Other Titles
Children and Youth with Special Health Care Needs: Theoretical Frameworks with Religion and Spirituality Effects on QOL [Poster Title]
Abstract
Background: There are 14 million U.S. children with a special health care need. Children and Youth with Special Health Care Needs (CYSHCN) are a broad, unique subgroup of children with diverse experiences with medical, psychosocial, and behavioral challenges. Children rating themselves as being more spiritual, but not religious, rated themselves as happier compared to children who were less spiritual. However, quality of life (QoL) scores are lower for CYSHCN. Factors influencing QoL for CYSHCN and their caregivers are incompletely understood. Religion and spirituality for CYSHCN and their caregivers impacting QoL is understudied. Research on QoL with theorical frameworks in this unique pediatric population is limited.
Purpose: The purpose of this paper is to identify theoretical frameworks for use with pediatric QoL and the impacts of religion and spirituality.
Methods: A literature search with key words included: CYSHCN, children with disabilities, disabled children, children with special needs, children with medical complexity, and quality of life, well-being, religion, spirituality, and family quality of life. The databases searched included PubMed, Academic Search Complete, CINAL, and ERIC. Studies in English published since 2000 with 330 studies identified. Only 1 study was identified with a theoretical framework for pediatric QoL and Religion and Spirituality.
Results: The Family Quality of Life (FQoL) theoretical framework was identified as the most appropriate. It considers the wellbeing of each family member, as the entire family unit and the CYSHCN families who rated themselves as being more religious rated their FQoL scores higher and satisfaction scores with the FQoL were higher compared to secular families.
Conclusion: Evidence shows religion and spirituality are important contributors to QoL but their connection to CYSHCN and FQoL are not well elucidated. Very few studies examine religion and spirituality on QoL with children. Encouraging spiritual or religious growth in families with CYSHCN may have a positive impact on their QoL. As health care personnel who work with CYSHCN and caregivers, nurses may be in a unique position to encourage spiritual support for families. Nurses may also aid in translating knowledge of FQoL framework into implementation to help support QoL for CYSHCN. More studies are needed examining the impact of spirituality and religion on QoL with CYSHCN.
Notes
References:
Balboni, T. A., VanderWeele, T. J., Doan-Soares, S. D., Long, K. N. G., Ferrell, B. R., Fitchett, G., Koenig, H. G., Bain, P. A., Puchalski, C., Steinhauser, K. E., Sulmasy, D. P., & Koh, H. K. (2022). Spirituality in serious illness and health. JAMA, 328(2), 184–197. https://doi.org/10.1001/jama.2022.11086
Ghandour, R.M., Hirai, A.H., Kenney, M.K. (2022). Children and youth with special health care needs: A profile. Pediatrics, 149(7), S1-S17 (supplement). https://doi.org/10.1542/peds.2021-056150D
Holder, M. D., Coleman, B., & Wallace, J. M. (2010). Spirituality, religiousness, and happiness in children aged 8–12 years. Journal of Happiness Studies, 11(2), 131–150. https://doi.org/10.1007/s10902-008-9126-1
Taub, T., & Werner, S. (2016). What support resources contribute to family quality of life among religious and secular Jewish families of children with developmental disability? Journal of Intellectual and Developmental Disability, 41(4), 348–359. https://doi.org/10.3109/13668250.2016.1228859
Panzini, R. G., Mosqueiro, B. P., Zimpel, R. R., Bandeira, D. R., Rocha, N. S., & Fleck, M. P. (2017). Quality-of-life and spirituality. International review of psychiatry, 29(3), 263–282. https://doi.org/10.1080/09540261.2017.1285553
Zuna N., Summers J.A., Turnbull A.P., Hu X., & Xu S. (2010). Theorizing about family quality of life. In Kober. R (Eds.), Enhancing the Quality of Life of People with Intellectual Disabilities: from theory to practice (1 st ed.) (241-278). Springer; Dordrecht, The Netherlands. https://doi.org/10.1007/978-90-481-9650-0
Sigma Membership
Pi Alpha
Type
Poster
Format Type
Text-based Document
Study Design/Type
Literature Review
Research Approach
Translational Research/Evidence-based Practice
Keywords:
Stress and Coping, Special Needs Children, Unique Populations, Religion, Spirituality, Quality of Life
Recommended Citation
Dankanich, Julia, "CYSHCN: Religion and Spirituality with QoL Theoretical Frameworks, Translating Knowledge" (2025). Biennial Convention (CONV). 49.
https://www.sigmarepository.org/convention/2025/posters_2025/49
Conference Name
48th Biennial Convention
Conference Host
Sigma Theta Tau International
Conference Location
Indianapolis, Indiana, USA
Conference Year
2025
Rights Holder
All rights reserved by the author(s) and/or publisher(s) listed in this item record unless relinquished in whole or part by a rights notation or a Creative Commons License present in this item record. All permission requests should be directed accordingly and not to the Sigma Repository. All submitting authors or publishers have affirmed that when using material in their work where they do not own copyright, they have obtained permission of the copyright holder prior to submission and the rights holder has been acknowledged as necessary.
Review Type
Abstract Review Only: Reviewed by Event Host
Acquisition
Proxy-submission
Date of Issue
2025-12-04
CYSHCN: Religion and Spirituality with QoL Theoretical Frameworks, Translating Knowledge
Indianapolis, Indiana, USA
Background: There are 14 million U.S. children with a special health care need. Children and Youth with Special Health Care Needs (CYSHCN) are a broad, unique subgroup of children with diverse experiences with medical, psychosocial, and behavioral challenges. Children rating themselves as being more spiritual, but not religious, rated themselves as happier compared to children who were less spiritual. However, quality of life (QoL) scores are lower for CYSHCN. Factors influencing QoL for CYSHCN and their caregivers are incompletely understood. Religion and spirituality for CYSHCN and their caregivers impacting QoL is understudied. Research on QoL with theorical frameworks in this unique pediatric population is limited.
Purpose: The purpose of this paper is to identify theoretical frameworks for use with pediatric QoL and the impacts of religion and spirituality.
Methods: A literature search with key words included: CYSHCN, children with disabilities, disabled children, children with special needs, children with medical complexity, and quality of life, well-being, religion, spirituality, and family quality of life. The databases searched included PubMed, Academic Search Complete, CINAL, and ERIC. Studies in English published since 2000 with 330 studies identified. Only 1 study was identified with a theoretical framework for pediatric QoL and Religion and Spirituality.
Results: The Family Quality of Life (FQoL) theoretical framework was identified as the most appropriate. It considers the wellbeing of each family member, as the entire family unit and the CYSHCN families who rated themselves as being more religious rated their FQoL scores higher and satisfaction scores with the FQoL were higher compared to secular families.
Conclusion: Evidence shows religion and spirituality are important contributors to QoL but their connection to CYSHCN and FQoL are not well elucidated. Very few studies examine religion and spirituality on QoL with children. Encouraging spiritual or religious growth in families with CYSHCN may have a positive impact on their QoL. As health care personnel who work with CYSHCN and caregivers, nurses may be in a unique position to encourage spiritual support for families. Nurses may also aid in translating knowledge of FQoL framework into implementation to help support QoL for CYSHCN. More studies are needed examining the impact of spirituality and religion on QoL with CYSHCN.
Description
Children and youth with special health care needs (CYSHCN) encompass a unique subgroup with diverse experiences. Factors influencing QoL for CYSHCN and their caregivers, including the impact of religion and spirituality, are understudied. The Family Quality of Life (FQoL) theoretical framework is one appropriate theoretical framework for pediatric QoL and religion/spirituality. In their care for CYSHCN and families, nurses can expand upon this framework to encourage improvements in QoL and FQoL.