Care demands on mothers caring for a child with Down syndrome: Malaysian (Sarawak) mothers' perspectives

Authors

  • Kim Geok Chan PhD,

    Senior Lecturer, Corresponding author
    1. Faculty of Medicine and Health Sciences, Universiti Malaysia, Sarawak, Malaysia
    • Correspondence: Kim Geok Chan, Faculty of Medicine and Health Sciences, Universiti Malaysia Sarawak, Lot 77, Section 22, Kuching Town Land District, Jalan Tun Ahmad Zaidi Adruce, 93150 Kuching, Sarawak, Malaysia. Email: kgchan@fmhs.unimas.my; kimgeokchan@gmail.com

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  • Khatijah Abdullah Lim PhD,

    Associate Professor
    1. Department of Nursing Science, Faculty of Medicine, University of Malaya, Kuala Lumpur, Malaysia
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  • How Kee Ling PhD

    Associate Professor and Director
    1. Centre of Excellence for Disability Studies, Universiti Malaysia Sarawak, Kuching, Sarawak, Malaysia
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  • Institution at which the work was carried out: University of Malaya, Kuala Lumpur, Malaysia.

Abstract

This paper examines the experiences of mothers caring for a child with Down syndrome in the Malaysian (Sarawak) context. Qualitative interviews were conducted with 26 biological mothers of children with Down syndrome aged 18 years and below. They were accessed through selected child health clinics, community-based rehabilitation centres and schools using purposive sampling within two regions in Sarawak, one of the two Borneo States of Malaysia. Major themes emerging within the context of care demands were children's health, developmental delays, daily needs and behaviour issues. The insights obtained into the care demands experienced by mothers of children with Down syndrome have several implications for practice by care professionals.

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