Factors relating to carer burden for families of persons with muscular dystrophy

J Rehabil Med. 2006 Sep;38(5):309-15. doi: 10.1080/16501970600731578.


Objective: To assess the burden on family carers of persons with muscular dystrophy living in their homes and to determine factors contributing to carer burden.

Methods: The study included 56 dyads of people with muscular dystrophy and their family carers. The variables for carer burden were compared by logistic regression in 2 carer groups (burden + /burden-).

Results: The mean age of the patients with muscular dystrophy was 32.7 years (median 26.7, range 15-65 years) and that of the carers 51 years (median 48, range 30-80 years). The carers reported the care burden using the Zarit Burden Inventory (median score 23, range 0-57/88). Multivariate analysis produced 3 adjusted explicative factors: carer characteristics related to risk of perceived burden are self-report of poor social functioning on the SF-36 (OR = 26.6 (2.6-278); p=0.006), self report of anxiety on the Hospital Anxiety Scale (OR = 7.1 (1.4-36); p=0.02) and being a carer under 48 years of age (OR = 7.8 (1.7-34.5); p=0.007). However, it was difficult to dissociate the different health variables of the carers from each other.

Conclusion: This approach should lead to better decision-making by medical teams, patients and their carers.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Activities of Daily Living
  • Adolescent
  • Adult
  • Aged
  • Aged, 80 and over
  • Caregivers / psychology*
  • Cost of Illness*
  • Decision Making
  • Disabled Persons / psychology*
  • Family / psychology*
  • Follow-Up Studies
  • Home Nursing
  • Humans
  • Middle Aged
  • Muscular Dystrophies / diagnosis
  • Muscular Dystrophies / nursing
  • Muscular Dystrophies / psychology*
  • Quality of Life
  • Surveys and Questionnaires