The experiences of mothers caring for a child with developmental disabilities: a cross cultural perspective

Kuljit Heer, John Rose*, Michael Larkin, Nidhi Singhal

*Corresponding author for this work

Research output: Contribution to journalArticle

Abstract

Purpose – India has one of the more progressive disability frameworks in the developing world which tends to adopt western philosophies and principles (e.g. parent participation and advocacy) which to some degree mirrors the type of service delivery in the UK. The purpose of this paper is to adopt a cross-cultural perspective to explore caregiving amongst parents caring for a child with intellectual/developmental disabilities in India. Design/methodology/approach – Three focus groups were used to interview parents at Action for Autism (AFA) located in Delhi, India. The focus groups explored how disability is encountered within an Indian context. Findings – Two main themes were identified in the parents narratives which were “making the decision to get help” and “seeing disabilities in from a new perspective”. Family members played an important role in the decision to get help and acted as a platform for mothers to explore their own concerns. Seeing disability from a new perspective was a four stage process which included initially accepting the diagnosis and their child; regaining control through parenting skills training; witnessing positive changes in their children and themselves and reaping personal benefits as a result of their involvement with AFA. Research limitations/implications – The research is very small scale and focused on parents in a specific organisation, as a consequence the results cannot be generalised. Originality/value – The discourses of these individuals do provide a useful insight into the provision of services to children in India and provide a starting point for cross-cultural understanding of parenting children with disabilities.

Original languageEnglish
Pages (from-to)218-232
Number of pages15
JournalInternational Journal of Human Rights in Healthcare
Volume8
Issue number4
DOIs
Publication statusPublished - 1 Dec 2015

Keywords

  • Autism
  • Developmental disability
  • Health
  • Intellectual disability
  • Interpretative phenomenological analysis
  • Multi-cultural

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