Perceptions, attitudes and experiences of family caregivers of patients with musculoskeletal diseases: a qualitative approach

Reumatol Clin. 2013 Nov-Dec;9(6):334-9. doi: 10.1016/j.reuma.2013.04.014. Epub 2013 Jul 17.
[Article in English, Spanish]

Abstract

Objective: To determine the perceptions, attitudes and experiences among family caregivers of patients with musculoskeletal diseases (MSD).

Methods: Descriptive, exploratory, qualitative study. Two discussion groups were organized with family caregivers of MSD patients, representing the caregiver profile: gender (men/women) and age (31-45 years/46-65 years); and patient profiles: MSD type (rheumatoid arthritis/ankylosing spondylitis), work status (yes or no for the variables housewife, at least 3 episodes of sick leave, patients who abandoned their work, and patients with permanent work disability). A content analysis based on the Grounded Theory was done to detect and explore emerging categories.

Results: The emerging dimensions were: alterations in daily life activities, need for caregiver support, physical and psychological impact on the caregiver, characteristics of the patient, and several aspects of care. Relevant experiences mentioned were: the diagnosis of a MSD changes the patient and their family members' life affecting work, financial, social, psychological and physical spheres, making it necessary help for basic activities of daily living. Early age at onset or severe MSDs require dedication and effort on the part of caregivers which increases with time. This leads to a great emotional overload on the caregivers, which may be modulated by the support they receive when providing care.

Conclusion: The primary consequences for caregivers are loss of purchasing power, work problems, social isolation and emotional stress. Programs for effective at-home support need to be developed with streamlined administrative processes to quickly classify the level of disability and provide official assistance.

Keywords: Cuidado informal; Cuidadores familiares; Enfermedades músculo-esqueléticas; Family caregivers; Informal care; Investigación cualitativa; Musculoskeletal diseases; Qualitative research.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adult
  • Aged
  • Attitude to Health*
  • Caregivers / psychology*
  • Female
  • Humans
  • Male
  • Middle Aged
  • Musculoskeletal Diseases*
  • Qualitative Research