Carer Experience with Children with Down Syndrome

• Main Authors: Yuzana, Mohd Yusop, Noor Asmieza Amiera, Zawawi
• Format: Article
• Language: English
• Published: 2018
• Subjects: R Medicine (General); RT Nursing
• Online Access: http://eprints.unisza.edu.my/6191/1/FH02-FP-18-18030.pdf; http://eprints.unisza.edu.my/6191/

This paper explores the experiences and coping approaches of Down syndrome carers resulting from in-depth interviews among five families with children with Down syndrome in Kuala Terengganu. The purpose of the interviews was to examine family carers’ experiences and get in touch with the child. The paper specifically focuses on the issues of tolerance, sacrifice and attention in handling such children and coping with adaptation to the role of carer. The findings reveal that for the majority of family carers, their experience was one of constant searching for support and information. The anxiety and frustration associated with unpredictable and irregular support and a lack of information were major sources of concern for the carers in the study. However, carers were found to use a number of positive and negative coping approaches to deal with the pressure associated with their caregiving role. The study also concluded that the benefits of knowing a person with Down syndrome may extend beyond the immediate family members and into the community.