an age range between twenty-seven and sixty-three years, volunteered.	The aim of this study was to describe patients’ lived experiences of participation in outpatient forensic psychiatric care	Semi-structured interviews	Service user	Participation in forensic psychiatric care is complex and varies across contexts and individuals (Storm & Edwards, 2013). Patients perceive participation as having both an outer ("doing with") and an inner ("being with") dimension, reducing the impact of mental illness and providing a sense of freedom. Recovery, as reclaiming life, emphasizes active engagement and meaningful relationships. Despite outer dimension restrictions, nurses can support patient involvement, fostering collaboration in care planning.
Wiklund Gustin Lena International journal of qualitative studies on health and well-being. Norway 2021	Being mutually involved in recovery”. A hermeneutic exploration of nurses’ experiences of patient participation in psychiatric care	Five nurses working on the unit, one man and four women. Their nursing experience varied between two years and more than twenty-five years.	This study aims at exploring how psychiatric nurses’ experiences of patient participation could be understood from a caring science perspective.	Participatory research grounded in a hermeneutic, interpretive tradition. Group dialogues	Psychiatric nurses’	Patient participation could be understood as an interpersonal process reflecting the reciprocity in human relationships. This means a shift in understanding of patient participation from procedures related to the planning of nursing care, to understanding participation as a process focusing on the mutual involvement of patients and nurses in the patients’ process of recovery.

Table 4. Themes.

Preferences, barriers, and strategies.

Patient-centered care vs. care interpreted as humiliation.

Interprofessional collaboration and patient participation.

Structural dynamics and professional expectations in patient participation.

Charmaz, K. (2014). Constructing grounded theory: A practical guide through qualitative analysis. Sage Publications.

 Google Scholar

Storm, M., & Edwards, A. (2013). Models of user involvement in the mental health context: Intentions and implementation challenges. The Psychiatric Quarterly, 84(3), 313–327. https://doi.org/10.1007/s11126-012-9247-x

 PubMed Web of Science ®Google Scholar