Patients' perspectives on care pathways and informed shared decision making in the transition between psychiatric hospitalization and the community

Faculty of Medicine and Health Sciences, Norwegian University of Science and Technology, Trondheim, Norway Department of Mental Health, St Olav's University Hospital HF, Tiller District Psychiatric Centre, Trondheim, Norway Faculty of Medicine and Health Science, Norwegian University of Science and Technology, Aalesund, Norway Faculty of Medicine and Health Sciences, University of Nottingham, Nottingham, UK

associated with mental health treatment. This context suggests the urgent need for easy access to a range of treatments and providers. 2 The Joint Commission Center for Transforming Health Care (USA) defined transition as the process or period of changing from one state or condition to another and refer to the movement of patients between health care practitioners, settings, and home as their condition and care needs change. 3 There is a growing interest in creating care pathways in mental health to improve the quality of care through enhanced care coordination. Care pathways are understood as interventions for the care management of mental health patients in need of complex health services during a well-defined period of time. 4,5 Patient activation is considered an important and empowering element in health care reforms. It involves giving patients information that they can understand and act upon and providing support customized to their needs so that they are equipped to learn how to manage their own state of health. Activated patients develop their own understanding of and are engaged in their role within health care processes. 6 A recent study in the United Kingdom 7 showed the potential for a lasting negative impact on patients who are not sufficiently involved in admission and discharge processes into and out of mental health care.
Ensuring that these patients have a meaningful say in what is happening to them is vital. The study 7 also identified the loss of the patient's voice at the key transition points into and out of acute inpatient mental health care. Tveiten et al 8

have advised giving patients in a mental
health context a voice to express their concerns and have these addressed.
Research has provided evidence of the benefits of increased patient involvement and raised the visibility of the service user, redefining integrated care and moving beyond policy aspiration. [9][10][11] A study about patients' knowledge and the power imbalance in the doctor-patient relationship supports our findings that patients need knowledge and power to participate in a shared decision-making process. 12 The study offered several recommendations for enhancing this by simplifying the trialled pathway and accompanying guidelines and strategies to improve communication between nurses and general practitioners (GPs). However, a discourse analysis of the concept of patient involvement pointed out the implications for the role of mental health nurses and concluded that they may need to relinquish power if true involvement of patients is to occur. 13 A previous study identified that systems and procedures should be developed to ensure clear responsibilities and transparency at each stage of the pathways of care. A single person should take charge of ensuring sufficient connection and communication between inpatient and community mental health services. 14 Moreover, as reported earlier, 15 the establishment of relationships among the three parties involved (patients, inpatient staff, and community staff) was considered to be of utmost importance in the transition process between inpatient and community mental health care.
It seems obvious and simple that by informing patients and inviting them to discuss treatments options and partake in decision making, their autonomy is respected and registered in more tailored decisions likely to achieve a better outcome and fewer complaints. But there appears to be a clinical inertia to putting such shared decision making into everyday practice. Power and trust seem to be important factors that may increase as well as decrease the patient's dependency, particularly as information overload may increase uncertainty. 16 What is clear is that shared decision making is not a simple or straightforward matter. As Stiggelbout et al 17 put it, "Shared decision making is a complex intervention, and its implementation in healthcare will need multifaceted strategies coupled with culture change among professionals, their organizations, and patients." The concepts shared decision making and patient-centred care are increasingly prominent topics in discourse on quality in health care generally. 18,19 A shared decision-making process can be an especially difficult experience for those patients with profound mental health challenges. Health care professionals need to identify to what degree patients can or are able to engage with decision making, 20,21 not least in the context of care transitions that involve a multitude of health and social care professionals working within and across different organizational boundaries. 22 The movement of patients into and out of acute inpatient mental health wards is also particularly complex because of the potential for coercive practice. Importantly, the transition out of inpatient wards (discharge) back to the community is also challenging.
User involvement is widely referred to in policy, research, and practice discourses. The extent to which this impacts on individual clinical practice and care experiences is unclear. Crucially, the involvement of patients at points of transfer of care from the community to inpatient settings and back to the community is underreported. A main element in the Coordination Reforms in Norway 23,24 relevant for the current study is a commitment to ensure that patients receive optimal health care services through cohesive, integrated patient pathways and recommends a 24-hour follow-up in the community after discharge from hospital.
This study aimed to explore the nature of former patients' involvement and perspectives on their care pathways between psychiatric hospitalization (district psychiatric centre [DPC]) and community mental health services at key transition points.

| METHODS
A qualitative research design with a descriptive approach was used to reveal important factors in care pathways for former mental health patients. [25][26][27] Three focus group interviews were conducted with a total of 10 informants, three men and seven woman with a mean age at 40 years, from (five) different communities. Prior to the focus group sessions, we discussed in great depth which questions to ask in order to obtain information on the specific topic of their own experience of the transition between hospital and community. Interviews were transcribed and analysed thematically where themes describe what patients perceived as facilitating or acting as a barrier in the transition phase. 28,29 In Norway, mental health community services comprise GPs and mental health nurses/social workers who collaborate with somatic health services. In addition, they are expected to cooperate with the mental health specialized services in hospitals. The hospital mental health services can advise the communities on treatment, but the communities make their own decisions for care in terms of how often patients should be visited, what interventions or resources are provided for this from their budget, and subsequent further hospitalization or visits from ambulant teams.

| Process of selection of informants
The leaders in mental health volunteer organizations in the communities and a rural mental health activity centre identified experienced former mental health patients who had been hospitalized.

| Participants and demographics
Ten former patients from five communities who had previously experienced transition into and out of inpatient services (DPCs) were interviewed. Three were attending a rural mental health activity centre, and seven had mental health peer support roles in in the communities. All informants were former patients in DPC with more than 10 years of lived experience in accessing mental health services and being subject to transition processes. They were well-placed to reflect upon what seemed to work/not work in the latter. There were seven women and three men. Because of the richness of the spoken word from the informants, their experience, and their ability to point to factors important for successful transitions, we decided that the three focus groups provided enough information power to enlighten the aim of this study. 30

| Ethics
The study was approved by the Norwegian Centre for Research Data (NSD, project no.51960) with no additional approval required for ethical clearance. The Regional Committees for Medical and Health Research Ethics (REC) concluded that it was not necessary given that the study had full REC approval (REC 2018/1181) (presentation assessment). All phases of the study were conducted according to the Helsinki Declaration 31 and ethical principles in research. Data were transcribed and anonymized accordingly. Written, informed consent was obtained from all informants.

| Focus group interviews
We used a semi-structured interview guide developed with university and health care representatives in the focus group interviews. The informants were asked to describe their views on experiences with care pathway transitions between DPCs and community mental health services. The interviewer guided the focus group discussion according to the written set of topics: planning; cooperation between patient and staff; patient participation; ethical issues; communication including information giving and documentation in all settings; clinical care and treatment; medication; interdisciplinary collaboration; and organization of information among health personnel and patients. An assistant moderator contributed by regularly summarizing and following up key information revealed in the group discussions. 32,33 At the end, we asked general, open-ended questions to gather information that had previously not been expressed. All interviews were audiotaped and transcribed verbatim. The duration of each focus group interview was 90 to 120 minutes. All interviews were recorded, transcribed, and analysed in Norwegian. Quotes that seemed to best reflect themes that emerged were selected. In order to keep interpretations close to the sociocultural context as possible and ensure interpretative validity, the translation into English was done after fulfilment of the content analysis and selection of quotes were completed. [33][34][35]  Substantive codes with similar meanings were sorted into groups and formed categories. Also, properties and dimensions of each category as well as connections between categories were sought. All generated categories were continuously compared with each other.

| Data analysis process
A core category was identified and could be related to the other categories. Four themes of care pathways emerged from final data analysis. 36

| Data analysis
Interviews were transcribed and analysed through thematic text analysis in six phases: familiarizing ourselves with the data, coding, searching for themes, reviewing themes, defining and naming themes, and writing up. 28 Hasson-Ohayon et al, 38 which we were granted permission to use in our study. The analysis of group-level data also involved scrutinizing the themes, interactions, and sequences within and between groups.
We performed an iterative analysis in a systematic, repetitive, and recursive process. The following is an elaboration of each theme with salient excerpts typifying participant statements.

| RESULTS
Four areas of care pathways between DPCs and community mental health services emerged from the analysis as follows (Table 1):

| Patient participation/activation/empowerment versus paternalism and institutionalization
The participants highlighted that they have the knowledge, skill, and confidence to manage their own health, indicating the importance of activation and participation:

| Patient-centred care versus care interpreted as humiliation
To master daily life, the informants pointed to the importance of having a targeted plan to cope and reduce their mental problems. For example, one individual stated

It defines your life, what you can and cannot do, what is important and not important … . (H)
Patients' opinions about the kind of care they needed were not heard or taken into consideration when hospitalized: A richer understanding of people living with mental health challenges might be best achieved in the community setting. The informants emphasized the good conversation in the community as "alpha and omega" and DPC as a place they visit occasionally.

| Interprofessional collaboration or teamwork versus unsafe patient pathways in mental health services
NAV was identified by participants as having a mandatory task to prepare an individual care plan: The informants shared the impression that it is difficult to get an offer from NAV when they are classified as disabled. Informants also tell that the health care specialization leads to a gap in the services: These gaps become bigger and bigger, and patients fall between two chairs. (G,H) The informants experience little interprofessional teamwork between mental health care, somatic health care, and patient-led organizations. There appears to be little cooperation to advance integration across these sectors, as indicated by one respondent with salient dual health challenges: The informants also identified a pressure on DPC to discharge, and patients not ready for discharge must leave. They emphasized that the community is under a huge pressure with limited staff resources in the community setting, especially for mental health nurses. They wanted smooth transitions between the DPC and community services.

| DISCUSSION
The main findings affecting smooth pathways in mental health care found in this study were as follows: (a) the desire of patients to participate in the process of transition; (b) the need to take into account their views and values; (c) the importance of providing patients with enough information and documented plans at the right time; and (d) the importance of collaboration between mental health and other professionals to guarantee that planned activities meet patient need.
The concept of "shared decision making" is not adequate to describe what the informants participating in the study wanted to see in care pathways of transition. Our informants emphasize the need for full sharing of information in order to make the right shared decisions-"informed shared decision making" could better describe their preferred approach to achieving smooth pathways of care.

| Patient participation/activation/empowerment versus paternalism and institutionalization
The participants emphasized having the knowledge, skills, and confi- A recent study about shared decision making in mental health pointed to the importance of a deeper understanding of decisional and information needs among users of community-based mental health services that may reduce barriers to participate in decision making. 44 Shared decision making is more than just efforts to impart knowledge to informants. It also involves engagement and eliciting and integrating decisions. 45 Although former health journals are an important source of information, mental health status and the need for treatment change.
As patients perceived that too much emphasis was alleged to former As mentioned in one of the comments above, current approaches can leave patients feeling like a "package" passed between services that are failing to communicate meaningfully with each other.

| Patient-centred care versus offensive care interpreted as humiliation
Patient-centred care is a widely used term in the health field generally and in mental health specifically. 21 The patient-centred care initiative has been useful for highlighting patient preferences and values, but there is still no universally accepted definition of the term. 46,47 Contrary to a patient-centred approach, some of the informants in our study reported that their opinions were not heard or taken into consid- One of the patients in our study reported that without being given any control, the psychiatrist simply had to be trusted. To achieve better treatment compliance, the transition should, as far as possible, be a shared decision with the patient. This depends on building a good relationship in the clinical encounter so that information is shared and patients are supported to deliberate and express their preferences and views during the decision-making process. 51 Several tools could contribute to this, not least providing the patient with enough information to be able to make informed decisions. In line with this, Miles and Asbridge pointed out that it will probably be best to move from an "evidence-based, patient-focused" ideology to an "evidenceinformed, person-centred health and social care" in order to increase the person-centeredness of care provided. 52,53 Shared decision making promotes the use of research knowledge, and evidence-based medicine asserts that the inclusion of patient preferences, along with scientific evidence and clinician skills, should underpin medical decision making. [54][55][56] As care pathways are grounded in evidence-based medicine and evidence-based practice, clinical guidelines and best practice should intend to realize and integrate the best research evidence with clinical expertise as well as patients value to facilitate clinical decision making. [54][55][56] Being given the opportunity to decide on their care could also increase patients' self-esteem and thus sense of control during transitions between services, which can be stressful and experienced as paternalistic. 39,42,57 The informants reported that having staff advocating for them and their perspectives strengthened their self-esteem.
Informants wanted to be challenged to get back into work or education but not to be pushed too hard in this regard and also to be respected for whatever level or achievement they choose to attain.
This accords with Hasson-Ohayon, 38 who pointed to the importance of supportive relationships and work in the transition from psychiatric hospitalization to the community.
One of the informants suggested an important principle: If something is taken away from patients, something should be given back in return. For example, the informant proposed that if their driving licence was taken, they should be empowered by access to public transport in replacement. This reciprocity could transfer to other situations as well. Some patients are reluctant to be admitted to a hospital or sometimes to go back to the community. If health personnel admit or discharge against the patient's own will, additional effort should be made to convey the benefits of being admitted or discharged.
The informants wanted the community services to be more in contact when they were admitted to hospital so that patients had the benefit of continuity on discharge and to ensure strong links between different resources and providers. Patients do not live in hospitals; they live in the community, in their own homes. The collaborative practice is therefore of the utmost importance to develop a care plan that truly and meaningfully advances community living and minimizes the likelihood of further future admissions. This will require enhanced collaboration and coordination to provide appropriate and safe care across inpatient and community care.

| Interprofessional collaboration or teamwork versus unsafe patient pathways in mental health services
Informants reported a lack of interprofessional collaboration between teams working in mental health, somatic health, and user-led organizations. A Norwegian study 58  The DPC together with the patient and health personnel from community services should undergo a clear plan before discharge, with time allocated to decide further treatment and activities in the community to make it easier for appropriate follow-up. A low threshold for inviting other personnel from, for example, NAV, should be initiated in order to get necessary processes started. This is in line with an earlier study. 14 Improved information sharing within and/between all care systems is imperative in order to strengthen patients' participation in decision making and ownership of care plans so as to improve compliance.
The importance and value for the patient of maintaining therapeutic links at DPC while in the early stages of transition back into the community were strongly recommended. Also, as reported earlier, 15 both digital and telephonic sharing of information and communication should be implemented before admission to a hospital-based service and before and after discharge back to the community.
The informants in our study identified problems in community services due to severe workload pressures, especially for the mental health service, and with patients not being prepared for discharge.
The informants wanted more help in the underresourced community setting, particularly on evenings and weekends.

| Limitations and strengths of the study
The findings of the present study are non-generalizable but offer valuable insights and understanding about the phenomena of care pathways in the transition between inpatient DPCs and community mental health services. We would like to point out that our national health system could be different from other countries. Despite the small sample size, we derived a rich and contextualized information from former patients about factors that were perceived as either facilitators or barriers in the care pathways for this transition. Such findings can assist in tailoring the organization of care pathways to enhance the patient experience of mental health care transfers.
In hindsight, we see that our inclusion of patients having repeated experience of pathways of mental care could have led to having missed information of how first-time patients experience the transition between hospital and community. We acknowledge that our focus has been the health planning system in a region in Norway, and different findings may emerge from other regions in this country and other territories. Our findings indicate that further and more comparative research could test and build upon these initial findings.

| CONCLUSION AND RECOMMENDATIONS
Person-centred care seems to embrace most of the statements concerning improving pathways of care. Patients should be an active part of the treatment planning. That is, their opinions should be emphasized, and they must have time to read documents about themselves, especially during the transition period between hospitals and communities. To prevent humiliation in mental health care, person-centred care was recommended.
The need for process participation, having enough information and documented plans at the right time in the pathways, in collaboration with the right professionals with the right abilities to make planned activities happen, was reported as important. There was a strong emphasis on having a holistic understanding of patients' health needs and meeting these with full sharing of information in shared decision making. Informed shared decision making could better describe the preferred approach to achieving smooth pathways of care. Also, 24-hour ambulant teams in the community were emphasized together with the recommendation that the community should include former patients as consultants to ensure that patients' experiences, voices, and opinions are heard.
We recommend further longitudinal research to investigate trends in patient involvement and participation in developing enhanced, wellorganized transitions and specifically to determine best practices for shared interprofessional working according to pathway of care standards.