Factors related to the impact of chronically disabled children on their families

Pediatr Neurol. 2014 Mar;50(3):255-61. doi: 10.1016/j.pediatrneurol.2013.11.012. Epub 2013 Nov 20.

Abstract

Background: This study to investigated the effects of chronically disabled children (CDC) on their families.

Method: The study included 655 CDD and their families from 45 cities located in Turkey representing the seven regions of the country. Sociodemographic characteristics, presence of mental retardation, primary care-giver, presence of social insurance, the number of other children and other family members living in the family, duration of the disorder, disabling conditions in the other children, time spent for care giving, and level of income were recorded. WeeFIM (Functional Independence for Children) and Impact on Family Scale (IPFAM) were administered to evaluate the level of functional independence and the overall burden on the families, respectively.

Results: IPFAM and WeeFIM scores were not different between geographical regions (P > 0.05). Functional independence level of the child and the level of education of the mothers were significant contributors to the disruption of social relations subscale of IPFAM (P < 0.05). WeeFIM score, presence of mental retardation, and income were significant contributors to general impact subscale. WeeFIM, mothers' level of education, and income were significant factors for the financial support subscale (P < 0.05). WeeFIM score, presence of mental retardation, mothers' level of education, and income also were found to contribute to the total impact subscale scores (P < 0.05). None of the evaluated factors were found to contribute to coping subscale of IPFAM (P > 0.05).

Conclusion: Although some are expected, certain intriguing results, such as the impact of the mothers' literacy level, warrant further larger scale comprehensive studies to investigate the factors that contribute to the impact of CDC on their families. Also, policies that focus on family centered rehabilitation approaches should be encouraged in an effort to decrease the overall impact of CDC on families.

Keywords: caregiver; childhood disability; chronically disabled children; family impact; family-centered services.

MeSH terms

  • Child
  • Chronic Disease
  • Consanguinity
  • Cost of Illness*
  • Disabled Children*
  • Educational Status
  • Family*
  • Female
  • Humans
  • Income
  • Intellectual Disability / complications
  • Male
  • Mothers
  • Turkey