Adapting to psychiatric disability and needs for home- and community-based care

The objective of the study was to describe adaptation strategies and use of formal and informal support by individuals with psychiatric disabilities, to delineate remaining needs, and to determine how home- and community-based services might address those needs. Using in-depth interviews and structured questionnaires, we examined functional status, adaptation, and needs for home- and community-based care among 33 severely mentally ill members of a large health maintenance organization. Despite success in community living, participants had significant functional deficits (physical and emotional), relied heavily on only one or two key informal caregivers, and often needed significant support from mental health professionals. Limited numbers of caregivers and social isolation placed participants at risk of negative outcomes if informal support resources were to be lost. Home- and community-based care interventions that attempt to increase informal support networks and provide instrumental help (cooking, cleaning, transport) on short notice during flare-ups could augment existing (but limited) informal caregiving, help severely mentally ill individuals remain independent, and reduce the likelihood that loss of an informal caregiver would result in unwanted outcomes.