Burden, attitudes and social support in the families of patients with long-term physical diseases

Abstract

SummaryAims – To describe in a sample of 646 relatives of patients with physical long-term illnesses: a) the relatives' burden of care; b) the relatives' attitudes towards the patients; c) the social and professional support received by the families. Methods – The study has been carried out in 30 Italian geographic areas randomly selected taking into account geographic location and population density. The sample has been consecutively recruited in 139 specialised units for the treatment of chronic heart, brain, diabetes, kidney, and lung diseases. Family burden was evaluated in relation to: a) family's socio-demographic variables and patients' clinical variables; b) relatives' attitudes toward the patient; c) social and professional support; d) geographic area and population density. Outcome measures – Family Problems Questionnaire, physical illness version (QPF-O) and Social Network Questionnaire (QRS). Results – The consequences of caregiving most frequently reported were constraints in social and recreational activities, and feelings of loss. Burden was more marked in relatives of patients with higher physical disabilities, with neurological illnesses, and in relatives with lower support by their social network. Conclusions – These data highlight the need to provide psychological and practical support to caregivers of patients with long-term physical diseases on the basis of the evaluation of their needs for care.Declaration of Interest: none of the five authors has had any interest or received any form of support, including that from drug companies and honoraria for lectures and consultancies, potentially in conflict with this scientific work, in the last 2 years.