Needs of children with neurodevelopmental disorders and medical complexity: Caregiver perspectives.

Autor: Materula D; School of Public Policy, University of Calgary, Calgary, Alberta, Canada., Currie G; School of Public Policy, University of Calgary, Calgary, Alberta, Canada; School of Nursing and Midwifery, Mount Royal University, Calgary, Alberta, Canada., Jia XY; School of Public Policy, University of Calgary, Calgary, Alberta, Canada., Finlay B; School of Public Policy, University of Calgary, Calgary, Alberta, Canada., Lau AM; School of Public Policy, University of Calgary, Calgary, Alberta, Canada., Richard C; Alberta Health Services, Calgary, Alberta, Canada., Yohemas M; Alberta Health Services, Calgary, Alberta, Canada., Estes M; Alberta Health Services, Calgary, Alberta, Canada., Gall N; Alberta Health Services, Calgary, Alberta, Canada., Dewan T; Alberta Health Services, Calgary, Alberta, Canada., MacEachern S; Alberta Health Services, Calgary, Alberta, Canada; Department of Pediatrics, Cumming School of Medicine, University of Calgary, Calgary, Alberta, Canada., Ben Gibbard W; Alberta Health Services, Calgary, Alberta, Canada; Department of Pediatrics, Cumming School of Medicine, University of Calgary, Calgary, Alberta, Canada., Zwicker JD; School of Public Policy, University of Calgary, Calgary, Alberta, Canada; Faculty of Kinesiology, University of Calgary, Calgary, Alberta, Canada. Electronic address: zwicker1@ucalgary.ca.
Jazyk: angličtina
Zdroj: Research in developmental disabilities [Res Dev Disabil] 2024 Oct; Vol. 153, pp. 104815. Date of Electronic Publication: 2024 Aug 13.
DOI: 10.1016/j.ridd.2024.104815
Abstrakt: Background: Caregivers of children with neurodevelopmental disorders and medical complexities (NDD-MC) coordinate care across complex multisectoral systems. Often NDD-MC children have complex behaviors, however there is limited information on coordination needs for families.
Aim: The objective of this mixed methods study was to understand the needs of families with NDD-MC children.
Methods and Procedures:  This sequential exploratory study obtained the perspectives of 67 caregivers of NDD-MC children using semi-structured interviews and validated questionnaires to measure family quality of life, care integration, and resource use. An adapted model using Maslow's hierarchy of needs was integrated, to understand the impacts of caregiving on quality of life.
Outcomes and Results: Lack of support in caring for NDD-MC children negatively impacted family quality of life, resulting in various unmet needs, including caregiver burden, behavioural challenges, financial losses, and mental health issues. Caregivers dealt with a fragmented healthcare system that offered limited support to address coordination challenges.
Conclusions and Implications: The implementation of a needs-based care coordination program is recommended to consider the health, educational, and social needs of NDD-MC children and their families. Effective care for children with complex needs should tailor support for families using Maslow's hierarchy to enhance quality of life.
Competing Interests: Declaration of Competing Interest The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.
(Copyright © 2024 The Authors. Published by Elsevier Ltd.. All rights reserved.)
Databáze: MEDLINE
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