Literature Review of Effective Practical Elements in Support for Family Caregivers of People with Mental Illnesses ()
1. Introduction
Mental illness places a long-term psychological, social, and financial burden not only on the patient themselves but also on their family. The cohabiting parent(s), spouse, and sibling(s) may experience strong emotional conflict and challenges in their everyday lifestyle as they have to take on the roles of daily care and decision-making. There is a major long-term impact on family members, and it affects each of their lives [1] [2]. The Comprehensive Mental Health Action Plan 2013-2020, which was adopted in 2013, has been extended until 2030. This indicates interest in local community-based mental health service provision as well as family/caregiver empowerment and treatment. Therefore, it appears that enhancing support for family members is an issue that needs to be tackled [3]. Various issues in the current status of psychiatric care in Japan have been clarified in relation to the medical care system currently in place. These include the high number of hospital beds compared to other OECD countries, and increasingly long average hospital stays. Therefore, a policy of “Shifting from hospitalized medical care to living in local communities” was revealed under the 2004 Mental Health and Medical Welfare Reform Vision. In addition, a “Local community-based care system, also tailored to people with mental illnesses,” was unveiled in 2017 with the aim of enabling people with mental illnesses to live with peace of mind as members of local communities [4]. Many people with mental illness live with their families. This was supported by the finding of a Cabinet Office investigation, indicating that 80% of persons with a mental illness cohabited with someone, most often a family member [5]. As family support is essential in enabling people with mental illnesses to live a stable life in local communities while cohabiting with their family, practices to ensure support for the health of family members need to be put in place. The National Federation of Families for Mental Health and Welfare in Japan, which is composed of families of people with mental illnesses, investigated challenges faced by such families and clarified seven issues, including: no support for when the patient’s condition worsens and no opportunity for consultation or problem-solving at any time when confronted with difficulties [6]. In psychiatric care and local health and welfare, although various evidence-based support models have been proposed for family support such as psychological training, peer activities, and respite services, families are constantly faced with challenges. For family support to be implemented, the necessary practical elements need to be investigated and information on findings and challenges related to implementation needs to be organized.
The objective of this study was to systematically review support for families of people with mental illnesses and outline factors including support purposes, methods, subjects, and results in order to analyze effective practical elements.
2. Methods
2.1. Definition of Terms
In this study, the effective practical components of family support for people with mental illnesses are defined as support elements aimed at improving the quality of life of both the people with mental illnesses and their family caregivers.
2.2. Search Strategy and Eligibility Criteria
The literature search was conducted using MEDLINE and CINAHL, which are major academic databases in the fields of mental health and nursing. The search was limited to manuscripts written in English to ensure consistency in data extraction and interpretation. The search period was from 2015 through 2025 (March 31). We investigated manuscripts published over the past 10 years in order to identify recent trends. Search keywords were “family support,” “family intervention,” or “family nursing,” and “mental illness,” “mental disorders,” and “practice elements,” or “elements of practice,” or “practice.” An AND search was then ultimately performed on the search results for each. After removing overlapping manuscripts, screening was performed on the remaining manuscripts. The selection criteria required that manuscripts describe support for family members of people with mental illnesses and be peer-reviewed. Moreover, the full report had to be available for access. This study exclusively targets publicly available academic literature and does not involve any data that could identify individuals or human subjects; therefore, ethical review was deemed unnecessary. The handling of the selected literature was conducted with careful consideration to avoid copyright infringement, and efforts were made to remain faithful to the original texts.
2.3. Screening and Analysis
Figure 1. Flow diagram for review process.
Overlapping manuscripts (n = 6) were removed from the total number of manuscripts (n = 171) obtained from searches of the two databases. The remaining manuscripts (n = 165) were screened. First, the report title and abstract were screened to confirm whether they met the selection criteria. Then, manuscripts not meeting the selection criteria due to family members not being targeted for analysis, support not being practically implemented, or support details not being clearly outlined were removed. Ultimately, we were left with four manuscripts for analysis. The selection process is shown in a flow chart (Figure 1). The included studies were appraised through discussion among the researchers using five quality criteria adapted from the Critical Appraisal Skills Programme (CASP): clarity of research aims, appropriateness of design, transparency of data collection and analysis, ethical considerations, and validity of findings. The degree of achievement for each criterion was evaluated collaboratively and represented in Table 1 using asterisks (*), where a greater number of asterisks indicates a higher level of achievement. We also compared the content related to family support and analyzed practical elements for supporting families of people with mental illness. Screening, appraisal, and analysis were conducted independently by two researchers to minimize interpretive bias and ensure data reliability and validity through careful review.
3. Results
Based on the selection criteria, four manuscripts were subjected to analysis (see Table 1).
Table 1. Outline of targeted manuscripts.
No. |
Author (Country) |
Year |
Design |
Target of support |
Quality elements
(5 Criteria) |
1 [7] |
Tina Cook, Steven Noone, Megan Thomson (UK) |
2019 |
Action research |
Family carers of adults with learning disability and behaviors |
***** |
2 [8] |
Loraine Visscher, Sijmen A. Reijneveld, Jana Knot-Dickscheit, Tom A van Yperen, Ron H J Scholte, Marc J M H Delsing, K Els Evenboer, Danielle E M C Jansen (Netherlands) |
2021 |
Quasi-experimental research |
Families with multiple problems (FMPs) |
***** |
3 [9] |
Lisbeth Kjelsrud Aass, Hege
Skundberg-Kletthagen, Agneta Schrøder, Øyfrid Larsen Moen (Norway) |
2020 |
An explorative qualitative design with a phenomenographic approach |
Young adults living with mental illness and their families |
***** |
4 [10] |
Ernesto Baena, Cristina Abelleira, Mónica García, José A Sánchez, Fátima C Quintana, Sofía A Díaz, María C Martel, Jaime A Fernández, Alba Giráldez, Natalia Benítez (Spain) |
2023 |
Practical report |
Family members of people affected by severe mental disorders (SMD) |
*** |
The objectives, methods, and results of the targeted reports were sorted, and clarified findings were comparatively investigated (Table 2).
As a result, the current state of support for family caregivers of people with mental illnesses and four effective practical elements was organized.
Table 2. Practical objectives, methods and results of targeted manuscripts.
No. |
Aim |
Participants |
Methods/ content of the practice |
Outcome |
1 |
To understand the basis for a successful course that supported the capabilities and resilience of family members in long-term caring roles, using a participatory health research (PHR) approach with family carers and professionals. |
18 Family carers, 3 Facilitators, 2 Academic Researchers |
The research was guided by the principles of PHR. Central to the research were reflexive onversations (communicative spaces) where diverse findings were shared and critiqued. The underpinning design for the re-search was a series of three courses consisting of five sessions of Mindfulness/acceptance and commitment therapy (ACT). Reflective discussion was conducted before the course, during the course, and after completion of the course. Effective elements were analyzed based on data, and findings were leveraged in the course. This created the basis for an action research cycle where everyone involved, shaped both the design and content of the course, generated data, and made meaning from that data. |
The action research process resulted in modification of family carers’ behavior, clarifying that the PHR approach impacted course content and processes. 14 out of 18 family carers reported making changes to their own behavior that improved their mental and physical health during or after the course, and associated improvements in family life. Mindfulness practices such as mindful walking, or mindful eating, that did not need a special time or place, meant that family carers could, and did, practice them. The process of shared recursive reflections enabled people to see things differently and find their own ways of acting. The PHR approach enabled program content that was based not on specialists, but on participation evaluation and needs. This approach helped specialists to realize the importance of not taking the lead in support based on their values as a specialist. |
2 |
To assess the degree to which practice and program elements contribute to the effectiveness of interventions for FMPs in general and for subgroups with child and/or parental psychiatric problems, intellectual disabilities, or substance use. |
473 families |
A quasi-experimental study was performed, adjusting for differences in prognosis between FMPs using propensity scores (PS) or quasi-randomization. Data was collected by using questionnaires that were filled in by practitioners (child and youth care social workers, family coaches, and/or therapists) at the beginning and the end of the intervention. In addition, every 4 weeks during the intervention period, practitioners registered the elements which they provided to families. Self-report questionnaires were used for caregivers who received intervention to measure primary (child’s internalizing and externalizing problems) and secondary (parental stress and social contacts) outcomes at the beginning, end, and three months thereafter. By means of Latent Profile Analysis, groups of families receiving similar combinations of practice elements were identified, and propensity scores were calculated. How practice element profiles and program elements affected improvement in outcomes, and whether these effects were moderated by subgroup were assessed. |
At 26 child and adolescent social care organizations, eight FMPs that had already undergone intervention confirmed to be reasonably effective were targeted for analysis. Differences in intervention for the eight families did not impact child outcomes. However, there was a large number of phone calls regarding visiting care problems and effects were enhanced by more frequent contact. |
3 |
To explore and evaluate how young adults living with mental illness and their families experienced a family intervention called FCSC. |
19 family members from seven families |
(FCSC): theoretically grounded in Wright and Leahey’s Calgary Family Assessment Model (CFAM) and Calgary Family Intervention Model (CFIM) which are strengths-oriented family nursing assessment and intervention models for families living with illness.FCSC intervention was composed of three sessions:1) Each family member was invited to relate their narrative about their experiences and beliefs in relation to everyday life. 2) The focus of the second session was on cognitive, affective, behavioral domains of family functioning, and strengths and resources within and outside the family. 3) The focus of the third session was on families’ experience of everyday life and support strategies for the future. Family members who participated in FCSC intervention were interviewed and the results were analyzed. |
Out of the 19 family members, 17 consented to participate in family research interviews.Mental illness among the young adults ranged from depression and anxiety distress or disorders, personality disorders, ADHD, and eating disorders.The findings describe the families’ experiences of FCSC under two descriptive categories, “Facilitating sharing reflections on everyday life” and “Possibility of change in everyday life.” The descriptive categories embody five concepts, The unfamiliar conversations, A team with mutual understanding, Experiencing a change in the patient approach. Awareness of strengths and resources, Support in everyday life on regular basis. |
4 |
To present a new online Intervention format aimed at relatives of people with Severe Mental Disorder |
Seven families and a total of 10 family members |
Through seven phases, new format construction, establishment of content and methods through collaboration with families, online group session preparation, implementation, and evaluation were performed. Multifamily intervention (MFI) was performed by implementing 16 sessions over 1 year, with each session performed online and lasting 60 minutes. There were 242 audiovisual support materials prepared. The sessions included role plays, video viewing and subsequent group discussion, experiential exercises, muscle relaxation practice, mindfulness practices, discussion of coping strategies and subsequent sharing, group discussion following readings of content by family members, and modelling with dramatizations carried out by professional drivers. |
The participants were surveyed regarding S-CGQoL (caregiver quality of life) and CD-RISC (resilience scale) before and after the program and also responded to a satisfaction survey with a five-level scale after the program was completed. The incorporation of relatives to the process of constructing the new intervention format has allowed for the adaptation of the format to the criteria and needs identified by the relatives themselves, with no dropouts. The incorporation of family members has favored their greater collaboration and involvement as co-authors of the new format, and contributed to the acceptability and satisfaction with the subsequent intervention. |
3.1. Importance of Opportunities for Dialogue
The methodological discussion on participatory health research in manuscript 1 focused on dialogue between supporters and family members, and between family members themselves. Family members discussed among themselves their thoughts and feelings on participating in the program, in which safety was assured. This not only clarified participants’ needs for the program through free dialogue, but also revealed new methods of coping with the behavior of the person with mental illness. In manuscript 3, the person with mental illness and their family participated in Family-Centered Support Conversations together. By reflecting on their daily lifestyle, mutual understanding was deepened among the person with mental illness, their family, and specialists. In manuscript 4, families were included in the construction process of a new intervention format. Family members’ opinions and needs were investigated, and the results were then given as feedback to family members. A new format was constructed through this process, which appeared to contribute to acceptance of intervention and high satisfaction.
3.2. Importance of Continuous Connection with Supporters
Manuscripts 1 and 2 indicated the importance of continuous connection with supporters, and family members being able to utilize such support at any time. The results of manuscript 2 indicated that differences in care content did not impact effects. Manuscript 3 stated that when family members who had nobody to consult with were able to come into contact with a specialist, this was a good experience. Manuscript 4 revealed that family members exhibited high satisfaction when sessions were held flexibly in line with their needs, and they could easily access online sessions. In addition, offering long-term, continuous support for family members forms the basis for new challenges and appears to contribute to continuous experiences for families and supporters.
3.3. Understanding and Supporting the Challenges of Caring for People with Mental Illness
Manuscript 1 revealed that some family members were unable to participate in the research process continuously due to the state of their family member’s mental illness. Manuscript 2 described how family caregivers coped with the problematic behavior of the person with a mental illness and revealed that their health and lifestyle were greatly impacted by the state of their family member’s mental illness. Manuscript 1 discussed methods of response to the person with a mental illness. Manuscript 3 revealed that the person with a mental illness was able to talk about things that they had not discussed with their family members, but only with a specialist at the sessions, indicating that these sessions aided their self-disclosure. This gave family members an opportunity to more deeply understand how the person with a mental illness experienced their illness and symptoms, resulting in changes to family dynamics. Results indicated the need for caregiving family members to receive support in order to help family members themselves maintain social activities, including mental and physical health as well as family relationships, while remembering that these elements will be affected by the recovery of the person with a mental illness.
3.4. Support Should Not Be Specialist-Led
Manuscript 1 revealed a completely different process from that which was first conceived by specialists as a result of program revisions based on discussions with family members. Action research encouraged specialists to focus on taking a stance of not forcing their values as specialists. Manuscript 3 emphasized a non-hierarchical treatment relationship as the basis for dialogue sessions.
4. Discussion
4.1. Lack of Studies Regarding Support for Family Members of People with Mental Illnesses
There are relatively few manuscripts available on support for family members of people with mental illnesses compared to reports related to other mental healthcare fields. This also appears to be greatly affected by major differences observed in support systems offered by various countries worldwide. The targeted manuscripts revealed that in countries where care for families is widespread, efforts were being made to further improve implementation rates, various intervention programs were being implemented, and more effective implementation methods were being investigated. Depending on regional characteristics, the dissemination of online care for families was being investigated. In countries where care for families was not sufficiently widespread, in addition to introducing intervention programs, there is a need to make adjustments in accordance with mental health systems, environment, and culture so that such care can become widely used, and to increase practical implementation. The applicability of the practical elements identified in this study may vary depending on national systems and cultural backgrounds. For example, in countries such as the UK and Norway, where community-based mental health care and family involvement are institutionally established, opportunities for dialogue and participatory approaches can be implemented relatively easily. In contrast, in countries like Japan, where psychiatric care remains hospital-centered, structural and policy-level changes are required to realize continuous connections with supporters and non-specialist-led support. However, even in contexts where institutional systems are underdeveloped, these practical elements may still be flexibly integrated. For instance, by utilizing existing primary care resources and incorporating brief consultations, it is possible to build support systems that prevent caregiver isolation and ensure access to assistance.
Therefore, when applying these practical elements, it is essential to appropriately adapt them to the local mental health system, available resources, and cultural background.
4.2. The Importance of Creating Opportunities for Dialogue, Taking into Consideration Situations That Make It Difficult for Family Caregivers to Talk about Their Situation
The results of our investigation of the literature revealed that dialogue between supporters and family members, and amongst family members themselves, as well as support for families that emphasized dialogue within families, was useful. The family caregivers of people with mental illnesses often put their own lifestyle and health needs last, as they earnestly hope that their family member will recover. This is because, in addition to being family, they are now a caregiver who has to shoulder the burden of a diverse range of physical, psychological, and social roles [11] [12]. Furthermore, social prejudice regarding people with mental illnesses is targeted not only at the person themselves, but also at their families, causing them to repeatedly experience hurt feelings. As situations such as these continue over the long term, these family members experience increased exhaustion and isolation [13]. In this context, it is only natural that such family members would hesitate to talk about their experiences, and it is likely that they would have very few opportunities to engage in such dialogue. In medical and welfare settings, family caregivers also need to act as a cooperator for treatment of their family member who has a mental illness. They have limited opportunities to talk about their challenges and conflicts and have to take on a supporter’s role in the treatment of their ill family member. More interest needs to be shown toward situations that make it difficult for family caregivers to engage in dialogue. Opportunities need to be created to enable family caregivers to engage in dialogue soon after treatment is started and to make connections with each other.
4.3. Supporting Family Caregivers While Also Supporting the Recovery of the Families Themselves
The seriousness of the disease of the person with a mental illness and their problematic behavior can greatly affect the lifestyle of family caregivers. There is a major impact on family caregivers’ social life, which can make it difficult for them to continuously participate in support programs. When treating and responding to people with mental illness, it is essential to understand that family members play a role as caregivers, and to consider how to support the family caregivers of people with mental illnesses. Focusing on supporting family recovery, aiming to improve family members’ health and quality of life, is also an essential element of family support.
4.4. Modifying the Stance of Specialists in Providing Support
The process by which family members discuss their own experiences and feelings is also a very important experience for specialists, as it altered their mutual relationships and care practices. Supporters deepened their understanding by listening to the opinions and dialogues of family members, which enabled them to provide more comprehensive and flexible care. The quality of support was improved by shifting from a conventional unidirectional care stance to a cooperative relationship with deepened mutual understanding. To do that, partnerships should be built on an equal basis among the person with mental illness, family members, and specialists. When implementing support for the family members of people with mental illnesses, specialists need to take a stance of discussing and collaborating with the parties involved in order to construct support strategies.
5. Limitations
This study has several limitations. First, only four manuscripts were included, which limits the generalizability of the findings. Detailed analysis regarding the classification and severity of mental disorders, as well as the roles and perspectives of family members, was not conducted. Furthermore, the literature search was limited to English-language manuscripts indexed in MEDLINE and CINAHL, which may have led to the omission of relevant studies in other databases and introduced language bias. In addition, the possibility of publication bias cannot be ruled out. Since no relevant manuscripts on practices within Japan were identified, future research should include a review of studies published in Japanese domestic journals.
6. Conclusion
Our review of the literature regarding support for family caregivers of people with mental illnesses revealed several elements for effective implementation. These were opportunities for dialogue, continuous connection with supporters, conducting support in collaboration with people with mental illnesses, and not implementing specialist-led support. Results suggested the importance of creating opportunities for safe dialogue in which family members could autonomously voice their opinions and incorporate the opinions of others, constructing supportive relationships that were not specialist-led, and modifying the stance of specialists offering support to facilitate relationships with supporters, in which family members felt that they could continuously access support at any time.