Exploring Parents’ Experiences in Caring for Children with Chronic Illness: A Qualitative Study of Family-Centered Care
Keywords:
Parental Experiences, Chronic Illness, Family-Centered CareAbstract
Background: Caring for children with chronic illnesses requires parents to manage complex treatment demands, emotional uncertainty, changing family roles, and healthcare access barriers. Understanding these experiences is essential for developing culturally responsive family-centered pediatric care across diverse local communities.
Research Objective: This study explored parents’ experiences in caring for children with chronic illnesses in Baubau, Southeast Sulawesi, from a family-centered care perspective.
Methods: A qualitative descriptive study with a phenomenological approach involved 15 parents selected through purposive sampling. Data were collected through face-to-face, semi-structured, in-depth interviews and field notes. Interviews were transcribed verbatim and analyzed using Braun and Clarke’s six-stage thematic analysis. Trustworthiness was maintained through triangulation, member checking, peer debriefing, reflective notes, and an audit trail.
Results: Five themes were identified: emotional adaptation from shock to acceptance; reorganization of family roles and daily routines; financial, geographical, and service-related barriers; inconsistent partnership with healthcare professionals; and resilience supported by spirituality and social relationships. Parents valued clear information, respectful communication, practical education, emotional support, and participation in treatment decisions. Referral outside Baubau increased transportation costs, income loss, and separation from other family members.
Conclusion: Caring for children with chronic illnesses affects the entire family and requires sustained professional and social support. Healthcare facilities should strengthen culturally responsive family-centered care through shared decision-making, caregiver education, psychological and spiritual support, peer-support groups, and coordinated referral services.
Downloads
References
Ahmad, M., van den Broeke, J., Saharso, S., & Tonkens, E. (2022). Dementia care-sharing and migration: An intersectional exploration of family carers’ experiences. Journal of Aging Studies, 60, 100996. https://doi.org/https://doi.org/10.1016/j.jaging.2021.100996
Akhter-Khan, S. C., Chua, K.-C., Al Kindhi, B., Mayston, R., & Prina, M. (2023). Unpaid productive activities and loneliness in later life: Results from the Indonesian Family Life Survey (2000–2014). Archives of Gerontology and Geriatrics, 105, 104851. https://doi.org/https://doi.org/10.1016/j.archger.2022.104851
Chow, E., Virani, A., Pinkney, S., Abdulhussein, F. S., van Rooij, T., Görges, M., Wasserman, W., Bone, J., Longstaff, H., & Amed, S. (2024). Caregiver and Youth Characteristics That Influence Trust in Digital Health Platforms in Pediatric Care: Mixed Methods Study. Journal of Medical Internet Research, 26. https://doi.org/https://doi.org/10.2196/53657
Cunningham, C., Conway, J., Zahoui, Z., Haykowsky, M., & Scott, S. D. (2024). Exploring Caregiver Learning and Experiences Caring for a Child With Heart Failure: A Qualitative Study. CJC Pediatric and Congenital Heart Disease, 3(4), 152–160. https://doi.org/https://doi.org/10.1016/j.cjcpc.2024.05.003
Djurijanto, F., Lin, S.-H., Vo, N.-P., Le, N. Q. K., Nguyen-Hoang, A., Shen, S.-C., Wu, C.-H., Chen, J.-Y., & Nguyen, N. T. K. (2024). Prevalence and determinants of constipation in children in Asia: a systematic review and meta-analysis. EClinicalMedicine, 71, 102578. https://doi.org/https://doi.org/10.1016/j.eclinm.2024.102578
Goerigk, S., Elsaesser, M., Reinhard, M. A., Kriston, L., Härter, M., Hautzinger, M., Klein, J. P., McCullough, J. P., Schramm, E., & Padberg, F. (2024). Childhood Trauma Questionnaire-based child maltreatment profiles to predict efficacy of the Cognitive Behavioral Analysis System of Psychotherapy versus non-specific psychotherapy in adults with early-onset chronic depression: cluster analysis of data from a randomised controlled trial. The Lancet Psychiatry, 11(9), 709–719. https://doi.org/https://doi.org/10.1016/S2215-0366(24)00209-8
Hintermeier, M., Gottlieb, N., Rohleder, S., Oppenberg, J., Baroudi, M., Pernitez-Agan, S., Lopez, J., Flores, S., Mohsenpour, A., Wickramage, K., & Bozorgmehr, K. (2024). COVID-19 among migrants, refugees, and internally displaced persons: systematic review, meta-analysis and qualitative synthesis of the global empirical literature. EClinicalMedicine, 74, 102698. https://doi.org/https://doi.org/10.1016/j.eclinm.2024.102698
Kanga-Parabia, A., Mitchell, L., Smyth, R., Kapoor, T., Duggal, J., Pearn, A., Williams, R., Courtney, E., Edwards, E., Bowman, M., Belekar, M., Nisselle, A., Pearn, A., Kanga-Parabia, A., Lundie, B., Wong, C., Health, N. S. W., Gaff, C., Genomics, A., … Nisselle, A. (2024). Genetic counseling workforce diversity, inclusion, and capacity in Australia and New Zealand. Genetics in Medicine Open, 2, 101848. https://doi.org/https://doi.org/10.1016/j.gimo.2024.101848
López-Arteaga, T., Moreno-Rubio, C., & Mohedano-Moriano, A. (2023). Risk factors for opioid addiction in chronic non-cancer pain. Heliyon, 9(9), e19707. https://doi.org/https://doi.org/10.1016/j.heliyon.2023.e19707
Lysak, D., Ali, S., Neufeld, S., & Scott, S. D. (2024). Children with medical complexity in the emergency department: Parent experiences and information needs. International Emergency Nursing, 77, 101532. https://doi.org/https://doi.org/10.1016/j.ienj.2024.101532
Mackie, A. S., Tulli-Shah, M., Chappell, A., Kariwo, M., Ibrahim, S., & Salami, B. (2024). Barriers and facilitators to transition from pediatric to adult healthcare for immigrant youth with chronic health conditions. Journal of Pediatric Nursing, 77, e487–e494. https://doi.org/https://doi.org/10.1016/j.pedn.2024.05.014
Mestre, T. D., Lopes, M. J., Mestre, D. M., Ferreira, R. F., Costa, A. P., & Caldeira, E. V. (2024). Impact of family-centered care in families with children with intellectual disability: A systematic review. Heliyon, 10(7), e28241. https://doi.org/https://doi.org/10.1016/j.heliyon.2024.e28241
Morris, M. C., Bruehl, S., Rao, U., Goodin, B. R., Karlson, C., Carter, C., Nag, S., Huber, F. A., Bendinskas, K. G., Hidoyatov, M., Kinney, K., Rochelle, A., & Funches, G. (2024). Biobehavioral Predictors of Pain Intensity, Pain Interference, and Chronic Pain Episodes: A Prospective Cohort Study of African-American Adults. The Journal of Pain, 25(8), 104501. https://doi.org/https://doi.org/10.1016/j.jpain.2024.02.015
Nassar, O., Alshahwan, S., Alshahwan, R., Halasa, S., Alashhab, S., & Alnajar, M. (2023). Determinants of Parents’ Knowledge, Attitudes, and Practice toward Childhood Vaccination: A National Study. The Open Nursing Journal, 17. https://doi.org/https://doi.org/10.2174/18744346-v17-230223-2022-88
Nowland, R., Thomson, G., Cross, L., Whittaker, K., Gregory, P., Charles, J. M., & Day, C. (2023). Exploring blog narratives of parental loneliness: A thematic network analysis. Current Research in Behavioral Sciences, 5, 100137. https://doi.org/https://doi.org/10.1016/j.crbeha.2023.100137
Noyek, S., Lund, T., Jordan, A., Hoppe, T., Mitchell, R., Mitchell, R., Stinson, J., & Noel, M. (2023). Exploring the Lived Experiences of Pain in Military Families: A Qualitative Examination. The Journal of Pain, 24(12), 2340–2351. https://doi.org/https://doi.org/10.1016/j.jpain.2023.07.016
O’Mahony, J., Bernstein, C. N., & Marrie, R. A. (2024). Adverse childhood experiences and psychiatric comorbidity in multiple sclerosis, inflammatory bowel disease, and rheumatoid arthritis in the Canadian longitudinal study on aging. Journal of Psychosomatic Research, 187, 111893. https://doi.org/https://doi.org/10.1016/j.jpsychores.2024.111893
Patton, M., Carlson, L. E., Noel, M., Palermo, T., Forster, V., Cho, S., & Schulte, F. (2023). Internet-Delivered Cognitive Behavioral Treatment for Chronic Pain in Adolescent Survivors of Childhood Cancer: Protocol for a Single-Group Feasibility Trial. JMIR Research Protocols, 12. https://doi.org/https://doi.org/10.2196/45804
Patty, N. J. S., van Meeteren, K. M., Verdonk, M., Ketelaar, M., Schuengel, C., & Willemen, A. M. (2024). Conceptualizing burnout from the perspective of parents of children with complex care needs. PEC Innovation, 5, 100325. https://doi.org/https://doi.org/10.1016/j.pecinn.2024.100325
Rahabi, H., Givony, M., Demaret, B., Albarel, F., Aubron, M.-R., Bartès, B., Bernard, L., Abdoul, H., Bouazza, N., Brun, P., Drui, D., Dujardin, V., Lançon, C., Malivoir, S., Netchine, I., Perrotin, B., Picard, V., Reynaud, R., Ribeiro, M., … Brue, T. (2024). The experience of diagnosis announcement in rare endocrine diseases: A survey of the French FIRENDO network. Annales d’Endocrinologie, 85(1), 27–35. https://doi.org/https://doi.org/10.1016/j.ando.2023.10.008
Sangngam, J., Prasopkittikun, T., Nookong, A., Pacharn, P., & Chamchan, C. (2023). Causal relationships among self-management behaviors, symptom control, health-related quality of life and the influencing factors among Thai adolescents with asthma. International Journal of Nursing Sciences, 10(3), 309–317. https://doi.org/https://doi.org/10.1016/j.ijnss.2023.06.001
Supadmi, S., Laksono, A. D., Kusumawardani, H. D., Ashar, H., Nursafingi, A., Kusrini, I., & Musoddaq, M. A. (2024). Factor related to stunting of children under two years with working mothers in Indonesia. Clinical Epidemiology and Global Health, 26, 101538. https://doi.org/https://doi.org/10.1016/j.cegh.2024.101538
Wattanatchariya, K., Narkpongphun, A., & Kawilapat, S. (2024). The relationship between parental adverse childhood experiences and parenting behaviors. Acta Psychologica, 243, 104166. https://doi.org/https://doi.org/10.1016/j.actpsy.2024.104166
Widyaratne, A., & Bally, J. M. G. (2024). Utilization of the Keeping Hope Possible Toolkit with parents of children with life limiting and life threatening illnesses during the COVID-19 pandemic: Exploring pediatric nurses and allied healthcare provider opinions. Journal of Pediatric Nursing, 77, e177–e186. https://doi.org/https://doi.org/10.1016/j.pedn.2024.04.008
Young, M. A., Boerner, K. E., Marshall, S., Dhariwal, A., & Coelho, J. S. (2024). Exploring Family Care Journeys to Inform Cognitive-Behavioral Therapy for Avoidant/Restrictive Food Intake Disorder and Somatic Symptom Disorders. Cognitive and Behavioral Practice, 31(3), 356–366. https://doi.org/https://doi.org/10.1016/j.cbpra.2024.01.002
Zhang, A., Zheng, X., Shen, Q., Zhang, Q., & Leng, H. (2023). Family management experience of parents of children with chronic heart failure: A qualitative study. Journal of Pediatric Nursing, 73, e36–e42. https://doi.org/https://doi.org/10.1016/j.pedn.2023.07.006
Downloads
Published
How to Cite
Issue
Section
License
This work is licensed under a Creative Commons Attribution-ShareAlike 4.0 International License.
