Involvement in the Shadows: A Qualitative Interview Study on Informal Caregiver Involvement in the Formal Care Trajectories of Individuals Living with Severe Mental Health Problems

Community Ment Health J. 2026 May 4. doi: 10.1007/s10597-026-01652-3. Online ahead of print.

ABSTRACT

Informal caregivers play a crucial and continuous role in supporting individuals living with severe mental health problems, hereinafter referred to as supported individual, yet their involvement in formal care remains poorly understood. While existing research has often focused on professional perspectives or institutional barriers, the lived experiences of caregivers, how they perceive and negotiate their roles and shifts in involvement with formal care, have received limited attention. This qualitative study addresses these research gaps by investigating how twenty informal caregivers experienced their involvement in the formal care trajectories of individuals living with severe mental health problems across different care settings in the Netherlands. Through in-depth interviews, we identified three archetypes of caregiver involvement with formal care: the Active Partner, the Formalized Caregiver, and the Disconnected Caregiver. These archetypes represent different degrees and qualities of caregiver involvement and show how caregivers move between roles over time, influenced by interpersonal relationships, professional attitudes, legal constraints, and systemic challenges. Rather than being fixed, caregiver involvement is shown to be a dynamic, negotiated process shaped by all members of the care triad, the supported individual, the professional, and the caregiver, as well as the broader care system. The study highlights how caregivers who occupy the role of the Formalized Caregiver often assume significant responsibilities without adequate recognition or support, while those positioned as the Disconnected Caregiver is excluded from the formal care trajectory or unable to participate in ways that align with their own wishes and capacities. However, if relationships within the care triad are characterized by trust, open communication, and mutual respect, caregivers can assume the role of Active Partner. By drawing on caregivers’ lived experiences, this study offers a nuanced and empirically grounded understanding of caregiver involvement in practice, providing new insights for the development of more inclusive and supportive care systems for caregivers and ultimately the individuals they support.

PMID:42082891 | DOI:10.1007/s10597-026-01652-3