Social support and family resources influence workload and capacity in parents of children with medical complexity

IF 2.1 4区医学 Q2 NURSING

Journal of Pediatric Nursing-Nursing Care of Children & Families Pub Date : 2025-01-21 DOI:10.1016/j.pedn.2025.01.010

Patricia R. Lawrence PhD, RN, CPNP-AC/PC, Melissa Spezia Faulkner PhD, RN, FAAN, Regena Spratling PhD, RN, APRN, CPNP-PC, FAANP, FAAN

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引用次数: 0

Abstract

Purpose

Research examining factors that impact parents of children with medical complexity (CMC) who also have critical congenital heart disease (CCHD) is limited. We examined relationships among family resources and social support, and how these influence parents' workload and capacity to care for their CMC with CCHD.

Methods

A non-experimental, cross-sectional design was conducted in a national sample of 106 parents of CMC with CCHD. Measures of family resources, social support, workload and capacity to care for these children were analyzed using correlation and multiple regression.

Results

The majority of CMC (40.6 %) had between 1 and 3 health conditions requiring an average of 5 daily medications, and 2 medical technologies. Parents reported a mean of 72.25 weekly hours to care for their CMC, and a mean of 8.57 weekly hours to coordinate care. Higher family resources were associated with less workload (r = − 0.47, p < .001) and increased capacity (r = 0.54, p < .001), while more social support was associated with higher capacity (r = 0.44, p < .001). Decreased capacity was associated with increased workload (r = − 0.33, p < .001). Social support and family resources accounted for 24.5 % of the variance in workload and accounted for 30.1 % of the variance in capacity.

Conclusions

Fewer resources, less social support, and less perceived capacity were associated with more perceived parental workload to care for their CMC with CCHD.

Practice implications

Results emphasize the importance of universal screening for social support and family resources.

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社会支持和家庭资源影响医疗复杂性儿童父母的工作量和能力。

目的：研究影响重症先天性心脏病（CCHD）患儿父母的因素是有限的。我们研究了家庭资源和社会支持之间的关系，以及这些因素如何影响父母照顾患有CCHD的CMC的工作量和能力。方法：采用非实验的横断面设计，对全国106例CMC合并CCHD的父母进行抽样调查。采用相关分析和多元回归分析家庭资源、社会支持、工作量和照顾这些儿童的能力。结果：大多数CMC（40.6%）有1 ~ 3种健康状况，平均每天需要5次药物治疗，需要2种医疗技术。父母报告平均每周72.25小时照顾他们的CMC，平均每周8.57小时协调照顾。结论：资源较少、社会支持较少和感知能力较差与感知父母照顾CCHD患儿的工作量增加相关。实践意义：结果强调了对社会支持和家庭资源进行普遍筛查的重要性。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Journal of Pediatric Nursing-Nursing Care of Children & Families NURSING-PEDIATRICS

CiteScore

3.70

自引率

8.30%

发文量

291

审稿时长

65 days

期刊介绍： Official Journal of the Society of Pediatric Nurses and the Pediatric Endocrinology Nursing Society (PENS) The Journal of Pediatric Nursing: Nursing Care of Children and Families (JPN) is interested in publishing evidence-based practice, quality improvement, theory, and research papers on a variety of topics from US and international authors. JPN is the official journal of the Society of Pediatric Nurses and the Pediatric Endocrinology Nursing Society. Cecily L. Betz, PhD, RN, FAAN is the Founder and Editor in Chief. Journal content covers the life span from birth to adolescence. Submissions should be pertinent to the nursing care needs of healthy and ill infants, children, and adolescents, addressing their biopsychosocial needs. JPN also features the following regular columns for which authors may submit brief papers: Hot Topics and Technology.