Parents’ experiences of raising adolescents with intellectual or developmental disabilities

ABSTRACT

Background

Parents of children with intellectual or developmental disabilities have unique challenges in navigating the developmental period of adolescence. The present study explored the experiences of parents connected with disability services throughout the island of Ireland of parenting their child during adolescence.

Method

Five focus groups were conducted with twenty-five parents of adolescents and young adults with intellectual or developmental disabilities. Parents were asked open-ended questions about their experiences of raising their adolescent child. Transcripts of the focus groups were coded using reflexive thematic analysis.

Results

On the journey from childhood to adolescence parents have to manage a number of different stressors with and for their child. These occur at societal, service provision, familial, and personal levels, with each stressor interacting with others to create vicious circles of struggle.

Conclusions

Parents' struggles are multi-fold, and are not discreet entities that can be separated. The struggle is dynamic and continuous.

KEYWORDS:

• Parent support
• adolescence
• thematic analysis
• focus groups

Acknowledgements

The authors would like to thank Aoife O’Leary and Grainne Hampson for their work in supporting this project. Most of all, the authors would like to thank and acknowledge the parents who took part in the project and gave their time and wisdom.

Conflict of interest

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

Disclosure statement

John Sharry is CEO of Parents Plus and receives a salary for his work for the charity. Charlotte Wilson sits on the board of Parents Plus and does not receive financial or other compensation for this. John Kerr declares no conflict of interests.