Barriers to unmet needs among mothers of children with disabilities in Kelantan, Malaysia: A qualitative study

Abstract

Objectives The present study aimed to determine the barriers that deter mothers of children with disabilities from attaining their unmet needs. Methods In-depth interviews of 12 mothers of children with disabilities were conducted from November 2014 to January 2015 in Kelantan, Malaysia. The mothers were recruited by purposive sampling. Thematic analysis was used for identifying, analysing and reporting the data. Results Barriers to the unmet needs among mothers of children with disabilities were found to stem from the mothers' expectation and further propagated by lack of support, the role of healthcare professionals in providing care, inappropriate policies and shortage of resources required for survival and maintaining care. Conclusions Identification of the barriers to the attainment of unmet needs among mothers of disabled children is crucial for resolving the issue of unmet needs. Deeper understanding of these barriers may facilitate positive actions toward addressing the needs of these mothers and to alleviate the stress on mothers of disabled children. A concerted effort to coordinate services across all disciplines is required to dismantle these barriers by improving the provision of health care delivery and evaluation of welfare policies and services.

Experiences of parents and caregivers of children with disability on community-based rehabilitation (CBR) services in Malaysia: A qualitative study

“…The systematic process must be adapted in all the prevention and treatment activities or services that focus on physical impairments, activity limitations, and individual abilities. 10 Although specific rehabilitation in a community is one of the significant obstacles faced by parents and caregivers of disabled children, especially for working parents, they highlighted that CBR activities fulfilled their disabled child's need in terms of performing a basic activity of daily living, such as eating independently, toileting, and grooming. Despite their "hope," most of them were realistic about their child's improvement, and they felt satisfied with the program activities.…”

Experience of Caregivers Caring for Children with Cerebral Palsy in Accessing Oral Health Care Services: A Qualitative Study

“…Providing basic essentials for children with CP place a financial implication for the caregiver (Davis et al, 2010;Sukeri et al, 2017). Most of the caregivers needed financial help for purchasing food or special equipment for their child with disability (Suriati et al, 2011).…”

“…High out-of-pocket cost of medical, dental and support service for people with complex illness was reported in Southwestern states in the United States as well as in South Australian states (Pradhan et al, 2009;Resch et al, 2010). In Malaysia, the children with CP who are registered with Department and rejected which consequently caused even more unmet needs in various aspects of their lives (Sukeri et al, 2017). Therefore, supportive programme needs to be developed and established to overcome this issue and to elevate understanding of the public regarding people with disability.…”

Experiences of mothers of children with Down syndrome

“…According to Ali et al, staff attitudes and behaviors were negative, leading to failures in providing reasonable services and status differences [12], as health workers rarely communicated with affected individuals in the correct manner [13]. The lack of support and care, as well as inappropriate policies, also become obstacles in caring for children with special needs in developing countries [14].…”