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.