Understanding the relationship between social support, caregiver burden, resilience and quality of life among mothers with Down syndrome children in East Kalimantan: a mixed method study

One consequence of spending time with a child with Down syndrome is that parents may spend less time interacting with their surroundings. This behaviour has an impact on parents' resilience and quality of life. This study intends to evaluate the association between social support, caregiver burden, resilience and the level quality of life among mothers with Down Syndrome Children. Materials & Method: A sequential explanatory mixed-method design was employed between February and May 2023. The study involved 182 mothers selected through purposive sampling, and quantitative data were collected using validated questionnaires measuring social support, caregiver burden, resilience, and quality of life. Data were analyzed using ANOVA, Pearson correlation, and multiple regression, while the qualitative phase utilized semi-structured interviews analyzed thematically to enrich the quantitative findings. Results: Results indicated that mothers generally had a moderate quality of life, with sociodemographic factors such as age, education, and employment showing significant associations with caregiver burden, resilience, and quality of life (p < 0.05). Caregiver burden was identified as the strongest predictor of quality of life (r = 0.67, p < 0.001; R² = 47.7%). Six key themes emerged from the qualitative analysis, including mothers’ understanding of the child’s condition, emotional responses, caregiving stressors, coping strategies, caregiving competence, and available support resources. Conclusion: Quality of life variables increase with decreasing caregiving burden and increasing social support that plays a role in maintaining resilience. There was a significant positive relationship between caregiving burden factors. However, only weak negative correlations were found between variables evaluating resilience in providing care and social support. Therefore, this study can provide guidance for the development of more effective intervention programmes in protective service providers by thinking about caregiving using this method as an early detection in maintaining and improving quality of life with a focus on reducing caregiving burden and increasing social support of parents with DS children.