Latino families with a child with Prader-Willi syndrome: exploring needs for support

J Soc Work Disabil Rehabil. 2014;13(3):207-25. doi: 10.1080/1536710X.2014.912184.

Abstract

Prader-Willi syndrome (PWS) is a complex, genetically based disorder; caring for a family member with a disability such as PWS brings significant challenges to the whole family. However, no research has been conducted focusing on the impact of PWS in the dynamics of Latino families. This qualitative study explored the challenges and need for support services among Latino families of children with PWS. Findings of the study suggest the need for support services geared toward the whole family unit to help members cope with daily challenges at home.

Keywords: children; disability; empathy and support; ethnic minorities; individuals with disabilities; qualitative research; social work; social work and disability.

MeSH terms

  • Adaptation, Psychological
  • Adolescent
  • Adult
  • Child
  • Child Behavior
  • Family Health
  • Female
  • Hispanic or Latino*
  • Humans
  • Interviews as Topic
  • Male
  • Middle Aged
  • Needs Assessment*
  • Parents / psychology
  • Prader-Willi Syndrome / psychology*
  • Siblings / psychology
  • Social Support*
  • Spirituality
  • Stress, Psychological / etiology