Perspectives on the continuing community lives of individuals with mental disabilities in regional Japan: from the viewpoint of personal recovery

Abstract

Objective

Efforts have been made in Japan to transition individuals with mental disorders from inpatient medical care to community life. To promote the development of a community-based comprehensive care system that effectively addresses mental disorders, it is essential to clarify the issues from an individual’s perspective. This study aimed to examine the perspectives of individuals with mental disorders who have experienced long-term hospitalization to support their continued life in the community from the viewpoint of personal recovery.

Materials and Methods

A descriptive, qualitative study was conducted. Nine individuals with mental disabilities living in Japan were interviewed. The interviews were conducted between September 2021 and December 2023 using a semi-structured format guided by the interview protocol. The interview transcripts were analyzed using reflexive thematic analysis.

Results

Seven themes regarding future life were identified: “desire to live in one’s own way”, “realizing hopes and goals”, “desire to connect with the society and others”, “positive attitude toward the future”, “concerns and preparations for one’s own later life and that of one’s family”, “an uncertain future”, and “improvement of physical symptoms”. Eight themes associated with issues in community living were identified: “difficulty in controlling symptoms and self-management of medication”, “impact of deteriorating health on daily life, employment, and studies”, “social withdrawal and loss of connection with others”, “excessive interference from family members and deterioration of relationships”, “caring for elderly parents and their health issues”, “lack of understanding and support from others”, “difficulty in utilizing public support”, and “sustainable housing and financial issues”.

Conclusion

Professionals must believe in the ability of individuals with mental disorders to achieve personal recovery and persistently support their choices and decisions. It is necessary to build a recovery-oriented and comprehensive community care system that responds to mental disorders based on the needs of community-dwelling patients.

Introduction

Approximately 4.19 million people in Japan have mental disorders, of whom approximately 300,000 are inpatients and 3.89 million are outpatients¹⁾. This represents an approximately 1.6-fold increase from 15 years earlier when the number was approximately 2.58 million. In Japan, the average psychiatric inpatient stay is 277 days²⁾, significantly longer than that in other countries. Japan’s Vision for Reforming Mental Health Care and Welfare was formulated in 2004 and emphasized community-based institutionalized care. In 2005, the Services and Support for Persons with Disabilities Act was enacted, made services available regardless of the type of disability, and established a system in which municipalities provided services in a unified manner. Therefore, efforts have been made to facilitate the transition of individuals with mental disorders from inpatient medical care to community life. However, the readmission rate of patients one year after discharge was 37%³⁾. Many patients are unable to continue living in the community and are repeatedly admitted and discharged from hospitals. Prefectures have implemented projects to support hospital discharge and the transition of long-term psychiatric patients to community life. Committees have also been established to develop comprehensive care systems and ensure that individuals live independently and peacefully in their communities.

Previous studies of individuals with mental disorders living in the community have found that community mental health services face challenges in providing comprehensive care for individuals with persistent disabilities outside the asylum⁴⁾. Additional challenges include inadequate workplace support⁵⁾, social stigma against mental disorders⁶⁾, and reliance on shared residential accommodation with live-in staff⁷⁾. Many individuals continue to experience such difficulties, even after their symptoms subside⁸⁾. Individuals with mental disorders may experience a loss of connection because of long-term hospitalization and feel lonely as they struggle to gain acceptance in a new and unfamiliar community⁹⁾.

Therefore, the concept of recovery is gaining attention in the field of mental healthcare. This concept can be understood from both the clinical and subjective perspectives. From a subjective perspective, personal recovery in the mental health context is defined as “the process of changing one’s attitudes, values, feelings, goals, and skills to live a satisfying life within the limitations caused by illness”¹⁰⁾. Leamy et al.¹¹⁾ identified the characteristics of the recovery journey, processes, and stages through a systematic review. Engagement in community activities not only enhances social connections but also promotes a sense of belonging and purpose, which are essential for personal recovery.

While previous studies have explored the issues and difficulties faced by individuals with mental disorders in community living, insufficient attention has been paid to their thoughts and aspirations regarding the future. To promote the development of a community-based comprehensive care system that effectively addresses mental disorders, it is essential to clarify the issues from an individual’s perspective.

This study aimed to examine the perspectives of individuals with mental disorders who have experienced long-term hospitalization to support their continued life in the community from the viewpoint of personal recovery.

Materials and Methods

Study design

A qualitative descriptive study was selected, emphasizing the interpretation of the participants’ experiences¹²⁾.

Study population

The participants were individuals with mental disabilities living in a mid-sized city in regional Japan who used welfare services for the disabled. All patients had been hospitalized for more than one year because of mental illness and had been living in the community for more than six months after discharge. The participants were introduced by the facility director or consultation support specialist and agreed to participate in the study. Long-term hospitalization because of mental illness is defined by the Ministry of Health, Labour, and Welfare of Japan as a stay of more than one year. Study participants were defined as individuals who had been living in the community for more than six months following discharge, as approximately 30% of this population was rehospitalized during this period³⁾. The participants were between 20 and 64 years of age and of any sex. Patients admitted to adult wards and those with cognitive impairment were excluded. The sample size was based on a previous study that focused on the perspectives of individuals with mental disabilities¹³⁾, and informed consent was obtained from nine participants. The researchers followed the standard reporting guidelines for qualitative research (SRQR).

Data collection

The interviews were conducted between September 2021 and December 2023 using a semi-structured format guided by an interview protocol and lasted approximately 60 min per participant. Interviews were held at the location of the participants’ choice to ensure privacy. The interviews included open-ended questions such as “How would you like to live in the community in the future?”, “What kind of relationships would you like to cultivate within the community in the future?”, “What types of relationships and roles do you have with peers with similar illnesses or disabilities?”, “What difficulties did you encounter in your daily life?”, and “What type of support do you receive when facing issues in your daily life?”. These questions explored current issues in community living and aspirations for the future from the viewpoint of personal recovery, with reference to previous studies^{14, 15)}. The interviews were recorded using a digital voice recorder, with participants’ consent.

Data analysis

Verbatim transcripts were generated from these recordings. Transcript segments articulating future aspirations and issues associated with sustaining community living were extracted and organized. Subthemes and themes were developed in increasing levels of abstraction.

This study was conducted based on interpretivism to emphasize the meaning and interpretation of the participants’ experiences. The results were analyzed using Reflexive Thematic Analysis¹⁶⁾, which included six distinct but interconnected steps: (1) familiarization, (2) generating initial codes, (3) generating themes, (4) reviewing themes, (5) defining and naming themes, and (6) writing. Data collection and analyses were conducted simultaneously. The researchers discussed the codes and themes until a consensus was reached. Differences in opinion were discussed again to reach a final agreement. The validity of the results was analyzed using MAXQDA 2022 data analysis software (VERBI Software GmbH, Berlin, Germany).

Ethical considerations

Informed consent was obtained from all the participants. This study was approved by the Ethics Committee of Niigata University (approval number: 2020-0436).

Results

Overview of participants

Table 1 shows the general information of the nine study participants. Two, one, four, and two participants were in their 30s, 40s, 50s, and 60s, respectively. Four patients were diagnosed with bipolar disorder, and five with schizophrenia. The average duration of hospitalization was four years (range, 1–10 years). Following discharge, the average duration of community living was 10.7 years (with a minimum of one year and a maximum of 25 years).

Table 1. Overview of participants.

	A	B	C	D	E	F	G	H	I
Gender	woman	male	woman	woman	woman	woman	male	male	male
Age	50s	60s	30s	40s	50s	60s	50s	30s	50s
Total length of hospital stay	10 years	6 years	5 years	4 years	1 year	4 years	3 years	2 years	1 year
Period of community living after discharge	16 years	1 year	2 years	13 years	25 years	8 years	20 years	1 year	10 years
Household composition	Living alone	Living with wife	Living with husband and son	Living alone	Living with father	Living with mother	Living with wife	Living alone	Living alone
Disease	Bipolar disorder	Bipolar disorder	Bipolar disorder	Schizophrenia	Bipolar disorder	Schizophrenia	Schizophrenia	Schizophrenia	Schizophrenia

Thoughts about the future

As shown in Table 2, seven themes and 15 subthemes were extracted as thoughts about future life. Themes are listed in quotation marks, subthemes in brackets, and participants’ own words in italics.

Table 2. Thoughts about future.

Themes	Subthemes	Representative codes
Desire to live life in one’s own way	Continuing living a peaceful life while maintaining the status quo	I want to live as long as possible for the next 10 years.
	Expressing their true emotions	When I’m in pain, I want to say it’s painful, when I’m sad, I want to cry and think I’m sad, when I’m happy, I want to laugh and think I’m happy.
	Enjoying leisure activities	On nice days, I like to go for walks, drive, or go somewhere a little far with friends.
Realizing hopes and goals	Wanting to have a life with pets	I don’t have any pets, but I would like to get one when I have more money.
	Desire to get married	My dream is to get married and make my wish come true.
	Study aspirations	I want to save money and go to college.
	Desire to work and become independent	In the future, I would like to continue working through support for continued employment.
Desire to connect with the society and others	To continue and expand their social activities	I want to be more active and get out into society.
	Connections and mutual help with others	I want to treasure the friends I made at the daycare center and workshop.
Positive attitude toward the future	Keeping a positive attitude	I’m starting to feel negative, but I’m going to raise my motivation a little and think positively.
	To strive for the future	You need to work hard within your capabilities.
Concerns and preparations for one’s own later life and that of one’s family	Concerns about what will happen after their death	I’m thinking of gradually working towards my end.
	Concerns and preparations for the death of a family member	Worried about the future and what will happen after their parents pass away.
An uncertain future	An uncertain future	Every day is hard work and I can’t think of anything else.
Improvement of physical symptoms	Improvement of physical symptoms	I want to live a life free from physical discomfort.

“Desire to live life in one’s own way”

Regardless of the length of time that they had spent living in the community after discharge, participants expressed a desire to [continue living a peaceful life while maintaining the status quo], where their symptoms stabilized and subsided while remaining in their current home. In addition, if they had many connections with friends or hobbies, they spoke of [enjoying leisure activities], such as going on drives with friends whom they met at the facility, continuing their music, and studying English. They described wanting to [express their true emotions], such as joy, anger, sadness, and happiness, as they were and having previously suppressed their feelings without anyone listening to them.

I would like to live as I am now for another 10 years. (Participant A)

“Realizing hopes and goals”

With respect to future hopes, participants talked about [wanting to have a life with pets] when they had enough money. They also mentioned their [desire to get married], their hope of saving enough money to attend college, and their [study aspirations].

Because their disability pensions alone were insufficient, or because some received welfare benefits, they expressed a [desire to work and become independent], either through welfare employment, such as continuous employment support, or by running a coffee shop or food truck.

I want to work, save money, and go to college. (Participant H)

“Desire to connect with the society and others”

Some participants who had been living in the community for 20 years wanted [to continue and expand their social activities] by actively participating in musical and peer support activities, including presentations for individuals with disabilities and talking about their experiences of illness. In terms of [connections and mutual help with others], the participants expressed a need for meaningful relationships, not just a place to belong. Furthermore, they felt confident in their ability to live independently and support one another.

Right now, I’m not a recluse, but I’d like to be more active, to get out into society. (Omitted) Even if it’s not work, I think it’s good to meet different people and join clubs as much as possible. (Participant E)

“Positive attitude toward the future”

One respondent said that she hoped to increase her motivation by [keeping a positive attitude] and changing her mindset when prone to negative thoughts. She notes that, although it is natural to take things more slowly with age, it is still important to [strive for the future] by continuing to make an effort within one’s abilities.

I think it’s okay to try your hardest within the limits of what you can do. There are a lot of professionals and supporters who say you don’t have to push yourself, but if you don’t push yourself, you’ll become a failure as a person, so I think you have to try a little harder. (Participant G)

“Concerns and preparations for one’s own later life and that of one’s family”

While the participants expressed optimism about their future lives, they also had [concerns about what would happen after their death]. Because they were single, they worried that no one would be there to take care of them after their death, and they were thinking about working hard to prepare for the end of their lives. In addition, those in their 50s expressed anxiety about the deaths of their wives and elderly parents and felt the need to prepare for the future by talking with their parents, reflecting on [concerns and preparations for the death of a family member].

I worry about the future, what will happen after my parents pass away. (Participant E)

“An uncertain future”

Some individuals reported facing [an uncertain future] because their parents were elderly, and they were worried about where and how they would live after their parents passed away. However, they still wanted to continue with their hobbies such as learning English.

What will I do when my mother dies? I haven’t thought about where I want to live or what kind of life I want to live. (Participant F)

“Improvement of physical symptoms”

Participants with physical ailments wished to live free of these conditions and hoped for [improvement of physical symptoms].

For now, I want to live a life without muscle stiffness. (Participant I)

Issues in continuing community life

In Table 3, eight themes and 27 subthemes were extracted as issues associated with continuing community life. The themes are listed in quotation marks, subthemes in brackets, and participants’ self-statements in italics.

Table 3. Issues in continuing community life.

Themes	Subthemes	Representative codes
Difficulty in controlling symptoms and self-managing medication	Difficulties in managing symptoms	Even after being discharged from the hospital and thinking that he had settled down, he started to be admitted and discharged again and again.
	Difficulties due to symptoms	Being in a dissociative state is difficult, and the most difficult thing is not feeling like I’m in trouble.
	The need for continuous self-management of medication	If I don’t take my anxiety medication, my heart palpitations are intense.
	The difficulty of regular outpatient visits and commuting	It’s fine if I’m feeling well, but if I’m not, it’s difficult to go and get my medicine.
Impact of deteriorating health on daily life, work, and studies	Difficulty shopping and preparing meals	It’s a hassle when I’m sick and there’s no food in the fridge.
	Difficulty with housework when ill	There are times when I can’t sleep or get up, and I’m really scared that my life will no longer function.
	Limitations in activity because of physical symptoms	I can’t sleep because I’m worried about the discomfort in my legs.
	A loss of confidence in raising children	I was told I couldn’t raise a child on my own, so I was scared and lacked confidence.
	Experiencing the pain of being unable to step away from childcare, even during difficult times	I wanted to get away from my child because he would hit me or yell at me, but he told me to play with him, and that was painful.
	Difficulties in both working and education	I thought about taking a leave of absence and then returning, but I was told it would be better to quit, so I submitted my resignation.
Social withdrawal and loss of connection with others	Withdrawal and loneliness	Losing my parents left me feeling depressed and I stayed at home.
	Loss of connection with family and others	Even if you become close while in hospital, you may become estranged after being discharged.
	Difficulty in building new relationships	Even if you want to connect, you may not be able to muster the courage or take action.
	Lack of social interaction with neighbors	The only connection I have is through the hospital, and I have no connection to the local community.
Excessive interference from family members and deterioration of relationships	Excessive interference from family	They were worried that my condition would worsen again and that I wouldn’t be able to continue living alone for long.
	Harassment and violence from family members	I had a decades-long feud with my brother and suffered abusive violence.
	Deterioration of family relationships	There has always been a lot of stress in the home.
	Hospitalization at the expense of the family	My family said they had reached their limit and I was hospitalized.
Caring for elderly parents and their health issues	Caring for elderly parents and their health issues	The parent who lives with me also has a chronic illness and is undergoing treatment.
Lack of understanding and support from others	Lack of people to talk to with confidence	There was no one around me to whom I could express my feelings.
	Lack of support from people close to them	There is no one I can turn to immediately when I feel unwell.
	Lack of understanding and prejudice from others	The welfare officer judged me based on my appearance that I would be able to work.
Difficulty in utilizing public support	Difficulty in communicating with support workers and distrust	There is an atmosphere that information is being shared behind closed doors, and the sense of distrust is lingering, making it difficult to talk comfortably.
	Lack of public services and complicated procedures	There are not many continuing employment support providers (around me), so the range of choices is limited.
Sustainable housing and financial issues	Securing a place to live after the parents’ deaths	I am worried about what I will do if my mother dies. I don’t want to go to a facility, and some facilities won’t let me in if I need assistance.
	Securing a place to live after being discharged	The apartment he wanted was not available, so he waited for more than two years before finally being able to leave the hospital.
	Financial difficulty	I don’t want to be in a situation where I have no choice but to become dependent on public assistance if I develop a serious mental illness.

“Difficulty in controlling symptoms and self-managing medication”

A few months after discharge, the patients experienced declining health status, leading to repeated hospitalizations. They felt the [difficulties in managing symptoms], including side effects from medication adjustment and flashbacks to injections.

They also had [difficulties due to symptoms], such as experiencing a dissociative state and being unable to see themselves objectively (distress). In addition, they spoke of [the need for continuous self-management of medication], mentioning that they had stopped taking medication when they first became ill because they did not know what would happen. Because their health deteriorated, they also reported difficulty in going to the hospital, such as [the difficulty of regular outpatient visits and commuting], particularly if they intended to live in the community for a long time. They felt that day care was insufficient; thus, they stopped going.

I found an apartment and was discharged from the hospital, but after about two months, my symptoms recurred, although it was probably mildly manic, so I was hospitalized again. (Participant B)

“Impact of deteriorating health on daily life, work, and studies”

Those who lived alone sometimes encountered [difficulties shopping and preparing meals] because of their physical condition. In addition, owing to the daily fluctuations in their physical condition, they sometimes felt unwell in the evening and were unable to wash dishes or perform other cleaning tasks, making [difficulty with housework when ill] an issue. Furthermore, Participant A, in his 60s, with a history of physical and mental illness, experienced [limitations in activity because of physical symptoms], such as difficulty moving the body or having to focus on treating a physical illness.

Depending on my physical condition, there are times when I can’t hold a knife and times when I can hold a knife very well. I can cook rice, and I can manage to make miso soup, but I have trouble with side dishes. (Participant A)

Participants who were raising children expressed anxiety about parenting and [a loss of confidence], as people around them often told them that they could not raise their children on their own. They found it particularly difficult to manage housework and childcare when they were unwell. Some reported [experiencing the pain of being unable to step away from childcare, even during difficult times] and wanting to leave the situation to avoid yelling at or hitting their children but felt distressed when told to play with them.

We spend the whole day together, so I’m worried about raising them. (Participant C)

Although Patient A qualified for his profession, he had to stop working because of hospitalization caused by deteriorating health and encountering [difficulties in both work and education].

I thought about taking a leave of absence and then returning to work, but my doctor said that I would be falling behind other people who had joined the company at the same time as me, so it would be better for me to quit my job, so I submitted my resignation. (Participant A)

“Social withdrawal and loss of connection with others”

Some of the participants described their experiences of [withdrawal and loneliness]. One became depressed after losing a parent and stayed home, whereas others sought connections with friends to alleviate their loneliness. Several participants also reported becoming estranged from their family because of discord or from peers with similar illnesses after discharge from the hospital or moving to a new area, highlighting a [loss of connection with family and others]. Furthermore, [difficulty in building new relationships] was also evident; although participants wanted to connect with others, they often lacked courage and avoided interactions. In addition, more than half of the participants reported only exchanging greetings and engaging in small talk with neighbors, indicating a [lack of social interaction with neighbors].

After I left my parents’ house, I started living alone, and during the time before I met my wife, I became estranged from my family and relatives. I was lonely, and I didn’t talk to anyone at work. Even now, when I think about it, it was a really dangerous situation. (Participant G)

“Excessive interference from family members and deterioration of relationships”

In terms of [excessive interference from family], some participants wanted to live alone and independently; however, their families were opposed to it and sometimes spoke in a commanding tone, making it difficult for the participants to express their opinions. Other participants spoke of [harassment and violence from family members], including experiencing violence from siblings resulting from decades of feuding. Some participants reported [deterioration of family relationships]. Because the parents of these participants were elderly, their [hospitalization at the expense of the family] increased, and they described times when the family felt that the participants had reached a limit and had to be hospitalized.

They were very against me living alone. When I was living alone in Tokyo, I had gotten sick and been hospitalized, so they were worried that I would get sick again or that I wouldn’t last long. (Participant A)

“Caring for elderly parents and health issues”

Among the participants in their 50s and 60s, some had parents who themselves needed care, and they were worried about providing [care for elderly parents and their health issues] when something happened to them.

My father is still in good health, so there’s nothing in particular, but I don’t know what will happen in the future, and if something happens to my father, I think we’ll start to get more consultations about nursing care. (Participant E)

“Lack of understanding and support from others”

Although the participants were connected to services, they had no one with whom to share their painful feelings; they felt a [lack of people to talk to with confidence]. Furthermore, owing to a [lack of support from people close to them], participants found themselves without any close individuals they could rely on when their health was poor. Citing a [lack of understanding and prejudice from others], participants spoke of being judged by welfare officials as unable to work because of their appearance. Furthermore, after being called a term for feeling discriminatory against individuals with mental disabilities, participants stopped hanging out with friends.

I was connected to the service, but I couldn’t talk about my troubles. I didn’t have anyone I could talk to comfortably for a long time. (Participant C)

“Difficulty in utilizing public support”

One participant who had been living in the community for 20 years reported about the [difficulty of communicating with support workers and distrust], as the support staff changed every few years. Regarding the use of welfare systems, some felt that there was a lack of support for employment continuation, and those who lived alone had difficulty applying for guardianship, feeling a [lack of public services and complicated procedures].

There was a strong feeling that information was being shared without my knowledge (omitted), so in the end I wasn’t informed or consulted, which was really disappointing. I don’t know if it’s still the case now, but I can’t shake the feeling of distrust, and I can’t talk to them in a comfortable way now. (Participant C)

“Sustainable housing and financial issues”

Participants in their 50s and 60s were concerned about their leases if something were to happen to their mothers, who acted as their guarantors, and about where to live after their mothers, whom they live with, pass away; therefore, [securing a place to live after the parents’ deaths] was an issue. Furthermore, they hoped to find an apartment run by the hospital; however, they could not be discharged until a place to live became available, making it difficult [to secure a place to live after discharge]. They felt that their disability pensions were insufficient and that they had no choice but to rely financially on their families, which put them in [financial difficulty].

I decided to live in an apartment run by the hospital that didn’t have a manager. That was all fine, but then there were no vacancies, so I waited for over two years until one finally became available, and I was discharged from the hospital. (Participant B)

Discussion

Thoughts about the future of individuals with mental disabilities who have experienced long-term hospitalization

Participants expressed a “desire to live life in one’s own way”, “realizing hopes and goals”, and a “desire to connect with the society and others”, along with a “positive attitude toward the future” and hopes for the “improvement of physical symptoms”. However, they also expressed concerns about the future, such as “concerns and preparations for one’s own later life and that of one’s family” and “an uncertain future”.

Among the items associated with the “desire to live life in one’s own way”, the theme of [continuing to live a peaceful life while maintaining the status quo] aligns with findings from a previous study^{13, 17)}, which indicate that maintaining the status quo in daily life by managing one’s health is crucial for individuals attending workshops.

Many participants expressed a strong “desire to connect with the society and others”. Furthermore, just as maintaining a positive attitude is crucial for sustaining mental well-being, fostering a “positive attitude toward the future” is thought to aid individuals in contemplating their lives and facilitating their personal recovery.

In the Substance Abuse and Mental Health Services Administration’s (SAMHSA) working definition of recovery¹⁵⁾, self-determination and self-direction are the foundations of individuals’ recovery, as they define their life goals and design unique paths toward them. Additionally, recovery is supported through relationships and social networks that serve as catalysts for the recovery process. Many participants pursued personal recovery.

Some participants had positive thoughts about their future lives; however, they also spoke of “concerns and preparations for one’s own later life and that of one’s family”. Many respondents expressed worry and anxiety about what would happen after their elderly parents passed away¹⁸⁾, and this concern was shared by both the patient and family members. These participants may have been unable to form a concrete image of the future because the harsh realities of financial difficulties and anxiety about their lives after their parents’ death clouded their outlook¹⁹⁾. Several studies have been conducted outside Japan on the risk of mental disorders in children and adolescents following the death of a parent²⁰⁾ and mental illness in parents after the death of a child²¹⁾. However, there has been limited research on the anxiety experienced by adults with mental disorders following the death of a parent. This anxiety about life after a parent’s death may be a unique issue in Japan stemming from Japanese family culture.

In addition, those who felt pain and activity restrictions because of physical discomfort, such as muscle stiffness, hoped for “improvement of physical symptoms”. Individuals with schizophrenia have reduced life expectancy, lower cardiorespiratory and muscular fitness, and an increased risk of cardiovascular disease, metabolic syndrome, obesity, hypertension, and hyperlipidemia compared with the general population²²⁾. Individuals with mental disorders hope for clinical recovery as relief from physical symptoms, not only mental symptoms.

Issues facing individuals with mental disorders who have experienced long-term hospitalization in Japan in continuing to live in the community

The issues identified in this study—including “difficulty in controlling symptoms and self-managing medication”, “social withdrawal and loss of connection with others”, “excessive interference from family and deterioration of relationships”, and “caring for elderly parents and their health issues”—closely align with those reported in previous studies^23,24,25) affecting individuals with mental disorders living in the community. Additionally, the issue of the “lack of understanding and support from others” corresponds with the findings of previous studies highlighting the difficulties experienced by individuals with mental disorders residing in community settings⁹⁾. These issues are likely to arise when individuals with mental disorders continue living in their communities.

The effect of health deterioration on daily life, work, and schooling is particularly significant for individuals living alone or with recuperating parents. These individuals experience difficulties in shopping and housework because of their physical condition. Those raising children experienced anxiety and distress associated with childcare responsibilities, which could lead to fearful negative behaviors, such as expressing anger toward their children when they were unwell.

In addition, there is the significant issue of “difficulty in utilizing public support”. Some participants expressed concerns about the difficulty of establishing trusting relationships with the support staff, who often changed every few years. This may stem from individuals’ tendency to struggle to adapt to new situations, leading to feelings of anxiety and fatigue in their daily lives and work²³⁾.

This study highlighted issues associated with housing that enable patients to continue living in the community, as well as financial problems. Adequate housing is critical for supporting individuals with serious mental illnesses to live successfully in their communities²⁶⁾. In some instances, adequate housing could not be secured in the community, contributing to a reluctance to transition individuals with mental disabilities into community living or to support their continued residence in the community.

Suggestions for building a comprehensive community care system that addresses mental disorders

The participants experienced difficulty in controlling their symptoms and self-managing their medication. For patients to continue living in their communities, they must first control their symptoms, manage their medications, and maintain their health. Approximately 80% of patients hospitalized with mental disorders relapse within five years²⁷⁾. Both clinical and personal recovery should be considered during the treatment and outcome monitoring of patients^{28, 29)}. Clinical recovery includes monitoring symptoms and managing medications, which are important for well-being. Therefore, patients should be encouraged to improve their medication adherence through outpatient visits or nurse visits.

As each person’s physical condition, working style, and motivation for work differ, it is necessary to fully understand each individual’s perspective before formulating an employment support plan. In Japan, employment discrimination against individuals with mental disabilities has been illegal since 2018, and the employment rate of these individuals has been increasing. However, a range of environmental barriers, including issues associated with the service system, entitlement programs, nonhuman resources, and social stigma, have been reported³⁰⁾.

Thus, it is important for workplaces to improve their support systems to accommodate the characteristics of these disabilities, such as monitoring mental and physical conditions and proposing reasonable work content. Related organizations must also collaborate to provide ongoing support. In addition, although discrimination against workers with mental health conditions is illegal, employees with mental illnesses still experience prejudice³¹⁾. Some individuals with mental disabilities choose not to disclose their condition to employers³²⁾. Therefore, providing opportunities outside the workplace to share and alleviate the distress and challenges faced at work is also effective.

As the challenges entailed in continuing to live in the community are diverse, it is necessary for patients, their families, and local health, medical, and welfare workers to collaborate to create a recovery-oriented, community-based comprehensive care system that addresses mental disorders according to the needs of individuals with mental disorders while considering the conditions of the community. Specifically, using the results of this study, it is necessary to engage in dialogue and consideration among individuals with mental disorders, their families, local residents, and professionals to resolve the challenges of community living.

These steps can promote personal recovery and help individuals with mental disorders who have experienced long-term hospitalization without isolation. Slade^{28, 33)} suggested that health workers need new approaches to working with individuals, including incorporating emerging knowledge from recovery and positive psychology into the education and training of all mental health professionals. Professionals should believe in the personal recovery of individuals with mental disorders and continue to support their choices and decisions.

Limitations

This study clarified the perspectives regarding the continuing community lives of individuals with mental disabilities in Japan, with reference to their personal recovery. As this study targeted users of welfare services for people with disabilities in a limited area of Japan, it is possible that the resulting data were biased. Future studies should increase the sample size and clarify the differences in patient symptom severity, area of residence, and the level of support received, all of which affect the ability of individuals with mental disorders to continue living in the community.

Conclusion

This study identified the perspectives of individuals with mental disabilities living in regional Japan and revealed seven themes regarding their future lives from the viewpoint of personal recovery. Additionally, eight themes of issues were faced by individuals with mental disorders who had experienced long-term hospitalization in community living. These issues are wide-ranging and include symptom management, employment, family relationships, social connections, and lack of support. Therefore, professionals must believe in the personal recovery of individuals with mental disorders and persistently support their choices and decisions. Therefore, it is necessary to build a recovery-oriented, comprehensive community care system that can respond to mental disorders according to the needs of community-dwelling patients.

Conflict of interests

The authors declare no conflicts of interest.

Funding information

This study was supported by grants from JSPS KAKENHI [grant numbers 19K11136 and 23K10285].

Approval of the research protocol

This study was approved by the Ethics Committee of Niigata University (approval number: 2020-0436).

Informed consent

Informed consent was obtained from all participants after full disclosure of the aims and procedures of the study.

Consent for publication

All authors reviewed the final version of the manuscript and consented to its submission for publication in the Journal of Rural Medicine.

Author contributions

All authors contributed to the conception and design of the study. T. N. and M. I. acquired the data and performed analyses. T. N., M. S., and RAMSDL.J. drafted the manuscript. T. S. and K. K. critically reviewed the manuscript. All the authors have read and approved the final manuscript.

Data availability statement

Data supporting the findings of this study are available from the corresponding author, Narita Taichi, upon request.