Listening to the screaming whisper: a voice of mother caregivers of children with autistic spectrum disorder (ASD)

Int J Qual Stud Health Well-being. 2018 Dec;13(1):1479585. doi: 10.1080/17482631.2018.1479585.

Abstract

Purpose: This is a gap in knowledge related to leisure behaviours among mothers who have children with autistic spectrum disorder (ASD). This study intended to understand leisure behaviours associated with leisure constraints among these mother caregivers.

Method: Using a series of semi- structured interviews, a total of 12 participants engaged in this study.

Results: Our findings consisted of two sections: (1) leisure negotiation and (2) leisure constraints which are (a) a lack of time for themselves, (b) constant attention, and (c) difficulty in finding a helper.

Conclusions: This study found that participants modified their leisure patterns as they sought to provide more recreational opportunities for their children. It suggests that participants negotiated their leisure choices and developed family adaptability related to family leisure in order to suit the desires and needs of their child with ASD.

Keywords: Autistic disorder; health; leisure constraint; mother caregivers.

MeSH terms

  • Activities of Daily Living
  • Adaptation, Psychological
  • Adolescent
  • Adult
  • Attention
  • Attitude
  • Autism Spectrum Disorder*
  • Caregivers
  • Child
  • Disabled Children
  • Female
  • Humans
  • Leisure Activities*
  • Male
  • Middle Aged
  • Mother-Child Relations*
  • Mothers / psychology*
  • Negotiating*
  • Qualitative Research
  • Quality of Life / psychology*
  • Recreation
  • Stress, Psychological*
  • Surveys and Questionnaires