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.