ORIGINAL RESEARCH
Community Health & Disability

Assessing the Unmet Needs Among Caregivers of Children With Disabilities at Community-Based Rehabilitation Centres in Selangor

Background and Context

Caring for a child with a disability is a complex and demanding responsibility that extends far beyond the provision of physical care. Caregivers — most commonly mothers — face interconnected challenges spanning health management, educational advocacy, financial strain, social isolation, and psychological burden. In Malaysia, where formal support services for families of children with disabilities remain unevenly distributed, the unmet needs of caregivers represent a significant but under-studied dimension of public health.

The Malaysian government has made progressive strides in disability policy, including the enactment of the Persons with Disabilities Act (Act 685) in 2008, which established a legal framework for the rights, support, and protection of persons with disabilities. Community-based rehabilitation (CBR) centres, operated through collaboration between the Department of Social Welfare and the Ministry of Health, serve as a primary point of contact for families of children with disabilities, offering therapy services, skills training, and social support. However, the extent to which these centres adequately address the multifaceted needs of caregivers had not been systematically assessed in the Malaysian context.

Study Design and Methodology

This cross-sectional study was conducted among caregivers of children with disabilities attending CBR centres in the state of Selangor, Malaysia’s most populous and urbanised state. Caregivers were recruited from multiple CBR centres and completed a structured questionnaire assessing their needs across four primary domains: need for help obtaining information and services for the child, need for help coping with the child’s condition, need for help obtaining childcare, and need for financial assistance.

Each domain was assessed using a multi-item scale with responses rated on a Likert-type scale from ‘not at all needed’ to ‘extremely needed.’ Sociodemographic and child-related variables were collected to identify subgroups with particularly high levels of unmet need. Descriptive statistics characterised the pattern and intensity of needs, while regression analyses identified the child and family characteristics associated with greater unmet needs.

Key Results

The most intensely reported need was for information and services — caregivers wanted more help understanding their child’s condition, knowing what services were available, navigating the healthcare and social welfare systems, and accessing specialist therapies. This finding suggests that even among families already connected to the CBR system, significant information gaps persist. Many caregivers described a fragmented service landscape in which obtaining appropriate referrals, understanding eligibility criteria for government assistance, and coordinating care across multiple providers was confusing and burdensome.

Financial needs were the second most prominent concern. Many caregivers reported that one parent — typically the mother — had either reduced work hours or left employment entirely to provide full-time care for the child. The resulting loss of household income, combined with the additional costs associated with disability (therapy fees, assistive devices, transportation to appointments, specialised nutrition or medication), created significant financial strain. Families with lower household incomes and single-parent households reported particularly acute financial needs.

Predictors of Higher Unmet Needs

Multivariate regression analysis identified two child-related factors consistently associated with higher caregiver needs across all domains: younger age of the child and greater severity of disability. These findings reflect the particularly intensive caregiving demands associated with young children who may require constant supervision, frequent medical appointments, and intensive early intervention therapies, as well as the additional challenges posed by severe disability including complex medical needs, limited communication ability, and high physical dependence.

Caregivers of children with learning disabilities reported higher needs for information and coping support compared to those caring for children with primarily physical disabilities, possibly reflecting the less visible and more complex nature of cognitive and developmental conditions, which may be less well understood by both families and service providers.

Implications for Malaysian Disability Policy

The study’s findings carry several important implications for disability service provision in Malaysia. First, CBR centres should be resourced to provide comprehensive information and referral services, functioning as a “one-stop” point of contact that can guide families through the complex landscape of health, education, and social services available to children with disabilities. Information should be available in multiple formats (face-to-face, print, digital) and languages to ensure accessibility across Malaysia’s diverse population.

Second, financial support mechanisms for families of children with disabilities require strengthening. The existing Elaun Pekerja Cacat (Disability Worker Allowance) and welfare payments may be insufficient to offset the true economic costs of caregiving. Policy consideration should be given to expanding respite care services, which would enable caregivers to maintain employment while ensuring their children receive appropriate care.

Third, the psychological wellbeing of caregivers deserves explicit attention within the CBR framework. Peer support groups, counselling services, and stress management programmes could help address the emotional burden of caregiving that many respondents described but for which few formal supports existed.

Limitations

The study was conducted in Selangor, an urbanised state with relatively well-developed healthcare and social services infrastructure. Unmet needs among caregivers in rural or less developed states — particularly in East Malaysia — may be substantially greater. The cross-sectional design prevents assessment of how needs evolve over time as children age and disability trajectories change. Additionally, the study assessed only caregivers already connected to the CBR system; families not registered with any service provider were not captured, and their unmet needs may be even more profound.

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