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Article
Publication date: 21 December 2015

Kuljit Heer, John Rose, Michael Larkin and Nidhi Singhal

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…

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.

Details

International Journal of Human Rights in Healthcare, vol. 8 no. 4
Type: Research Article
ISSN: 2056-4902

Keywords

Article
Publication date: 5 October 2015

Kuljit Heer, Michael Larkin and John Rose

The purpose of this paper is to explore the role of culture in shaping the caregiving experiences of British South Asian families caring for a child with developmental…

1335

Abstract

Purpose

The purpose of this paper is to explore the role of culture in shaping the caregiving experiences of British South Asian families caring for a child with developmental disabilities in the UK. In particular it explores how the coexistence of two distinct cultures (British/South Asian) impacts upon these caregiving experiences.

Design/methodology/approach

A qualitative design using in-depth interviews and interpretative phenomenological analysis was used with seven parents identifying as British South Asian who had been born in the UK or had moved to the UK as young people.

Findings

Three master themes emerged: living with loss, uncertainty and overwhelming responsibility; learning about disability and facing stigma; and having to cope.

Research limitations/implications

Using a relatively homogeneous sample of carers this study provides an insight into how exposure to two different cultures shapes the understanding and adaptations of British South Asian carers in the UK.

Social implications

Issues in the acculturation of these parents emerge which demonstrate the tensions they face in relating to both South Asian and Western cultural influences. The study makes recommendations for how services can work with such families in order to help them make sense of their children’s disability, access culturally appropriate support and cope with the numerous demands of being a caregiver.

Originality/value

This paper contributes to a growing literature on the experience of South Asian parents who care for children with intellectual disabilities. It has important messages for workers about how to support these individuals most effectively.

Details

Tizard Learning Disability Review, vol. 20 no. 4
Type: Research Article
ISSN: 1359-5474

Keywords

Article
Publication date: 13 July 2012

Kuljit Heer, Michael Larkin, Ivan Burchess and John Rose

This study aims to explore the cultural context of care‐giving amongst South Asian communities caring for a child with intellectual disabilities in the United Kingdom.

Abstract

Purpose

This study aims to explore the cultural context of care‐giving amongst South Asian communities caring for a child with intellectual disabilities in the United Kingdom.

Design/methodology/approach

In the context of the United Kingdom's Children's Intellectual Disability Services, the study set out to develop a culturally sensitive account of Sikh and Muslim parents' experiences of caring for a child with intellectual disabilities. Focus groups were conducted with parents from Sikh and Muslim support groups who were all accessing intellectual disability services for their children. Transcripts were analyzed using interpretative phenomenological analysis, a qualitative technique.

Findings

Three master themes emerged from the analysis which were: Making sense of the disability; Feeling let down by services and Looking to the future. These themes reinforce findings from previous research particularly in relation to difficulties when making sense of the disabilities and difficult interactions with services.

Practical implications

The study makes recommendations for service delivery to ethnic minority groups including being aware of intra‐group variations in the interpretations and responses of South Asian parents.

Originality/value

Ultimately, the study makes recommendations for developing culturally sensitive support and interventions for ethnic minority groups which is important given the increase in multi‐ethnic populations in the UK.

Details

Advances in Mental Health and Intellectual Disabilities, vol. 6 no. 4
Type: Research Article
ISSN: 2044-1282

Keywords

Article
Publication date: 12 July 2013

Biza Stenfert Kroese, John Rose, Kuljit Heer and Alexis O’Brien

The current qualitative study aims to investigate service users’, support staff's and community team members’ views of gender differences in cause and presentation of mental…

Abstract

Purpose

The current qualitative study aims to investigate service users’, support staff's and community team members’ views of gender differences in cause and presentation of mental health problems, whether current services respond differently to men and women with mental health problems and areas in which services can become more gender sensitive.

Design/methodology/approach

Two focus groups were conducted with service users with intellectual disabilities and mental health problems in addition to two focus groups with a variety of staff. Subsequently, individual interviews were conducted with both male and female staff members employed in residential and community intellectual disability services. The number of participants totalled 54 (16 service users and 38 staff). Thematic analysis was adopted in order to identify dominant themes in the discourse of these stakeholder groups.

Findings

The analysis produced a number of themes which include: compliance versus challenge; vulnerability; expression of emotion; gender equality; same sex support; caring qualities; and boundaries.

Originality/value

A number of suggestions for improving services are discussed in the context of the current findings.

Details

Advances in Mental Health and Intellectual Disabilities, vol. 7 no. 4
Type: Research Article
ISSN: 2044-1282

Keywords

Content available
Article
Publication date: 5 October 2015

Peter McGill

164

Abstract

Details

Tizard Learning Disability Review, vol. 20 no. 4
Type: Research Article
ISSN: 1359-5474

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