The impact on the family of long-term caregiving in the home

Families provide care in ever-increasing numbers for chronically and terminally ill family members. Previous empirical measurement of caregiver strain was generally limited to one type of care recipient population (e.g., elderly), with samples drawn primarily from metropolitan centers (and often support groups), and confined to individual assessment (i.e., primary caregiver), with outcomes of depression and anxiety. This study sought to address some of the research gaps in previous research. In-depth caregiver and family-member interviews using both quantitative and qualitative research methods were conducted during a 10-month period throughout an entire state, composed mostly of rural and small-town populations. Examination was directed at (1) how family caregiving affects caregiver and family member feelings about self and social integration; (2) how social support and coping moderate caregiver feelings of self and social integration; and (3) the impact of family caregiving on the social interaction within the family unit. Caregivers represented all age groups, and cared for relatives with a wide variety of Illnesses. Factor analysis, multiple regression, hierarchical regressions, and conditional effect plots were used to test relationships. Findings confirmed that while caregiving is primarily provided by females, males provided about 15% of family care. Families provide much more extensive care than was previously reported: a mean of seven years and 12 hours of care per day. Family opposition was the most detrimental stressor; it negatively affected caregivers\u27 self-concept and increased their feelings of alienation. In the presence of identified stressors, social support from other family members operated primarily through a main effect on caregiver self-concept and alienation, while support from friends operated primarily through a buffering effect. Coping resources had stronger buffering than main effects, and were most influential in lowering the level of caregiver alienation. Alienation was shown to have a significant negative effect on perception of family cohesion and a positive effect on family conflict; self-concept showed no effect on perception of family interaction. Family members of primary caregivers who experienced alienation had, themselves, more alienation, but their perception of family cohesion and conflict was not significantly affected. Being a spouse, or living in the same household as the caregiver, increased the sense of family conflict and decreased the sense of family cohesion