Introduction
Caregiving for children with intellectual and developmental disabilities (IDD) presents significant challenges for families in Malaysia. Caregivers often face substantial social, logistical, and technical support needs, particularly in rural areas where access to state and NGO services is limited. Existing literature highlights the burden on caregivers, including lack of quality family time, concerns about their children's future, and financial difficulties. This study examines how benefit finding and optimism, as coping strategies, impact caregivers of children with IDD in Malaysia, building upon prior research linking these positive attitudes to improved well-being. The study acknowledges the diverse cultural and religious perspectives on disability in Malaysia, recognizing that these factors influence caregiver experiences and coping mechanisms. The influence of benefit finding and optimism on personal growth, relationships, spirituality, and positive perceptions of caregiving are explored within the Malaysian context.
Literature Review
Previous research indicates that benefit finding and optimism are crucial coping strategies for caregivers of children with disabilities. Benefit finding involves identifying positive aspects of the caregiving experience, while optimism reflects a positive outlook and expectation of favorable outcomes. Studies have shown that these strategies help alleviate stress, promote personal growth, and improve relationships. However, further research is needed to understand the interplay between these constructs and to generalize findings across diverse populations and contexts. The current study addresses this gap by focusing specifically on caregivers in Malaysia, a context with unique cultural and religious factors influencing perceptions of disability and caregiving.
Methodology
This qualitative study employed in-depth interviews with 20 caregivers of children with IDD in Malaysia. Participants were recruited through a convenience sampling technique, utilizing caregivers accessing services at a Community-Based Rehabilitation (CBR) center at Universiti Sains Malaysia. Inclusion criteria included being a primary and full-time caregiver who had cared for their child for at least six months. Semi-structured interviews were conducted between October 2021 and January 2022, using both Malay and English, lasting between 40 and 120 minutes. Due to COVID-19 restrictions, interviews were conducted via phone and Google Meet. Interviews were recorded, transcribed (at least twice for accuracy), and analyzed thematically to identify key themes and sub-themes, with verbatim quotes used to illustrate the findings. Ethical approval was obtained from the Human Research Ethics Committee (JEPeM), Universiti Sains Malaysia, with measures taken to ensure confidentiality and informed consent. Data saturation was used to determine sample size.
Key Findings
The study identified several key benefits associated with benefit finding and optimism among caregivers.
**Personal Growth:** Caregivers reported increased self-awareness and understanding of their child's needs and behaviors. One caregiver described learning to understand the reasons behind their nonverbal child's tantrums, leading to improved communication and understanding. Others reported increased knowledge and understanding of their child's condition, which enhanced their ability to provide care. A male caregiver shared his journey from denial to acceptance of his child's autism, highlighting personal growth over 13 years of caregiving.
**Improved Relationships:** Caregivers described improved relationships with their children, characterized by increased communication, shared emotions, and mutual respect. Openness and transparency about struggles were identified as contributing factors. Additionally, caregiving for children with IDD fostered stronger bonds among extended family members, who became more accepting and supportive.
**Dimensions of Spirituality:** Many caregivers incorporated spirituality into their caregiving, drawing strength and purpose from their faith. This strengthened their sense of duty and provided comfort during challenging times. Several caregivers highlighted Islamic beliefs about the reward in the afterlife for caring for children with disabilities.
**Positive Perceptions:** Caregivers reported managing their expectations and maintaining a positive outlook, even in the face of significant challenges. Gratitude for their child's survival, realistic expectations about their child's capabilities, and reliance on professional support were noted as factors that positively influenced their caregiving experience.
Discussion
This study's findings support the significant role of benefit finding and optimism as coping mechanisms for caregivers of children with IDD. The results align with previous research demonstrating positive adaptational outcomes associated with these strategies, including improved quality of life and reduced risk of depression. The study confirms that caregivers can experience personal growth, strengthened family relationships, and enhanced spiritual well-being despite the challenges of caregiving. The findings also highlight the importance of cultural and religious context in shaping caregivers' experiences and coping strategies. The integration of spirituality and religious beliefs played a significant role in providing meaning and resilience for many participants. The study contributes to a deeper understanding of the positive aspects of caregiving, which is crucial for developing effective support interventions.
Conclusion
Benefit finding and optimism are essential for navigating the challenges of caregiving for children with IDD. The study underscores the importance of targeted interventions to support caregivers in adopting these strategies. Policymakers and NGOs should provide greater access to services and support, particularly for caregivers in rural and low-income communities. Collaboration between agencies and the inclusion of caregivers in policy-making are crucial for improving the well-being of both caregivers and children with IDD. Future research could explore the long-term effects of these strategies and the development of culturally sensitive interventions.
Limitations
The study's limitations include a lack of diversity in terms of race and ethnicity, the exclusion of severity of disability and attitudinal factors, and the absence of an examination of the correlation between benefit finding, optimism, and other family stressors such as financial implications and marital satisfaction. The use of telephone and video conferencing interviews due to COVID-19 restrictions may have also impacted the depth of rapport and communication with participants.
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