What outcomes in community mental health research are important to caregivers of people with schizophrenia? An exploratory qualitative analysis of an online survey

Abstract Aims This study investigated outcomes in community mental health research that were important to caregivers of people with schizophrenia. Methods Using an online survey conducted from August 1 to 31, 2020, data were collected from caregivers belonging to the LINE Schizophrenia Family Association. Caregivers identified outcomes important in community mental health research. Two researchers categorized caregivers' statements into research outcomes. Results A total of 132 caregivers completed the online selfreported questionnaire, and 296 caregiver statements were identified. Qualitative analysis identified 17 outcome categories. The caregivers tended to value having more free time, maintaining an appropriate relationship with people with schizophrenia, and being able to cope with their symptoms. Conclusions This exploratory study newly demonstrates the outcomes that caregivers of people with schizophrenia consider important in community mental health research. The findings may be useful in selecting outcomes for future studies of caregivers.

rewards, and satisfaction), and caregivers' perceptions and attitudes toward people with mental illness (e.g., insight, stigma, and efficacy).
Most studies primarily assessed the negative aspects of caregiving, while positive aspects of caregiving have received less attention [4].
Other systematic reviews also pointed out that few studies have focused on caregivers' recovery and well-being [5,6]. Therefore, further research is expected to explore outcomes meaningful to caregivers.
Despite an increasing emphasis on outcomes important to caregivers, the outcomes in most individual studies may still be determined by researchers rather than caregivers [7]. Focusing on caregivers' experiences, needs, and interests in the outcome selection process appears to be important for identifying meaningful goals and sharing research findings. In fact, people with mental illness and researchers often recognized different needs and goals for treatment [8], and this may also be true for caregivers and researchers.
In addition, caregiver involvement has been accelerated by a recent trend toward patient public involvement (PPI), or coproduction [9,10].
Therefore, exploring outcomes that caregivers consider important can be essential to promote future studies that meet their needs.
Although several systematic reviews have summarized experiences or views of caregivers regarding caring for people with mental illness [5,[11][12][13][14], few studies have directly asked caregivers about important outcomes in research, particularly in community-based mental health research settings. This study preliminarily investigated what outcomes are deemed by caregivers of people with mental illness to be important for community-based mental health research.

| Study design and participants
An online, cross-sectional survey was conducted from August 1 to 31, 2020. Participants were recruited from the LINE Family Association of Schizophrenia, which had 238 registered members as of August 1, 2020. The association offers a platform for information exchange and peer support for caregivers of people with schizophrenia using the "LINE" online software. Eligibility criteria were as follows: (a) caregiver of one or more people with schizophrenia and (b) age over 20 years. For example, a caregiver might care for a family member with schizophrenia and look after his or her daily needs. Respondents were invited to participate on a voluntary basis and provided fully informed consent through the internet. The study protocol was approved by the Research Ethics Committee of the National Center of Neurology and Psychiatry (No. A2020-036).

| Data collection
We collected sociodemographic data of participating caregivers, such as age, gender, education, and annual household income. We also assessed care experiences, such as relationship with people with schizophrenia, time spent providing care, and caregiver

| Analyses
Two researchers (NY and TS) independently extracted outcomes based on participants' survey responses and then organized word fluctuation of the responses. Next, related responses were collected and categorized through joint analysis and thorough discussion between the two researchers. Each category whose meaning was ultimately unclear was excluded. For example, responses that discussed the outcomes of people with schizophrenia, rather than those of their caregivers, were excluded. When disagreement occurred between the two researchers, decisions were made based on the advice of SY and MO. The category names were iteratively reviewed to ensure that they reflected the literal meanings of the responses. We shared the analysis results with several caregivers who participated in the survey to obtain their feedback. We then incorporated it into our analysis. A co-author (TK) not involved in the analysis fit 30 randomly selected outcome statements into 17 categories. The agreement rate was calculated using Krippendorff's alpha [16], and the criterion for good reliability was set at 0.8 [16]. Finally, the number of responses corresponding to each category was calculated. The categories are presented in Table 2.

| RE SULTS
A study flowchart is shown in Figure 1.

| DISCUSS ION
This study suggested outcomes that caregivers of people with schizophrenia identified as important in community mental health research. Caregivers tended to value having more free time, maintaining an appropriate relational distance with people with schizophrenia, and the ability to cope with these people's symptoms.
Caregiver burden is considered as the main outcome identified by previous studies, and positive aspects of caregiving, namely caregiver recovery and well-being, have been recognized less frequently [4][5][6]. Since caregiver burden captures the degree of multifaceted burden that caregivers experience from caring for family members and partners over time [17], the results of this study may not cover all aspects of caregiver burden. However, the overall trend toward family burden as an important outcome appears to be similar to previous studies.
The reason for these results may be related to weaknesses in the community-based mental health system in Japan. For example, 90% of health professional work in inpatient settings in Japan, and the number of psychiatric beds is still the highest across the world [18].
In addition, for almost 100 years until 2014, Japanese family members statutorily were obligated to provide care for people with mental illness. A study suggests feelings of care burden of family in Japan is higher than those in Korea [19]. Although there has been a gradual increase in services for people with mental illness, the communitybased mental health system is mainly designed to provide facilitybased services in Japan [20]. In other words, community services are inadequate, particularly for those with severe mental illness or those in the acute phase of recovery who have difficulty going out.
Consequently, caregivers often play a major role in supporting their daily lives. The common outcomes identified in this study may reflect this situation. Specifically, they may indicate that caregivers need a community-based mental health system in which they do not bear so much responsibility for caring for people with mental illness.
The strength of this study is that we worked with caregivers in the development stage of the question and online survey screens TA B L E 2 Ranking of outcomes considered by caregivers of people with schizophrenia to be important in community mental health research

AUTH O R CO NTR I B UTI O N S
NY wrote the first draft of the manuscript, and other authors critically revised the manuscript. All authors approved the final manuscript.

ACK N OWLED G M ENT
The authors would like to thank the members of Pure Light, the LINE Family Association of Schizophrenia, for their invaluable advice on many aspects of the project.

CO N FLI C T O F I NTE R E S T
The authors declare no conflict of interest.

DATA AVA I L A B I L I T Y S TAT E M E N T
Not all data are freely accessible because no informed consent was given by the participating agencies for open data sharing. However, the data are available from the corresponding author on reasonable request, following approval by the Research Ethics Committee at the National Center of Neurology and Psychiatry.

E TH I C A L A PPROVA L
The study was approved by the Research Ethics Committee of the National Center of Neurology and Psychiatry (No. A2020-036).