Challenges in Healthcare Management of Individuals with Special Needs in Malaysia: Perceptions of Caregivers

AIMS AND OBJECTIVES: A “caregiver” is responsible for managing the basic needs of others, including individuals with special needs (IWSNs). Caregivers play an important role in the well-being of IWSNs, though caring can lead to a decline in health and quality of life. This qualitative study aimed to investigate the perceived healthcare challenges faced by caregivers of IWSNs in Malaysia. MATERIALS AND METHODS: Thirty-two primary caregivers were interviewed via audio-recorded semistructured focus group discussions to investigate their perceived barriers and challenges in caring for IWSNs. The qualitative data were then analyzed via thematic analysis. RESULTS: Thirty-two participants took part in a total of nine discussion sessions, where the majority were females (n = 29; 90.63%) and from the Malay race (n = 30; 93.75%). Most of the IWSNs under their care had autism (n = 11; 34.38%) and were between 6 and 10 years of age (n = 13; 40.63%). The main themes identified were related to healthcare services, support systems, caregivers’ personal factors, and IWSN issues. Within the healthcare services domain, themes regarding the accessibility and appropriateness of healthcare facilities and the attitudes of staff were uncovered, whereas in the support system domain, themes pertaining to community and peer, family, and governmental support were discussed. In the domain of caregivers’ personal factors, themes regarding stress with the burden of care and feelings of guilt were noted, and in the area of IWSN factors, the theme of behavioral difficulties exhibited by IWSNs was discussed. CONCLUSION: Primary caregivers in Malaysia face challenges with healthcare facilities and staff, gaining support from the community, family, and government, burning out, and feeling guilty as well as behavior issues of their IWSN. Thus, understanding these challenges is vital in providing healthcare services that cater to not only IWSNs but also their caregivers to ensure the success and well-being of all involved.