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

Abstract

Patient participation in mental health care is recognized as essential for achieving positive outcomes. However, the complexities and challenges inherent in this process necessitate further investigation.

Aim

This scoping review aims to synthesize findings from fourteen selected articles to provide a comprehensive understanding of patient participation in mental healthcare.

Method

The review analyzed articles employing various qualitative methodologies, including interviews and observations, to explore patient and healthcare professional perspectives. Articles were selected based on their relevance to the topic of patient participation in mental health care.

Results

The analysis revealed diverse perspectives on patient participation. Patients’ preferences varied, with some preferring shared decision-making while others preferred minimal involvement. Barriers to shared decision-making included fear of judgment and substance misuse concerns. Strategies to manage disagreements and foster trusting relationships were identified. Challenges in implementing patient and public involvement in mental health services were noted, including stigma and inadequate professional training. Interprofessional collaboration was deemed fundamental, although fragmented care pathways and communication breakdowns persisted. Structural conditions and professional expectations significantly influenced patient participation, with a paternalistic approach perpetuating power imbalances.

Conclusion

Despite challenges, the findings underscored the importance of empowering patients in treatment decision-making, promoting collaborative relationships, and addressing barriers to enhance patient-centered care in mental health settings. Insights from this review contribute to the discourse on patient-centered care, emphasizing the need for holistic approaches prioritizing patient dignity and well-being.

Introduction

In the evolving landscape of healthcare, patient participation has emerged as a pivotal aspect, driven by the advocacy of patient groups and endorsed within national healthcare systems. This progressive shift toward patient participation has not only revolutionized the conventional provider-patient dynamic but has also become particularly significant in the field of mental health care (Jørgensen & Rendtorff, 2018; Sangill et al., 2019; Viksveen et al., 2022). This preliminary review sets the stage to explore the multifaceted concept of patient participation in mental health care, shedding light on its importance, implications, and challenges. Patient engagement in mental health care represents a departure from the traditional top-down approach, where people passively receive treatment. Instead, it embraces a collaborative model that empowers individuals by incorporating their voices, preferences, and aspirations into the treatment process (Joergensen & Praestegaard, 2017). Acknowledging the therapeutic potency of such participation, this approach seeks to foster a sense of control, enhance motivation, and cultivate shared partnership of treatment regimens.

Central to this paradigm shift are healthcare professionals who serve as vital facilitators of patient participation. Yet, despite their significance, a comprehensive exploration of the perspectives of both healthcare professionals and patients concerning patient participation in mental health care is notably lacking in the existing research landscape (Jørgensen & Rendtorff, 2018; Viksveen et al., 2022). This review recognizes the critical importance of understanding these perspectives, as they hold the potential to unveil obstacles that hinder the full integration of patient preferences into mental health treatment planning. This scoping review endeavors to systematically map the extant literature and synthesize the viewpoints of healthcare professionals and patients alike. By exploring their attitudes, obstacles, and aspirations regarding patient participation, this review aims to enrich our understanding of the complex interplay between clinical expertise, patient empowerment, and organizational structures. Ultimately, this inquiry seeks to pave the way for innovative approaches that can bridge the gap between professional insights and patient preferences, thereby enhancing the holistic well-being and quality of life of individuals grappling with mental health challenges.

Background

Different concepts are used to categorize patients’ participation within mental healthcare. In this review, we understand patient participation to be the concept of involving patients in decision-making processes concerning their treatment and care. This is pivotal for achieving positive outcomes and promoting mental well-being (Leemeijer & Trappenburg, 2016; Oxelmark et al., 2018; Söderberg et al., 2022). By actively including patients in the therapeutic process, mental health professionals can move away from a paternalistic approach and embrace a more collaborative model where the patients voice and preferences are acknowledged, valued, and integrated into the treatment plan (Biringer et al., 2017; Davidson, 2016a, 2016b; Ness et al., 2014). The empowerment and self-determination that stem from patient participation are paramount in mental health care. When individuals are actively engaged in shaping their treatment plans, they experience a sense of control over their recovery journey, which can significantly boost their motivation and adherence to treatment (Slade, 2009, 2012; Slade et al., 2008). The shift toward shared decision-making nurtures a therapeutic alliance built on trust and mutual respect, fostering open communication and a deeper understanding of the patient’s unique needs and circumstances (Souraya et al., 2018). Furthermore, patient participation enables personalized care tailored each person´s holistic well-being. Recognizing that mental health challenges are diverse and multifaceted, involving patients in decision-making allows for interventions that are sensitive to cultural, social, and individual contexts. This approach acknowledges the uniqueness of each person’s experience and aims to craft interventions that go beyond mere symptom management, targeting the underlying causes and promoting overall mental health and quality of life (Borg et al., 2013; Cottle & Wendy, 2013; Jørgensen et al., 2020b, 2020a, 2021b, 2022).

The role of healthcare professionals in nurturing patient participation cannot be underestimated. As frontline providers, they serve as facilitators and mediators in the process, ensuring that patients are encouraged and enabled to participate actively. The current research concerning the perspectives of healthcare professionals and patients regarding patient participation in mental healthcare is lacking (Jansen & Hanssen, 2017; Jørgensen et al., 2018; Leemeijer & Trappenburg, 2016; Oxelmark et al., 2018).

Nevertheless, grasping these viewpoints is of considerable importance, as it has the potential to pave the way for innovative approaches that prioritize the journey of recovery. Several studies have highlighted a troubling deficiency in involving patients across the entire spectrum of mental health, extending from treatment facilities to local communities. This lack of engagement results in a notable loss of valuable insights into the intricate necessities, aspirations, and anticipations of the individuals in question (Happell et al., 2016; Jørgensen et al., 2023; Ozavci et al., 2022)

Exploring the attitudes of healthcare professionals and patients toward patient participation in mental healthcare could uncover potential obstacles that arise from factors like time limitations, organizational structures, or perceived professional authority. These factors might unintentionally impede the incorporation of patient preferences into treatment planning (Jørgensen et al., 2021b, 2023).

This scoping review aims to systematically examine the available evidence regarding patient participation in mental health care. It seeks to identify and synthesize existing literature that delineates the perspectives of both healthcare professionals and patients on this topic.

This scoping review offers invaluable insights into patient participation in mental health care, informing a collaborative approach to treatment. By synthesizing existing literature, it identifies factors influencing patient participation and suggests interventions to enhance personalized care. Additionally, it informs training programs to improve communication and promote patient-centered care, ultimately catalyzing significant improvements in clinical practice.

Method

The scoping review methodology adopted in this study allows for a comprehensive examination of the existing literature on patients and healthcare professionals’ perspectives on patient participation in mental health care (Arksey & O’Malley, 2005). Systematically analyzing the existing evidence from the viewpoints of healthcare professionals and patients, while embracing a comprehensive approach, will offer significant insights to policymakers, mental health providers, and researchers. This will assist in the development of patient-centric care models that are not only evidence-based but also highly considerate of patient autonomy and empowerment. Our approach to conducting a scoping review is guided by the principles advocated by proponents of systematic reviews, emphasizing rigorous and transparent methods throughout each stage. By documenting the process thoroughly, we enable replication by others, thereby enhancing the reliability of our findings and addressing concerns about methodological rigor (Arksey & O’Malley, 2005). The scoping review method aims to achieve both in-depth and broad results. It aims to gain a thorough understanding of how the subject is addressed in the current body of literature. As familiarity with the literature grows, we may adjust search terms and conduct more sensitive searches to ensure comprehensive coverage. There is flexibility in the search terms, identification of relevant studies, and study selection, allowing for an iterative, reflexive approach throughout the process. Given these distinctions, we will now outline all the six stages of the framework we adopted for conducting our scoping study (Arksey & O’Malley, 2005) (Table 1).

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

Framework stage 1: Identifying the research question

The study was guided by the following research questions:

1. What characterizes the range and nature of the existing scientific literature describing health professionals’ and patients’ perspectives on patient participation in mental healthcare?

2. What characterizes the meaning and opinions of the content of health professionals and patients’ perspectives on patient participation in mental healthcare?

Stage 2: Identifying relevant studies

During our investigation, we conducted internet-based searches on four databases from May to April 2024. The selected databases were specifically relevant to mental health nursing and qualitative peer-reviewed papers, namely CINAHL, PubMed, Scopus, and ProQuest.

An initial systematic search was organized into four distinct search blocks, each centered around the following topics: (A) patient participation; (B) involvement; (C) care, treatments; and (D) mental healthcare hospitals and community settings. Within each search block, controlled search terms from the respective database thesauri were combined with free text search terms.

During the search process, the search blocks were adjusted; (1) search block A was expanded to encompass literature focused on severe mental illness and related terms, (2) search block C was refined to exclude irrelevant studies, and (3) search block D was eliminated. The search was carried out in collaboration with a research librarian and concluded in April 2024. All identified references were imported and managed using Covidence software.

To ensure a comprehensive approach, we opted for broad definitions of synonymous concepts related to involvement and participation, such as ‘included,’ ‘empowerment,’ ‘compliance,’ ‘informed consent,’ and ‘patient-centered care. This decision was made to maximize the chances of capturing all relevant articles on the topic. However, we were also aware that such expansive definitions could potentially result in an overwhelming number of references. To effectively manage this challenge, we deliberately maintained a broad scope during the initial stages of the study. This allowed us to comprehensively cover the literature. As we gained a deeper understanding of the volume and general scope of the field, we could then make informed and efficient decisions on how to handle the large number of bibliographic references (Arksey & O’Malley, 2005).

In addition to electronic sources, checking the reference lists of studies found through database searches, particularly systematic reviews, proved valuable in our study. These reference lists offer additional relevant sources that might have been missed during the initial search.

We did conduct hand-searches of key journals to ensure that articles missed in electronic database and reference list searches were identified. However, in this study, it did not result in an increased number of references beyond the norm (Arksey & O’Malley, 2005).

Stage 3: Study selection

To ensure consistent decision-making, we formulated inclusion and exclusion criteria, similar to systematic review methods (Gough et al., 2017). Inclusion criteria consisted of peer-reviewed full-text academic journal articles from the period of 2012 to 2024, focusing on qualitative studies and involving adults (patients and healthcare professionals). We opted not to include quantitative reviews in our study, as their inclusion might introduce uncertainty into our understanding, making it challenging to grasp the meaning with patient participation. We have refined our inclusion criteria to encompass all relevant studies that contribute to our understanding of patient participation. This adjustment allows us to include studies that explore topics such as shared decision-making, as they provide insights into what patient participation entails in mental health practice. After becoming more acquainted with the literature, we developed these criteria retrospectively. Initially, our search generated 6,592 references, of which 3,148 duplicates were eliminated, leaving 3,444 references for subsequent review. Screening based on title and abstract led to the exclusion of 3,241 references, leaving 203 references for full-text screening. Consequently, 184 was excluded with reasons and 19 references met the criteria for inclusion in the review (Table 2). These 19 studies underwent thorough examination, and all contributed to achieving the review’s objectives.

Table 2. Flowchart.

Stage 4: Charting the data

Charting data included extracting data to describe the range and nature of the included studies (Table 3). Furthermore, the process of charting involved a structured approach to analyzing qualitative data, beginning with a broad understanding of the data, followed by identifying relevant statements, finding commonalities, and ultimately identifying a central explanatory theme (Graneheim & Lundman, 2004).

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.

The process was facilitated by discussions within the research team and the use of software Convidence.

1. Overall Understanding: The first step involved reviewing the studies to develop a comprehensive understanding of the data.

2. Meaning Unit Identification: In the second step, researchers identified and extracted "meaning units" from the data. These meaning units consisted of statements that were relevant to the research questions being investigated.

3. Commonality Identification: The derived meaning units were analyzed in the third step to identify commonalities in meaning. These commonalities were then grouped together and summarized into descriptive categories.

4. Transversal Analysis: The fourth step involved a transversal analysis, which focused on identifying patterns of regularities and variations in the data. This analysis led to the identification of an explanatory theme, which was a central concept or idea that emerged from the data.

Steps three and four were carried out through discussions within the research team (Graneheim & Lundman, 2004).

Stage 5: Collating and summarizing results

Collating and summarizing the results was a process focused on formulating answers to the research questions of our review. This resulted in the material which is presented below in the section ‘Findings’.

Stage 6: Consultation exercise (optional stage)

Additional to the five review stages presented above, a consultative process aided us in identifying persistent issues faced by mental health professionals and patients, drawing attention to areas warranting further investigation. This phase marked the culmination of our work (Arksey & O’Malley, 2005). Drawing from these diverse findings, our next steps involved the sequential presentation and discussion of the compiled material in the forthcoming sections.

Findings

In this section, we present the range and nature of the existing literature describing both patients’ and health professionals’ perspectives on patient participation. After carefully reviewing 203 full-text articles as part of our debt review, we identified 19 articles, several of which emphasize the implementation of shared decision-making. These selected articles provide valuable insights into how healthcare professionals and patients perceive patient participation in the context of mental health. This is followed by findings related to what characterizes the perspectives reported in the included studies.

The findings related to our first research question

This scoping review led to identification of a collection of studies focused on patient participation in mental health care. Patient participation encompasses a variety of concepts within the realm of research, such as involvement, inclusion, shared decision-making, and partnerships. The included studies represent a variety of qualitative methodologies employed to explore different aspects of patient participation (Table 3).

Several of the included studies utilized individual or focus group interviews to gather perspectives on patient participation from mental health professionals, patients, and other stakeholders: Bee et al. (2015); Eliacin et al. (2015); Grundy et al. (2016); Joergensen & Praestegaard (2017); Jones et al. (2021); Jørgensen et al. (2023, 2024); Kortteisto et al. (2021); Laitila et al. (2018); Matscheck & Piuva (2022); Petersen et al. (2012); Sather et al. (2019); Selvin et al. (2021); Solbjør et al. (2013); Souraya et al. (2018); Susanti et al. (2020); Waxell & Wiklund (2022). Some of the studies also used observations, such as those conducted by Matthias and Salyers (2012) and Wiklund (2021).

In these studies, the interview and observation approach provided in-depth perspectives on experiences, perceptions, and challenges related to patient participation. Several studies involved patients, caregivers, service providers, government staff, and researchers to capture multiple perspectives on patient and public participation. Studies by Jørgensen & Rendtorff (2018) and Jørgensen et al. (2024) employed critical discourse analysis to examine how patient participation is represented and governed within mental healthcare contexts. This method uncovered underlying discourses and their influence on patient participation.

Four research inquiries conducted by Eliacin et al. (2015), Matthias and Salyers (2012), Sather et al. (2019), and Souraya et al. (2018) delve into the application and encounter of shared decision-making among patients and health practitioners within the mental health domain. These investigations elucidate hurdles in comprehending patient participation and in assimilating this methodology into the environment of mental health institutions. Research conducted by Susanti et al. (2020) unveiled the potential for participation of patients and the public in healthcare, underlining the eagerness of patients and their families to engage. Furthermore, it illuminated the obstacles faced in engaging patients in mental health services. In addition, the studies by Jones et al. (2021), Matthias and Salyers (2012), and Petersen et al. (2012) employed observational approaches to explore the perceptions of participation among patients and healthcare professionals. These endeavors aimed to construct comprehensive frameworks from qualitative data. Collectively, these studies employ various methodologies, enriching our understanding of patient participation from the vantage points of both patients and healthcare professionals. They elucidate the challenges and significance of participation across diverse mental healthcare contexts.

The findings related to our second research question

The analysis on stage four where we charted the stages resulted in four themes that captures the characteristics of health professionals’ and patients’ perspectives on patient participation in mental healthcare: (i) preferences, barriers, and strategies. (ii) patient-centered care vs. care interpreted as humiliation (iii) interprofessional collaboration and patient participation (iv) structural dynamics and professional expectations in patient participation (Table 4). The research question’s two viewpoints—the healthcare professionals’ perspective and the patients’ perspective—are incorporated into each theme to prevent redundancies. However, our intention is to clarify in the text which viewpoint is being conveyed.

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.

Theme 1: Preferences, barriers, and strategies

All the studies express patients’ diverse preferences regarding their participation in treatment decision-making, ranging from full engagement to minimal participation due to trust in health professionals’ expertise or feelings of inadequacy. Some studies explored patients’ preferences and experiences regarding participation in treatment decision-making (SDM) in mental health care settings (Eliacin et al., 2015; Sather et al., 2019; Souraya et al., 2018). Patients have indicated a preference for collaborative information sharing and joint decision-making with healthcare professionals. Insights gleaned from service users in the study underscored the importance of informed participation in treatment decisions. Emphasizing the need for comprehensive care planning and improved coordination emerged as pivotal approaches to fostering user engagement. These findings hold significant clinical implications for mental health services, suggesting enhancements at both the individual and systemic levels (Laitila et al., 2018). Others preferred partial or minimal participation, trusting their health professionals’ expertise or feeling ill-equipped to participate due to a lack of medical knowledge. Barriers to SDM included fear of judgment, violations of patient-health professionals’ boundaries, and substance misuse concerns (Eliacin et al., 2015; Sather et al., 2019; Souraya et al., 2018). Patient and health professionals’ disagreements were highlighted, with participants employing different strategies to manage disagreements, including changing health professionals or discussing concerns with their current health professionals. Some studies underscored the need for health professionals to foster trusting relationships and communicate effectively to understand patients’ desired roles in decision-making. Additionally, these studies highlighted the longitudinal and dynamic nature of the patient-health professionals’ relationship in mental health care, suggesting that communication and SDM may vary over time depending on the patient’s needs (Eliacin et al., 2015; Matscheck & Piuva, 2022; Sather et al., 2019; Souraya et al., 2018). One study presents a comprehensive framework for understanding patient participation in social work encounters, particularly among individuals facing comorbid substance use and mental illness/neuropsychiatric disorders. At its core, the framework emphasizes the establishment of mutual trust between patients and staff as the foundation for meaningful patient participation (Jones et al., 2021). Patients’ motivation and willingness are highlighted as essential components facilitating patient participation. Moreover, the framework acknowledges the shifting decision-making abilities of patients and underscores the importance of quick and accessible support in promoting patient engagement (Jones et al., 2021). The analysis of patient participation in mental health care settings reveals the influence of language and discourse on patient participation. Paternalistic language used by health professionals constructs a power imbalance, with professionals determining the extent of patient participation based on organizational structures and preferences (Jørgensen et al., 2024). The study underscores the importance of understanding language’s role in constructing social practices and reinforcing power relations within mental health care settings. It emphasizes the need for a patient-centered approach, where patients are empowered to participate in their care decisions and suggests addressing broader social and ideological factors to create more equitable systems (Jørgensen & Rendtorff, 2018; Jørgensen et al., 2024). Additionally, five studies conducted among mental health professionals identified factors enhancing or preventing patient participation in acute psychiatric wards. These factors include patient-related, care-related, professional-related, hospital-related, and healthcare system-related aspects (Bee et al., 2015; Grundy et al., 2016; Kortteisto et al., 2021; Selvin et al., 2021; Solbjør et al., 2013). The extent of patient participation in mental health care is significantly shaped by the hospital environment and culture. Supportive team dynamics, the utilization of innovative methods such as motivational interviewing, and allocating sufficient time for patient consultations are conducive to greater participation. Conversely, traditional practices, stringent rules, and staff burdens may act as obstacles to patient participation (Bee et al., 2015; Grundy et al., 2016; Kortteisto et al., 2021; Selvin et al., 2021; Solbjør et al., 2013). Persistent stigma surrounding mental health remains a hurdle impacting patient participation, but the active engagement of mental health organizations and awareness campaigns can help alleviate this issue. Challenges like inadequate professional training and a lack of continuity in psychiatric care also contribute to hindrances in patient participation (Kortteisto et al., 2021). The study underscores the intricate nature of patient participation in psychiatric settings, emphasizing the need to address factors related to patients, caregivers, professionals, hospitals, and healthcare systems. This holistic approach is essential for fostering meaningful patient participation in treatment and decision-making processes (Kortteisto et al., 2021).

In summary, patient participation in treatment decision-making within mental health care settings is influenced by a complex interplay of patient preferences, provider practices, organizational structures, and broader societal factors. Recognizing and addressing these dynamics are crucial for promoting patient-centered care and enhancing the overall quality of mental health services. In summary, patient participation in mental health care settings is influenced by a complex interplay of patient preferences, provider practices, organizational structures, and broader societal factors. Understanding and addressing these dynamics are crucial for promoting patient-centered care and enhancing the quality of mental health services.

Theme 2: Patient-centered care vs. care interpreted as humiliation

Patients stressed the importance of targeted plans to cope with mental health challenges, expressing concerns about not being heard or considered during hospitalization and discharge (Petersen et al., 2012; Sather et al., 2019; Waxell & Wiklund, 2022). Lack of self-belief and self-efficacy post-hospitalization affected the transition phase negatively. Motivation, expectations, and financial capacity of individuals and caregivers also influenced their participation. Additionally, age and position within the family hierarchy affected decision-making power, while financial constraints sometimes influenced who was involved in decision-making (Souraya et al., 2018). Regarding coercive care, some health professionals resorted to coercive approaches to ensure treatment adherence, including scaring patients, mixing medication into food without disclosure, and physical restraint. While considered ethically inappropriate, coercive approaches were seen as useful by some to ensure medication compliance. Persuasion was favored by some health professionals over the use of force (Souraya et al., 2018). Overall, the study shed light on the complex dynamics involved in decision-making processes among patients with schizophrenia and their health professionals, emphasizing the importance of respecting the autonomy and preferences of patients while also considering the role and influence of health professionals in the decision-making process (Souraya et al., 2018).

Two studies conducted in the UK have uncovered substantial support from mental health professionals for involving service users and carers in the process of care planning. However, the practical application of this approach has encountered challenges due to entrenched organizational cultures, time constraints, and varying levels of user understanding. These findings highlight the urgent need for organizational reforms and comprehensive staff training to facilitate effective user participation, which is essential for achieving the benefits of collaborative, person-centered mental health care. Moreover, these studies have illuminated user perspectives on care planning, making a clear distinction between the tangible document and the operational process. Users have emphasized a model of user-involved care planning encapsulated within a structured framework, with a focus on both procedural and agent-centered elements. Procedural aspects encompass emotional connection, user contribution, currency, consolidation, and consequence, while agent-centered elements include user capability, confidence, professional consultation, choice, and clarity of expression. These insights underscore the importance of aligning care planning with user preferences to drive forward collaborative, person-centered mental health care, serving as valuable guidance for nurses in their practice (Bee et al., 2015; Grundy et al., 2016). Additionally, in Indonesia, there’s a desire for increased participation in mental health services, but several hurdles must be addressed to effectively implement Patient and Public Involvement (PPI). These obstacles include enhancing organizational readiness, tackling stigma, providing training for health professionals, and ensuring that participation activities are relevant and accessible to all stakeholders involved (Susanti et al., 2020). Nurses recognized the importance of patient participation but faced challenges in managing risks, enabling participation, and overcoming barriers to participation. They emphasized the need for tailored approaches to promote patient participation while ensuring patient safety and respecting patient autonomy. Patients often feel that participation in care planning is more of an order than an opportunity, perceiving care planning as something stipulated by authorities, limiting their ability to influence their own lives (Eliacin et al., 2015; Jones et al., 2021; Waxell & Wiklund, 2022). Patients also view discharge and freedom as getting away from unwanted circumstances rather than approaching desirable situations, feeling restricted by the legal framework and the implicit threat of being sent back to inpatient care for any deviations from the care plan (Waxell & Wiklund, 2022). Despite negotiating with health professionals to have some degree of influence over their care plans, patients also feel compelled to adapt to professionals’ decisions to avoid complicating relationships and hindering their progress toward discharge and freedom (Waxell & Wiklund, 2022). The findings of the study highlight the critical role of mutual participation in psychiatric care, emphasizing that patient involvement extends beyond decision-making to include a collaborative journey towards recovery. Nurses in the study acknowledged the importance of caring encounters and relationships, underscoring the significance of mutual connection, storytelling, and shared responsibility in nurse-patient interactions (Wiklund, 2021).

Theme 3: Interprofessional collaboration and patient participation

Interprofessional collaboration is fundamental for delivering comprehensive and coordinated care within mental health settings. However, fragmented care pathways, breakdowns in communication, and institutional barriers often impede collaboration, posing risks to patient outcomes. Addressing these challenges requires a steadfast commitment to cultivating collaborative cultures, enhancing communication channels, and fostering interdisciplinary teamwork across all levels of care delivery. Patients’ participation in mental health care hinges significantly on their motivation and willingness to combat substance use and accept support. Patients must take responsibility for their actions and foster transparency with both themselves and health professionals. This commitment lays the foundation for fostering collaborative relationships between patients and staff (Jones et al., 2021; Jørgensen & Rendtorff, 2018; Jørgensen et al., 2024). Understanding patient participation is complex, as professionals’ interpretations vary, with some using terms like collaboration. Patient participation entails fulfilling patient needs and involves varying degrees of physical and collaborative engagement in treatment. Interviews reveal two primary domains: the patient’s participation in Care and Treatment Planning (CIP) meetings and their role in collaboration between agencies and professionals. These domains underscore the intricate nature of patient participation and collaboration (Jørgensen et al., 2023; Matscheck & Piuva, 2022). Collaboration between mental health care, somatic health care, and patient-led organizations often falls short, leaving patients to navigate challenges like personnel changes, care delays, and disruptions in the transition process. Emphasizing the need for cooperative meetings, information sharing, and patient councils in the community becomes crucial for bridging these gaps (Sather et al., 2019). Establishing an overarching Individual Plan (IP) of care is essential to address power imbalances and promote sustainable integrated care. Dialogue and early engagement in the treatment process are recommended for continuity. Patients advocate for collaboration between Day Patient Centers (DPCs) and community services, emphasizing smooth transitions and continued post-discharge support (Sather et al., 2019). In summary, patient empowerment, patient-centered care, interprofessional collaboration, and integrated care pathways are crucial for effective mental health services and transitions between DPCs and community services. These themes underscore the multifaceted nature of patient participation in mental health care settings and emphasize the need for holistic approaches that prioritize patient autonomy, collaborative decision-making, and system-level interventions to enhance the quality of care and patient outcomes.

Theme 4: Structural dynamics and professional expectations in patient participation

Patient participation in healthcare is significantly influenced by the structural conditions and professional expectations embedded within mental health settings. Health professionals often define the parameters of patient participation within predefined frameworks, reflecting a paternalistic approach that perpetuates power imbalances and limits the scope of patient participation (Jørgensen et al., 2024). The hierarchical structure within healthcare settings places professionals, particularly physicians, at the apex, followed by nurses and patients, wherein patient participation is encouraged but often circumscribed by institutional norms (Jørgensen et al., 2023). The influence of neoliberal principles permeates Danish mental healthcare, accentuating patient self-responsibility and the pursuit of cost-effective treatments. Despite the existence of ethical care discourse, it is overshadowed by legal, rational, and biomedical discourses, underscoring covert challenges to entrenched hierarchical structures (Jørgensen et al., 2023). Patient participation, as perceived by healthcare professionals, is not merely a free choice but is intricately intertwined with organizational structures and professional expectations. Despite acknowledging varying degrees of patient participation, professionals are constrained by institutional norms and practices, shaping the contours of patient participation (Jørgensen et al., 2023). The complexity of patient participation in psychiatric treatment is underscored by the interplay of organizational dynamics, professional norms, and individual patient preferences and resources. Balancing patient autonomy with the imperatives of effective treatment delivery remains a formidable challenge (Jørgensen et al., 2023). The concept of mutual participation in recovery reveals a layered structure consisting of external efforts to facilitate patient participation and internal dynamics promoting a culture of collaboration. Within this collaborative culture, both nurses and patients actively participate in the recovery journey, embodying a shared path toward wellness (Wiklund, 2021). The analysis of patient participation in mental health care settings highlights the profound impact of language and discourse on patient participation. The paternalistic language employed by health professionals perpetuates power imbalances, wherein professionals wield significant influence in determining the extent of patient participation, underscoring the need for a shift toward more equitable and patient-centered approaches (Jørgensen et al., 2024). The study by Matthias and Salyers (2012) highlights how patients and healthcare providers often negotiate rather than argue outright in mental health care settings. This reflects a power difference where providers usually have more control. In decisions about medications, providers take the lead but sometimes let patients decide. This shows where health professionals have a lot of authority, which might limit patients’ freedom to choose. Also, when it comes to things like follow-up appointments, it’s usually the providers who decide, which might not give patients much say Matthias and Salyers (2012).

Discussion

This scoping review synthesized healthcare professionals’ and patients’ perspectives on patient participation in mental healthcare. The study highlighted the diversity of healthcare professionals’ views on patient participation, influenced by experiences training and literature. Patient engagement spans a spectrum from sharing information to active treatment participation, influenced by patient and system preferences. It is also shaped not only by individual choices but also by healthcare system constraints.

The exploration of patient participation in mental health care decision-making reveals a spectrum of preferences, from active engagement to minimal participation. Studies (Eliacin et al., 2015; Sather et al., 2019; Solbjør et al., 2013); Souraya et al., 2018 underscore patients’ desires to share information and make decisions collaboratively with health professionals. However, varying preferences exist, with some patients opting for minimal participation due to trust in professionals or perceived inadequacy. Barriers to shared decision-making (SDM) include fear of judgment, boundary violations, and substance misuse concerns.

Patient-health professional disagreements were noted, prompting the adoption of strategies such as changing professionals, or discussing concerns. Trust-building and effective communication emerged as crucial in understanding patient roles in decision-making. Longitudinal studies highlight the dynamic nature of patient-health professional relationships, emphasizing the evolving communication and SDM needs over time (Eliacin et al., 2015; Laitila et al., 2018; Sather et al., 2019; Souraya et al., 2018).

A comprehensive framework by Jones et al. (2021) emphasizes mutual trust as fundamental for patient participation, especially in comorbid cases. Patient motivation and quick, accessible support are highlighted, acknowledging the evolving decision-making capacities of patients (Jones et al., 2021). Additionally, research reveals the impact of language on patient participation. Paternalistic language constructs power imbalances, calling for a shift toward equitable and patient-centered communication (Jørgensen & Rendtorff, 2018; Jørgensen et al., 2024).

Patients emphasize the need for targeted mental health plans, expressing concerns about feeling unheard during hospitalization and discharge. Various factors, including self-belief, financial capacity, and family dynamics, influence patients’ participation in their care decisions. The study by Souraya et al. (2018) sheds light on coercive care methods, emphasizing the ethical dilemma faced by professionals in ensuring medication compliance. The desire for greater participation in mental health services is evident, but several barriers persist in implementing Patient and Public Involvement (PPI) in Indonesian mental health services (Susanti et al., 2020). Nurses recognize the importance of patient participation but grapple with challenges in risk management, enabling participation, and overcoming barriers. Patient views on care planning and freedom post-discharge underscore the need for mutual participation in psychiatric care (Petersen et al., 2012; Waxell & Wiklund, 2022).

Interprofessional collaboration is crucial for comprehensive mental health care, yet challenges like fragmented pathways and communication breakdowns persist. Patient participation hinges on motivation and willingness, emphasizing the need for patient responsibility and transparency (Jones et al., 2021; Jørgensen & Rendtorff, 2018; Jørgensen et al., 2024). Understanding patient participation is complex, with varied professional interpretations. Interviews reveal intricate patient participation in Care and Treatment Planning (CIP) meetings and collaboration between agencies and professionals (Jørgensen et al., 2023; Matscheck & Piuva, 2022). Challenges in collaboration necessitate cooperative meetings, information sharing, and patient councils to bridge gaps (Sather et al., 2019).

Structural conditions and professional expectations significantly influence patient participation. Health professionals often define participation parameters within predefined frameworks, perpetuating power imbalances (Jørgensen et al., 2024). Neoliberal principles in Danish mental healthcare accentuate patient self-responsibility and cost-effective treatments. Despite ethical care discourse, legal, rational, and biomedical discourses overshadow it, challenging hierarchical structures (Jørgensen et al., 2023).

Patient participation, perceived by professionals, is intricately linked with organizational structures. The complexity in psychiatric treatment participation involves balancing autonomy with effective treatment delivery (Jørgensen et al., 2023). The concept of mutual participation in recovery highlights a layered structure, emphasizing external efforts and internal dynamics for collaborative culture (Wiklund, 2021).

On the flip side, there are researchers who argue that employing structural approaches could hinder the ability to cater to the specific requirements of individual patients. Studies on personal recovery emphasize the importance of paying attention to patients’ goals, with the aim of strengthening empowerment and fostering a satisfying life after discharge (Davidson et al., 2017; Jørgensen et al., 2021a; Kvia et al., 2021).

Informed shared decision-making resonated as an ideal approach, acknowledging that the term "shared decision-making" might fall short of encompassing the depth of patient aspirations for care transitions (Matthias & Salyers, 2012; Sather et al., 2019). The included studies highlighted the positive outcomes linked to patient participation, including the ability of engaged patients to transcend isolation, chart new life trajectories, and contribute to their recovery. Patient empowerment is influenced by factors such as respectful health professional approaches, trust-building, and the recognition of patients’ capacities for self-management. These results are consistent with multiple researchers’ discoveries that engaging patients actively in shared decision-making, which involves tapping into both group wisdom and personal experiences, is in harmony with the principles of the recovery-oriented approach. This approach aims to create the best possible environment for cultivating relationships, nurturing optimism, pursuing objectives, and encouraging empowerment (Davidson, 2016a; Leamy et al., 2011; Pelletier et al., 2020).

While healthcare professionals strive to facilitate patient participation, various barriers persist. Patients with cognitive limitations, previous negative experiences, or mental health conditions might encounter challenges in actively engaging with their treatment. Moreover, the hierarchical structure within mental healthcare, legalistic frameworks, paternalistic tendencies, and resource limitations can impede the realization of true patient engagement. Nevertheless, the findings indicate that a supportive atmosphere, the adoption of methodologies like motivational interviewing and collaborative assessment, and enhancements in the continuity of care can promote more effective patient participation. Jørgensen and Praestegaard have also explored the issue. If health professionals do not anticipate input from patients and fail to engage them, it reflects a paternalistic stance. In this scenario, patients are beholden to the desires of health professionals and are subject to their terms. This approach does not facilitate a constructive recovery process, where patients can evolve and actively participate in their own lives (Joergensen & Praestegaard, 2017; Selvin et al., 2021).

Power dynamics and attitudes proved to be pivotal in the context of shared decision making. Acknowledging the impact of power imbalances and creating an inclusive environment where patients’ voices are genuinely heard emerged as essential elements for successful shared decision making. Patients’ attitudes, shaped by past experiences and interactions with healthcare systems, intersect with healthcare professionals’ receptiveness and openness to patient input. A collaborative approach, which recognizes power dynamics and individual attitudes, forms the foundation for a more inclusive and effective shared decision-making process.

It’s crucial to recognize limitations within the literature we reviewed. The wide range of methodologies used, although indicative of the complex nature of patient participation, may pose challenges in directly comparing and synthesizing findings. Furthermore, our review does not encompass newer developments beyond the selected articles, limiting the scope of our analysis. The scoping review illuminates the intricate landscape of patient participation in treatment and care within mental healthcare. From the complexities of defining patient participation to navigating challenges, fostering patient empowerment, and addressing barriers, the findings shed light on the multifaceted nature of this vital aspect of healthcare. The insights gleaned from this review contribute to the ongoing discourse on patient-centered care, urging healthcare professionals and policymakers to adopt holistic approaches that prioritize the dignity, autonomy, and well-being of patients within mental healthcare settings.

Conclusion

In our scoping review of patient participation in mental healthcare, we’ve revealed a nuanced landscape shaped by diverse preferences, barriers, and strategies across four main areas. Patient preferences vary from active to minimal participation, influenced by trust in professionals and perceived inadequacies. Barriers like fear of judgment and substance misuse impede shared decision-making, while strategies focus on managing disagreements and building trusting relationships over time. Patients emphasize the importance of targeted mental health plans and express concerns about feeling unheard during hospitalization and discharge. Ethical challenges of coercive care methods highlight the necessity for respectful, patient-centered approaches. Effective interprofessional collaboration is crucial for comprehensive mental healthcare, although challenges such as fragmented pathways persist. Patient participation depends on motivation and transparency, necessitating cooperative efforts and involvement in care planning. Structural dynamics and professional expectations significantly impact patient participation, often constraining autonomy within hierarchical structures. A collaborative approach rooted in mutual respect is essential for meaningful patient involvement. Overall, our review underscores the importance of holistic approaches prioritizing patient autonomy and collaborative decision-making. By addressing barriers and promoting patient empowerment, healthcare professionals and policymakers can establish inclusive environments that prioritize patient well-being within mental healthcare settings.

Enhancing mental health care: Insights and recommendations

This review offers valuable insights for both clinical practice and the social research community. In clinical practice, it informs decision-making, enhances communication between healthcare providers and patients, and guides professional development. For the social research community, it identifies gaps in the literature, provides methodological insights, and informs policy implications regarding patient participation in mental health care.

Limitation

The diversity of methodologies employed, while reflective of the multifaceted nature of patient participation, might hinder direct comparisons and the synthesis of findings. Additionally, the scope of the review does not extend to newer developments beyond the selected articles. The scoping review methodology is appropriate for gaining an overview of the extent and nature of existing literature and for identifying research gaps; however, it also has some limitations (Arksey & O’Malley, 2005; Sutton et al., 2019). The review process in scoping reviews does not include quality assessment of the included studies, and findings remain descriptive in nature (Arksey & O’Malley, 2005). This lack of assessment might limit the use of scoping reviews in clinical practice and policymaking (Grant & Booth, 2009). However, scoping reviews serve different aims and may function as a gateway to further research. This scoping review employed a systematic approach to comprehensively examine literature on patient participation in mental health care. Despite this, the search strategy may not have covered all potential sources, and the study’s reliance on published literature could lead to publication bias, as positive or significant findings are more likely to be published. This review included consultation with relevant stakeholders. Including this optional component adds methodological rigor and strengthens the relevancy of the scope of the review based on the views of clinical specialists (Levac et al., 2010).

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Funding

The author(s) reported there is no funding associated with the work featured in this article.