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

• Date: 21 December 2015
• Published date: 21 December 2015
• Pages: 218-232
• DOI: https://doi.org/10.1108/IJHRH-06-2014-0011
• Author: Kuljit Heer,John Rose,Michael Larkin,Nidhi Singhal
• Subject Matter: Health & social care,Vulnerable groups,Inequalities & diverse/minority groups

The experiences of mothers caring for

a child with developmental disabilities:

a cross cultural perspective

Kuljit Heer, John Rose, Michael Larkin and Nidhi Singhal

Dr Kuljit Heer is based at

School of Psychology,

University of Birmingham,

Birmingham, UK.

Professor John Rose is Director

Forensic Clinical Psychology

Doctorate at School of

Psychology, University

of Birmingham,

Birmingham, UK and

Academic Unit, St Andrews

Health Care, Northampton, UK.

Dr Michael Larkin is based at

School of Psychology,

University of Birmingham,

Birmingham, UK.

Nidhi Singhal is based at

Research and Development,

Action for Autism (AFA), The

National Centre for Autism,

New Delhi, India.

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.

Keywords Autism, Health, Intellectual disability, Multi-cultural, Developmental disability,

Interpretative phenomenological analysis

Paper type Research paper

Culture can have a significant impact on the way in which families experience and perceive

disability. For example, it can influence the way in which disability is labelled, understood and

experienced within a family. In turn, families’understandings can influence service uptake, and

engagement with diagnosis and interventions (Skinner and Weisner, 2007). While families’

understandings are not exclusively derived from the cultural context (unless we include family

scripts and narratives under the umbrella of “culture”), it does have a significant role to play in

providing people with the resources and positions from which to make sense of their

experiences.

Interest in the cultural context of parents’understandings of children diagnosed with autism is a

relatively recent concern with the field of intellectual and developmental disability research (Daley,

2002). Researchers have suggested that the diagnosis and treatment of autism is intimately

connected to cultural context (e.g. Ennis-Cole et al., 2013; Pitten, 2008). This follows from

Received 5 June 2014

Revised 5 June 2014

19 September 2014

10 January 2015

23 March 2015

5 May 2015

Accepted 15 May 2015

PAGE218

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INTERNATIONALJOURNAL OF HUMAN RIGHTS IN HEALTHCARE

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VOL. 8 NO. 4 2015, pp.218-232, © Emerald Group Publishing Limited, ISSN 2056-4902 DOI 10.1108/IJHRH-06-2014-0011