Palliative & Supportive Care

Social aspects of caregiving for people living with motor neurone disease: Their relationships to carer well-being

ANTHONY  LOVE  B.A. (Hons), M.A. (Clin Psych), Ph.D. a1 c1 , ANNETTE  STREET  B.Ed. (Hons), Ph.D. a2 , ROBIN  RAY  B.Ed., M. Health Sci. a2 , ROD  HARRIS  B.A. (Soc. Sci.), Grad Dip Health Admin. a3 and ROGER  LOWE  B.Sc. (Hons), B.N., Ph.D. a2
a1 School of Psychological Sciences, La Trobe University, Bendigo, Australia
a2 School of Nursing & Midwifery, La Trobe University, Melbourne, Australia
a3 MND Association of Victoria, Victoria, Australia

Article author query
love a   [PubMed][Google Scholar] 
street a   [PubMed][Google Scholar] 
ray r   [PubMed][Google Scholar] 
harris r   [PubMed][Google Scholar] 
lowe r   [PubMed][Google Scholar] 


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 recommended.

(Received November 29 2004)
(Accepted December 20 2004)

Key Words: Social support; Caregiver well-being; Long-term caregiving; Motor neurone disease.

c1 Corresponding author: Anthony Love, School of Psychological Sciences, La Trobe University, Bendigo 3550, Australia. E-mail: