Experiences of Being Cared-For: The Perspective of an Expert-by-Experience in Mental Health

Abstract

It is difficult to understand what it feels like for people with mental ill-health to be cared-for and supported by family members; this experience is often little-explored. Narratives about caring have been increasingly written alongside first-person accounts of recovery, however, there is a dearth of literature written to gain the perspective of being cared-for because of mental distress. Thus, using autoethnography, I present three critical incidents occurring at different points in my recovery to enable exploration of experiences of being cared-for. Firstly, a critical incident at the point of acute unwellness is introduced, secondly an incident during a consultation with a health professional is highlighted, and finally a moment of transition when embarking on an independent life with my husband-to-be is described. I use autoethnography to connect “the autobiographical and personal to the cultural, social, and political”. I consider how the identity of a carer is continually negotiated in a relationship with the service user in both the “private” and the “public” worlds during recovery. I reflect on how professionals can support both service users and carers in a triangle of care, by providing information and support, alongside promoting the development of independence and agency for the service user whilst in the caring relationship. Finally, I introduce a service model which promotes a family network approach to empower the service user, and highlight training programs on recovery that enable carers. I conclude by suggesting the potential of both approaches to support carers to promote the recovery of the service user.

The Lived Experiences of Family Members and Carers of People with Psychosis: A Bottom-Up Review Co-Written by Experts by Experience and Academics

“…Understanding the lived experience of psychosis and recovery in service users demands an equal understanding of the lived experiences of carers and their needs. The literature is scarce on service users’ lived experience narratives of being cared for by carers [ 114 ]. However, it would seem helpful as part of future initiatives to triangulate carer first-hand accounts with service user lived experience accounts of having psychosis and of being cared for to build a more comprehensive and nuanced understanding of the caregiving environment.…”

Caregiving in the COVID‐19 pandemic: Family adaptations following an intensive care unit hospitalisation

“…Czekanski (2017) noted that shifting role changes from relative (e.g., spouse or child) to caregiver is often complicated by the uncertainty of what the future might bring and may lead to feelings of grief and loss. Relatedly, Fox (2022), who describes their mental illness recovery journey within an autoethnography, discusses the identity crises that occurs as the patient/caregiver dyad negotiates and renegotiates their public (caregiving/receiving) relationship and private (familial) one. Inattention to the changing needs of either party can affect both individual and family unit functioning.…”

Experiences of Domestic Violence and Disability

“…Personal accounts can, however, highlight important issues. For example, Fox [28] reflects on their own experience of being cared for to highlight the manner in which care can become 'over-protective and intrusive'. Morris [29] also focuses on experiences of being cared for, highlighting the extent to which paying for assistance can reduce dependence on partners or family members and barriers to leaving an abusive relationship such as the need for accessible housing.…”