Loneliness in the presence of others: A mixed-method study of social networks of caregivers of patients with severe mental disorders

Abstract

Background: One in four families has at least one member with a mental disorder and families are the main caregivers in most patients in low and middle-income countries. Caregivers experience disruption in their routine lives, increased responsibilities, increased need for support, and changes in their network. The role of personal support networks in the health and burden of the caregivers is complex and depends on the context, cultural and socioeconomical variables. In this study, we aimed to investigate the personal support network of caregivers of patients with severe mental illness in Iran. Methods: By using a mixed-methods design, we focused on the structure and composition of caregiver networks, as well as self-perceived caregiver support. Results: We found that the support network of caregivers was mostly composed of immediate family members whom themselves were selectively chosen as a result of the multidimensional process of interaction between stigma, availability, and the perceived needs of caregivers. The participants mentioned economic and instrumental supports more frequently than emotional support, probably reflecting their unmet basic needs. Advocacy for providing formal systemic supports to caregivers, as well as interventions that expand caregivers personal support network is recommended. Conclusions: Most participants of the study were relatively isolated and had a small network of support, mostly composed of immediate family members. Stigma was a serious source of family distress for caregivers and a limiting factor in social relationships.