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

被引：0

作者：

Materula, Dercia ^{[1
]}

Currie, Genevieve ^{[1
,2
]}

Jia, Xiao Yang ^{[1
]}

Finlay, Brittany ^{[1
]}

Lau, Ai-Men ^{[1
]}

Richard, Catherine ^{[3
]}

Yohemas, Meridith ^{[3
]}

Estes, Myka ^{[3
]}

Gall, Nadine ^{[3
]}

Dewan, Tammie ^{[3
]}

MacEachern, Sarah ^{[3
,4
]}

Ben Gibbard, W. ^{[3
,4
]}

Zwicker, Jennifer D. ^{[1
,5
]}

机构：

[1] Univ Calgary, Sch Publ Policy, Calgary, AB, Canada

[2] Mt Royal Univ, Sch Nursing & Midwifery, Calgary, AB, Canada

[3] Alberta Hlth Serv, Calgary, AB, Canada

[4] Univ Calgary, Cumming Sch Med, Dept Pediat, Calgary, AB, Canada

[5] Univ Calgary, Fac Kinesiol, Calgary, AB, Canada

来源：

RESEARCH IN DEVELOPMENTAL DISABILITIES | 2024年 / 153卷

基金：

加拿大健康研究院;

关键词：

Neurodevelopmental disabilities; Medical complexity; Children; Caregivers; Carecoordination; Quality of life; Resource utilization; QUALITY-OF-LIFE; CARE; DISABILITIES; FAMILIES;

D O I：

10.1016/j.ridd.2024.104815

中图分类号：

G76 [特殊教育];

学科分类号：

040109 ;

摘要：

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.

引用

页数：22

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