Empowerment for Caregiving Families Impacted By Mental Illness: Recommendations from Caregivers and People Diagnosed with Mental Illness

Background and Purpose: Research shows that 2-3% of the adult population are providing informal support to a loved one with long-term mental health concerns (Lavoie, 2018). Mental health care systems have long wait times for services and caregivers report they are not involved adequately in service provision for their own relatives. Research has explored caregiving experiences but has rarely included the perspective of the diagnosed individuals receiving care as well as caregivers (Lavoie, 2018; Olasoji et al., 2017). The purpose of this study is to address this gap by including the perspectives of both caregivers and care receivers in caregiving families to explore family-centered perspectives on navigating mental illness and mental health care systems.

Methods: In collaboration with community mental health agencies in Ontario, we recruited participants through social media and online service networks for a cross sectional online survey. To be eligible for the study, participants needed to have a diagnosis of mental illness, and/or be a person who identified as a caregiver or other person involved with a caregiving family with perspectives on family experiences with mental illness. The survey contained seven open-ended questions related to challenges experienced by families, factors that supported caregiving, and recommendations that could enhance the caregiving experience. The written responses were analyzed using thematic analysis. Trustworthiness and rigor of the analysis were strengthened through continuous team engagement, double-coding, and team debriefing.

Results: The sample included 102 participants from across Ontario mostly identifying as women (72.5%; 15.7% men, 1% transgender, 10.8% no response) and White (62.7%; 6.9% as Indigenous or racial minority, 30.4% provided no response). 13.3% of the sample identified as persons diagnosed with mental illness and 85.9% identified as family members or others; many identified in both categories. Most participants resided in large cities (72.6%) and 48% were between 46-65 years of age. Empowerment was a consistent theme across responses, with both diagnosed individuals and caregivers recommending interventions that enhance agency, dignity, and support for caring within families. On a system level, participants recommended increased funding, designing family inclusive workplace supports, and education to reduce mental health stigma. In services, they recommended including families in circles of care, family-centered care planning, better coordination of services and supports, and more accessible crisis interventions. Finally, within family systems, participants asserted the importance of facilitating positive relationships within and beyond the family and promoting self-care and boundaries for all family members.

Conclusions and Implications: This study expands our understanding of caregiving experiences in families affected by mental illness and their desires for empowerment and support within service systems. The participants’ recommendations suggest useful enhancements to social work practice with families and within services, and points of advocacy within healthcare systems.