Family caregiving: measurement of emotional well-being and various aspects of the caregiving role

Abstract

Background. Past research and instrument development in caregiving have focused on specific aspects of caregiving or specific disability groups. This paper reports the scale characteristics of a new generic instrument developed to assess the experience of caregiving, and the social and emotional well-being of caregivers and a comparison group of ‘non-caregivers’.

Methods. Using computer-assisted telephone technology, a random survey of 26000 households was conducted in Victoria, Australia to identify and interview 976 caregivers of people who were aged or had a long-term illness or disability of any kind, and 219 non-caregivers. Both groups were re-interviewed after 15 months. Scales administered on each occasion to caregivers and non-caregivers included life satisfaction, positive and negative affect, social support and overload; and to caregivers, caring role satisfaction, resentment and anger, and, in relation to the care recipient, measures of help provided and needed, severity of disability and behaviour problems.

Results. On each occasion and with each sample all scales demonstrated a satisfactory reliability. With a subsample of caregiver–care–recipient dyads (N = 67), caregiver reports of severity of disability, level of helped needed and provided were validated externally by clinician assessments.

Conclusions. A comprehensive instrument to assess the experience of caregiving was developed. It is relevant to a broad range of ages, levels and types of disability and care provided; and, in assessing health and well-being, to both caregivers and non-caregivers. Scales, including both positive and negative dimensions, have demonstrated good internal consistency on two occasions. The instrument is potentially useful in a range of research and practical settings.