Yun Hye-Jung, Parker M L, Wilson Cynthia B, Cui Ming
The Florida Center for Prevention Research, Florida State University, Tallahassee, FL 32301, USA.
School of Education and Human Development, Fairfield University, Fairfield, CT 06824, USA.
Children (Basel). 2024 Jun 27;11(7):775. doi: 10.3390/children11070775.
The rising prevalence of CSHCN has led to significant challenges for caregivers, particularly mothers, who face difficulties from caregiving demands and managing complex healthcare interactions. The objective of this study was to examine the association between the medical complexity of CSHCN and the healthcare experiences of their mothers while exploring the influence of sociodemographic factors on these associations. The study utilized data from the 2016-2020 National Survey of Children's Health (NSCH), involving 17,434 mothers of CSHCN. Mothers provided information on the medical complexity of CSHCN, healthcare experiences (care coordination, family-centered care, and shared decision-making), and sociodemographic information (race, community, insurance, child sex, age, and federal poverty level). Results from multiple regressions revealed that greater medical complexity was associated with more negative healthcare experiences. Minoritized mothers, those in rural areas, and families with lower income reported lower levels of family-centered care, indicating significant disparities. Additionally, the negative association between medical complexity and healthcare experiences was pronounced for White families and those with private insurance compared to minoritized families and those with public insurance. This study highlights the necessity for targeted interventions to improve care coordination, family-centered care, and shared decision-making, emphasizing the need for a comprehensive, family-centered approach to address healthcare disparities and promote health equity for CSHCN and their families.
患有慢性疾病、特殊健康需求的儿童（CSHCN）患病率的上升给照料者，尤其是母亲带来了重大挑战，她们在应对照料需求和处理复杂的医疗互动方面面临困难。本研究的目的是探讨CSHCN的医疗复杂性与其母亲的医疗经历之间的关联，同时探究社会人口学因素对这些关联的影响。该研究使用了2016 - 2020年全国儿童健康调查（NSCH）的数据，涉及17434名CSHCN的母亲。母亲们提供了有关CSHCN的医疗复杂性、医疗经历（护理协调、以家庭为中心的护理和共同决策）以及社会人口学信息（种族、社区、保险、孩子性别、年龄和联邦贫困水平）。多元回归结果显示，更高的医疗复杂性与更负面的医疗经历相关。少数族裔母亲、农村地区的母亲以及低收入家庭报告的以家庭为中心的护理水平较低，这表明存在显著差异。此外，与少数族裔家庭和有公共保险的家庭相比，白人家庭和有私人保险的家庭中，医疗复杂性与医疗经历之间的负相关更为明显。本研究强调了有针对性干预措施的必要性，以改善护理协调、以家庭为中心的护理和共同决策，强调需要采取全面的、以家庭为中心的方法来解决医疗差距，促进CSHCN及其家庭的健康公平。
