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Family Support Experiences of Adult Persons with Intellectual Disability and Challenging Behaviour: A Scoping Review of Qualitative Studies

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Listed:
  • Alice Nga Lai Kwong

    (S.K. Yee School of Health Sciences, Saint Francis University, Hong Kong 999077, China)

  • Lisa Pau Le Low

    (S.K. Yee School of Health Sciences, Saint Francis University, Hong Kong 999077, China)

  • Maggie Yat Cheung Wong

    (S.K. Yee School of Health Sciences, Saint Francis University, Hong Kong 999077, China)

Abstract

There has been scant research on the experiences of families caring for adults with intellectual disability who use challenging behaviour as a way of making their needs known. The aim of this scoping review was to synthesize the qualitative research data on the family support experiences of adult family members with intellectual disability who use challenging behaviour in this way. A systematic search was undertaken from five databases during December 2024 and updated in April 2025. A total of 20 studies were included in the review. Data were analysed using a thematic analysis method. The number of study participants in these studies ranged from 4 to 30. Most of them were parents and predominantly mothers. The results show that caring for adults with intellectual disability and challenging behaviour reflects a dual reality. The negative experiences refer to caregiving difficulties and inadequate formal support, while the positive experiences are associated with support from informal sources and caregivers’ fulfilment and gains. The available research did not offer sufficient data for a synthesis of how families might be affected by challenging behaviour. Future research should investigate how the negative and positive aspects of their families can be shaped to make a positive impact on caring for people with intellectual disability and co-existing challenging behaviour.

Suggested Citation

  • Alice Nga Lai Kwong & Lisa Pau Le Low & Maggie Yat Cheung Wong, 2025. "Family Support Experiences of Adult Persons with Intellectual Disability and Challenging Behaviour: A Scoping Review of Qualitative Studies," IJERPH, MDPI, vol. 22(6), pages 1-13, June.
    • Handle: RePEc:gam:jijerp:v:22:y:2025:i:6:p:911-:d:1673913
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    References listed on IDEAS

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    1. Mabel Oti-Boadi, 2017. "Exploring the Lived Experiences of Mothers of Children With Intellectual Disability in Ghana," SAGE Open, , vol. 7(4), pages 21582440177, December.
    2. Anna Gutowska, 2022. "The Care of Adults with Intellectual Disabilities: Informal (Family) Caregivers’ Perspectives," IJERPH, MDPI, vol. 19(23), pages 1-14, November.
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