Navigating the terrain of caregiving of children with intellectual and developmental disabilities: importance of benefit finding and optimism

The study investigates how caregivers of children with intellectual and developmental disabilities (IDD) in Malaysia utilize benefit finding and optimism to cope with caregiving demands. In Malaysia, caregivers face considerable challenges related to limited social, logistical, and technical support, especially outside urban areas. Prior research highlights caregiver burden, including reduced family time, concerns about education and employment for the child, and financial strain, which negatively impact caregivers’ psychological well-being and quality of life. The research aims to understand how positive coping constructs—benefit finding and optimism—aid caregivers in managing responsibilities and maintaining well-being within the Malaysian sociocultural context.

Disability in Malaysia is understood through lenses of stigma and religious beliefs, with some communities viewing disability as a divine gift and others associating it with taboos. Traditional healers may be consulted, though many Malaysians attribute disability to emotional, social, or psychological causes. The literature on benefit finding and optimism suggests these constructs mitigate negative caregiving impacts and foster personal growth, positive contributions, gratifications, and positive perceptions of caregiving. Optimism may influence benefit finding indirectly through positive reappraisal and social support. Prior studies show that a benefit-finding/optimistic approach enhances caregivers’ quality of life, reduces depression, and supports well-being, though more research is needed on mechanisms and generalizability, especially in diverse contexts.

Design: Qualitative study using in-depth, semi-structured interviews to elicit detailed, sensitive perspectives on caregiving experiences and the roles of benefit finding and optimism. Sampling and participants: Convenience sampling of 20 family caregivers (parents) of children with intellectual and developmental disabilities connected to Community-Based Rehabilitation (CBR) centres at Universiti Sains Malaysia. Inclusion criteria: (i) primary, full-time caregiver of a child with IDD; (ii) member of nuclear, extended, or single-parent family; (iii) co-resided with and cared for the child for at least six months. Sample size was guided by data saturation. Data collection: Interviews conducted October 2021–January 2022 via telephone and Google Meet due to COVID-19; duration 40–120 minutes each; conducted in Malay and English; audio recorded with consent; verbatim transcription and translation into English; pseudonyms used. Data analysis: Transcripts were repeatedly reviewed for accuracy, coded, organized, and grouped into themes and sub-themes aligned with study objectives; illustrative verbatim quotes presented. Ethics: Ethical approval from Human Research Ethics Committee (JEPeM), Universiti Sains Malaysia (USM/JEPeM/19120969). Informed consent obtained; confidentiality ensured; participants could withdraw at any time; interviews scheduled at participants’ convenience and in preferred language.

Participants: 20 Malaysian caregivers (12 mothers, 8 fathers), ages 35–56; caregiving duration 5–16 years. Thematic findings: - Personal growth: Caregivers reported enhanced knowledge of disabilities, greater acceptance, improved problem-solving and understanding of their children, and growth in patience and self-understanding, facilitated by benefit finding and optimism. - Improved relationships: Positive reframing and transparent communication improved parent–child relationships and broader family cohesion, with collective caregiving strengthening bonds and social support. - Dimensions of spirituality: Spiritual and religious beliefs framed caregiving as divinely ordained, increasing purpose, gratitude, and endurance, with expectations of spiritual rewards reinforcing commitment. - Positive perceptions: Caregivers managed expectations realistically, practiced gratitude, relied on professional support where needed, and avoided unrealistic developmental expectations, which supported psychological coping and reduced distress. Overall, benefit finding and optimism supported caregiving skills, guided responsibilities, fostered personal growth and spirituality, improved relationships, and sustained positive perceptions.

Findings indicate that positive coping strategies—benefit finding and optimism—help caregivers navigate the psychological and practical demands of caring for children with IDD. These strategies align with existing literature linking positive reappraisal and social support to enhanced quality of life, reduced depression, and post-traumatic growth among caregivers. Participants described stressors but also reported transformation, including increased patience, compassion, and strengthened family bonds. Enabling environments (flexible work conditions, social support) alleviated burdens. The results underscore the importance of fostering optimistic and benefit-focused mindsets while addressing structural barriers to services, especially for rural and low-income families. Policy and inter-agency collaboration can enhance access to care, rehabilitation, and support services, thereby amplifying the benefits of individual-level positive coping.

Benefit finding and optimism are key components of effective coping for caregivers of children with IDD, contributing to sustained caregiving, reduced psychological burden, and enriched meaning in the caregiving role. Practical implications include the need for targeted interventions by policymakers and NGOs to support caregivers in applying these strategies, along with advocacy for improved access to quality services. Future research should broaden demographic diversity, consider disability severity and attitudinal factors, and examine interactions between benefit finding/optimism and other family stressors (e.g., financial strain, marital satisfaction) to strengthen generalizability and inform tailored interventions.

- Limited racial and ethnic diversity among respondents, affecting generalizability. - Did not account for the severity of children’s disabilities or parental attitudinal factors that may influence stress. - Did not examine correlations between benefit finding/optimism and other family stressors (e.g., financial strain, marital satisfaction). - COVID-19 constraints necessitated remote interviews (phone/Google Meet), which may have impeded rapport, requiring more time to build trust and potentially affecting the depth of data.