“I need everybody to understand that he's a whole child”: A mixed-methods study exploring caregivers' experiences with their children with medical complexities

IF 2.1 4区医学 Q2 NURSING

Journal of Pediatric Nursing-Nursing Care of Children & Families Pub Date : 2025-02-06 DOI:10.1016/j.pedn.2025.01.025

Emily J. Jensen , Sarah N. Douglas , Sarah Khan , Katharine Bullock

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引用次数: 0

Abstract

Purpose

Children with medical complexities (CMC) access medical care at high rates and rely heavily on caregivers for daily care. Little research has explored the medical care experiences of caregivers of CMC to understand the holistic impact on the caregiver and their children. The goal of this study was to understand the experiences and challenges faced by CMC and their caregivers, explore the impact of COVID-19 on this population, and highlight the suggestions caregivers have to improve medical care for their children.

Design and methods

We conducted an explanatory sequential mixed method study utilizing surveys (n = 149) and in-depth interviews (n = 26) with a subset of survey participants. Descriptive and inferential quantitative analysis strategies as well as qualitative thematic and content analysis techniques were used to analyze the survey and interview data.

Results

Our findings included insights such as the frequent need to access medical care/specialists, the demand and emotional process of caring for CMC, the risk of pediatric medical trauma and stress, the unique impact of COVID-19 on this population, challenges navigating medical insurance, and the impact of the medical provider and system qualities on overall experiences. We also had findings related to the personal challenges associated with caregiving for CMC, caregiver coping and advocacy, and suggestions for improving care for CMC.

Conclusions

These findings suggest a need for improved practices and policies to support CMC and their families.

Practice implications

This study identifies opportunities for healthcare professionals to learn from the experiences of caregivers of CMC.

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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.