Ibrahim, Hasniza and Razak, Marini and Aman, Azlina and Sheikh Ahmad, Ismail
(2019)
Our child is dying: exploring the experiences, challenges and coping mechanisms of Malaysian parents as caregivers of a child with cancer.
JATI-Journal of Southeast Asian Studies, 24 (2).
pp. 67-90.
ISSN 1823-4127
E-ISSN 2600-8653
Abstract
Parents as caregivers to paediatric cancer patients face various challenges. This
paper highlights the characteristics, caregiving tasks, resources, and other role
demands/stressors experienced by a pair of parents as primary family caregivers
of a child with cancer in the Malaysian setting. Besides, coping strategies are also
put forward as a significant element in understanding the functions of a parent
as a caregiver. Hence, this study aims to explore the in-depth experiences of
caregivers and investigate the challenges as well as the coping strategies adopted
by them, particularly as Muslims. Eight (8) main themes emerged from the
findings: (i) chronology; (ii) caregiver roles; (iii) routine changes; (iv) making
decisions; (v) financial; (vi) letting go; (vii) external support; and (viii) internal
support. This study is unique because the patient was an only child, and he
managed to score excellent grades in all subjects in the Malaysian Primary School
Achievement Test (UPSR) despite not attending school for almost one year due
to cancer treatments.
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