Research & Publications
Our research focuses on understanding the challenges faced by parents of children with disabilities and rare diseases, examining stress levels, social support, and coping strategies. Through these insights, we aim to inform interventions and resources that strengthen family well-being and resilience.
Latest Publications
Kolaborasi Komunitas dalam Mendukung Ibu Berduka: Intervensi Psikologis bagi Keluarga dengan Anak Berpenyakit Langka
Authors: Ziadatul Hikmiah, Ade Meutia, Siti Sara Deviana
Journal: Jurnal Pengabdian Masyarakat: Darma Bakti Teuku Umar
Year: 2025
Losing a child to a rare disease is a very traumatic experience for parents, especially mothers. This community service program, held virtually from May to June 2024 in collaboration with Enabled.id, provides psychological support for grieving mothers through a structured intervention based on the PATH framework—including education on stages of grief, group sharing, mindfulness techniques, journaling, and identification of grief triggers. The program involved 15 mothers who had lost children to rare diseases or disabilities and achieved positive outcomes in emotional recovery and psychological well-being.
Urban vs Rural: Parental Stress and Social Support of Parents of Children with Disabilities
Authors: Ziadatul Hikmiah, Ari Pratiwi, Unita Werdi Rahajeng, Ade Meutia, Siti Sara Deviana, Miga Demira, Hanifah Ulya
Journal: Journal of Pediatric Medicine
Year: 2024
Parents who care for children with disabilities are known to have higher levels of stress and greater obstacles compared to parents who care for children without special needs. However, this issue has received less attention and has not been studied much. This research is a correlational quantitative study that aims to see the relationship between parental stress and social support obtained by parents of children with disabilities, which also considers the factor of residence (urban vs. rural) as a moderator. The Parental Stress Scale (PSS) and the Medical Outcomes Study Social Support Survey - MOS-SS were administered to 107 parents with children with disabilities to determine the association between stress levels and social support received. Based on the results of the correlation test, a negative and significant correlation was obtained between parental stress and social support (p<.001). This indicates that the higher the social support score, the lower the parental stress score. In addition, it was found that although it did not directly affect parental stress scores and social support partially, the location where participants lived moderated the influence of social support on parental stress.
Exploring Coping Strategies of Parents of Children with Rare Diseases: A Qualitative Study
Authors: Ziadatul Hikmiah, Ade Meutia, Siti Sara Deviana
Journal: Family Medicine & Healthcare
Year: 2024
Parents of children with special needs, such as those with rare diseases, are to experience higher levels of stress and encounter greater challenges compared to those caring for children without special needs. However, despite its importance, this issue is often unrecognizable and remain insufficiently explored. This current study is a confirmatory study with a qualitative approach that aims to investigate how parents cope with the stress associated with caring for children with rare diseases. This study aims to explore parents’ strategies to manage challenges on daily basis. Data collection involved five parents who raise children with rare diseases to explore coping strategies in dealing with parental stress when dealing with everyday caring for children with special needs. Understanding coping strategies to face challenges and stress.
Research Focus Areas
Parental Stress and Well-Being
Examining the emotional and psychological challenges faced by parents of children with disabilities and rare diseases.
Social Support and Community Resources
Investigating the role of family, community, and healthcare networks in supporting caregiving parents.
Coping Strategies and Adaptive Practices
Identifying practical and emotional strategies parents use to navigate the demands of caregiving.
Research Impact
parents raising children with disabilities or rare diseases were sampled
measures both positive and negative aspects of parenting
assesses perceived social support on a Likert scale