Background. Past research and instrument development in
have focused on specific
aspects of caregiving or specific disability groups. This paper reports
a new generic instrument developed to assess the experience of caregiving,
social and emotional well-being of caregivers and a comparison group of
Methods. Using computer-assisted telephone technology, a random
of 26000 households
was conducted in Victoria, Australia to identify and interview 976 caregivers
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
included life satisfaction, positive and negative affect, social support
overload; and to caregivers,
caring role satisfaction, resentment and anger, and, in relation to the
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
were validated externally by clinician assessments.
Conclusions. A comprehensive instrument to assess the experience
caregiving was developed. It
is relevant to a broad range of ages, levels and types of disability and
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
on two occasions. The instrument is potentially useful in a range of research
and practical settings.