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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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.