The nature of sense making in caregiving for persons with multiple sclerosis

Disabil Rehabil. 2008;30(17):1263-73. doi: 10.1080/09638280701610320.

Abstract

Objective: Sense making refers to the development of explanations for adversity. This study investigated the nature of sense making in multiple sclerosis (MS) carers and relations between it and care recipient illness, caregiving context, carer religious-spiritual beliefs and carer and care recipient adjustment.

Subjects: A total of 232 MS carers and their care recipients completed questionnaires.

Method: A questionnaire survey methodology was used to collect qualitative and quantitative data. Variables included: Demographics, caregiving context (caregiving duration, co-residency, carer-care recipient relationship, outside employment), care recipient illness (activities of daily living, number of symptoms, illness duration, course), sense making (anticipated sense making, number of sense making categories), carer and care recipient adjustment (positive states of mind, life satisfaction, anxiety, depression).

Results: Half the carers generated sense making explanations for their caregiving situation and 12 sense making themes emerged from this qualitative data. Over a third of those carers who could not make sense of their situation were able to anticipate comprehending it and the strength of this anticipation was related to greater life satisfaction. Carer sense making was related to having a religious-spiritual belief, fewer care recipient symptoms, marital status and it predicted life satisfaction after controlling for relevant covariates. Carer and care recipient sense making was positively correlated, and the sense making of one partner was positively related to life satisfaction of the other partner.

Conclusions: Findings chart the nature of sense making in MS caregiving and support the notion of collective sense making within dyads and the proposed beneficial links between sense making and adjustment.

MeSH terms

  • Adaptation, Psychological*
  • Adolescent
  • Adult
  • Aged
  • Aged, 80 and over
  • Caregivers / psychology*
  • Educational Status
  • Female
  • Humans
  • Male
  • Middle Aged
  • Multiple Sclerosis / classification
  • Multiple Sclerosis / physiopathology*
  • Personal Satisfaction
  • Severity of Illness Index
  • Surveys and Questionnaires
  • Young Adult