Knowledge and belongingness: experiences of a programme for parents of children with autism

ABSTRACT

Background

Whilst lack of social support has been associated with stress for parents of children with autism, group programmes for parents which bring together those with similar experiences and provide learning and resources can offer a form of social support. Although studies of such programmes suggest positive outcomes, including in terms of children’s adaptive behaviour, research examining parental perspectives on interventions that set out specifically to provide support to reduce stress in parents of children with autism is still scarce.

Purpose

Set in a Swedish context, the aim was to investigate whether a group education programme for parents of children with autism could be viewed as a site of informal social support and considered fertile ground for procuring social capital.

Method

Participants were parents of children who had been given an autism diagnosis at around three years of age. They had all taken part in a group education programme designed to facilitate experience-sharing in meetings between parents. The parents were interviewed about their experiences and perceptions of its influence on their everyday lives. Data were analysed qualitatively, using a Community of Practice lens.

Findings

The in-depth analysis indicated that, according to participants, the programme had helped alleviate feelings of isolation and improve parenting confidence. The findings speak to the importance of personal investment for knowledge acquisition and implementation, demonstrating the connections between the acquisition of social capital and membership of a Community of Practice.

Conclusion

Building on previous research emphasising the role of social support for the quality of life for parents of children with autism, the study highlights how a parental group education programme can represent a valuable social setting which is conducive for learning and resource procurement. Knowledge and belongingness in a social community – which enables access to, and sharing of, resources – are both of crucial relevance to outcomes and quality of life for families.

KEYWORDS:

• Autism
• children
• parents
• preschool
• Community of Practice
• parental group education programme

Acknowledgements

The authors thank all the parents who participated in this study and kindly shared their experiences.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This study was supported by a grant from the AnnMari and Per Ahlqvists Stiftelse.