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Behind the Scenes of Parents Nurturing a Child with Autism: A Qualitative Study in Malaysia

Author

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  • Wan Natrah Wan Yaacob

    (Department of Family Medicine, School of Medical Sciences, Universiti Sains Malaysia, Kota Bharu 16150, Kelantan, Malaysia)

  • Lili Husniati Yaacob

    (Department of Family Medicine, School of Medical Sciences, Universiti Sains Malaysia, Kota Bharu 16150, Kelantan, Malaysia)

  • Rosediani Muhamad

    (Department of Family Medicine, School of Medical Sciences, Universiti Sains Malaysia, Kota Bharu 16150, Kelantan, Malaysia)

  • Maryam Mohd Zulkifli

    (Department of Family Medicine, School of Medical Sciences, Universiti Sains Malaysia, Kota Bharu 16150, Kelantan, Malaysia)

Abstract

Many parents have experienced difficulties in parenting children with autism. We, therefore, consider a more in-depth understanding that is necessary to explore the challenges facing parents and families to provide a better outcome for both. We interviewed 21 parents of 24 children with autism spectrum disorder (ASD) to qualitatively explore the challenges they experienced through a phenomenological framework. Four main aspects emerged as challenges to the parents: inadequate knowledge, psychological distress and stigma, lack of support, and barriers to services. These four themes reflect a lack of balance between the needs of caregivers and the services and resources or support available in the community to meet those needs. Our study contributes to an understanding of how parents perceive challenges, making it easier to take necessary action to meet their needs and ease their burden of stress. A concerted effort is needed to coordinate services across all disciplines to address these challenges.

Suggested Citation

  • Wan Natrah Wan Yaacob & Lili Husniati Yaacob & Rosediani Muhamad & Maryam Mohd Zulkifli, 2021. "Behind the Scenes of Parents Nurturing a Child with Autism: A Qualitative Study in Malaysia," IJERPH, MDPI, vol. 18(16), pages 1-13, August.
    • Handle: RePEc:gam:jijerp:v:18:y:2021:i:16:p:8532-:d:613208
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    Cited by:

    1. Wan Natrah Wan Yaacob & Lili Husniati Yaacob & Maryam Mohd Zulkifli & Rosediani Muhamad, 2022. "A Journey towards Resilience: Coping Strategies Adopted by Parents with Children Having Autism Spectrum Disorder in Northeast Malaysia," IJERPH, MDPI, vol. 19(4), pages 1-11, February.
    2. Louis John Camilleri, 2022. "Exploring the Lived Experiences of Fathers of Children on the Autism Spectrum: A Narrative Inquiry," SAGE Open, , vol. 12(2), pages 21582440221, April.

    More about this item

    Keywords

    autism; parents; challenges;
    All these keywords.

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