Changes in Families’ Caregiving Experiences through Involvement as Participants then Facilitators in a Family Peer‐Education Program for Mental Disorders in Japan

Abstract

A family peer-education program for mental disorders was developed in Japan, similar to existing programs in the United States and Hong Kong. Families that serve as facilitators in such programs may enhance their caregiving processes and, thereby, their well-being. This study's aim was to describe how families' caregiving experiences change, beginning with the onset of a family member's mental illness, through their involvement in a family group or peer-education program as participants then facilitators. Thus, this study was conducted in a family peer-education program for mental disorders in Japan. Group interviews were conducted with 27 facilitators from seven program sites about their experiences before, during, and after becoming facilitators. Interview data were coded and categorized into five stages of caregiving processes: (1) withdrawing and suppressing negative experiences with difficulty and regret; (2) finding comfort through being listened to about negative experiences; (3) supporting participants' sharing as facilitators; (4) understanding and affirming oneself through repeated sharing of experiences; and (5) finding value and social roles in one's experiences. The third, fourth, and fifth stages were experienced by the facilitators. The value that the facilitators placed on their caregiving experiences changed from negative to positive, which participants regarded as helpful and supportive. We conclude that serving as facilitators may improve families' caregiving processes.

Validity and reliability of the Family Empowerment Scale for caregivers of adults with mental health issues

“…One of the traditional goals among family caregivers is expressed emotion (EE), which is important for their ill relatives because high EE can cause relapse (Amaresha & Venkatasubramanian 2012). However, empowerment focused on family caregiver themselves has emerged as a new goal of family interventions, and includes not only communication with the person and management of day-to-day situations but also finding social roles through interactions with other family caregivers and participation in advocacy (Kageyama et al 2015a). For example, the goal of a Japanese family psychoeducation programme is empowerment of family caregivers as well as relapse prevention of persons with mental health issues (Fukui 2011), and the goal of a family peer education programme developed in 2007 is also empowerment of family caregivers (Kageyama et al 2015a).…”

A Systematic Mapping Review of Family Perspectives About Received Mental Health Interventions

“…This reflects the growth in recognition of the association between coproduction and the development of mental health services that have “positive outcomes related to well-being, social connectedness, stigma, inclusion, personal competencies, and skills, with a positive social return on investment” (Pocobello et al, 2020, p. 461). These initiatives include carer designed and led education and support interventions (Bademli & Duman, 2016; Dixon et al, 2011; Foster, 2011; Fox et al, 2015; Kageyama et al, 2017; Levasseur et al, 2019; Perlick et al, 2011; Shor & Birnbaum, 2012; Toohey et al, 2016). The benefits received by family carers through mutual support groups and receiving support from peers have long been recognized (Chien & Norman, 2009).…”

“…Having a carer peer leader provided a sense of optimism and hope for the future through participants witnessing positive journeys of lived experience (Fox et al, 2015; Levasseur et al, 2019). Besides the strongly endorsed benefits for the participants of carer peer-led interventions, the carer peer leaders also experienced growth in their self-assurance and capability (Kageyama et al, 2017). Best practice in establishing the carer voice in moving forward is through active engagement of carers especially in early phases of design and implementation such as in the studies of Kaselionyte et al (2016), Lowenstein et al (2010), Marston et al (2014), Sin et al (2014), and Watts and Hodgson (2015).…”

An Evaluation of Family-Based Treatment for OCD in Japan: A Pilot Randomized Controlled Trial

“…Such a team approach may be effective in the treatment of OCD. "Japanese families often describe caring for their mentally ill family members as a 'lonely battle'" (47). The stigma of mental illness in Japan may lead to such isolation outside the home (48).…”