Objective: To investigate social aspects of caregiving for
people living with motor neurone disease (MND) and examine their
relationships to carers' well-being.
Methods: A questionnaire was developed to assess carers'
perceptions of their social support network (the Caregiver Network Scale,
CNS), including measures of sociodemographic status and general well-being
(GHQ-12), and mailed to carers of people living with MND.
Results: Seventy-five surveys were returned (response rate:
33%). In univariate analyses, relationships between well-being and carer
age, time as caregiver, and four subscales of the CNS were found to be
significant. However, multivariate analyses combining their effects
revealed that stress on carer social networks was the best single
contributor to predictions of carer well-being.
Significance of results: Results indicate that prolonged
caring for others living with MND has substantial costs for the carer in
terms of loss of social support, which affects carer well-being and
impacts ultimately on those living with MND. The CNS offers promise as a
measure for screening at-risk carers; those who are distressed become
candidates for professional intervention to help them cope better. Further
research, providing validation of the scale for this task, is