评估爱尔兰罕见疾病儿童父母的支持性护理需求。

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.2025.01.003

Suja Somanadhan , Helen McAneney , Atif Awan , Sandra McNulty , Alison Sweeney , Niamh Buckle , Shannon Sinnott , Shirley Bracken , Amy Jayne McKnight , Thilo Kroll , Lemuel J. Pelentsov

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引用次数: 0

摘要

目的：罕见病个别不常见，但集体流行。爱尔兰有超过30万人受到影响，其中50- 70%是儿童。本研究利用经过验证的罕见疾病父母需求量表（PNS-RD），探讨了爱尔兰父母照顾罕见疾病儿童的支持性护理需求。设计和方法：本描述性定量研究采用调查技术来评估父母的支持需求。从2021年8月到2021年12月，使用Qualtrics™平台对爱尔兰各地的父母进行了一项在线调查。结果：在107名同意的参与者中，89名提供了适合分析的数据。调查结果揭示了重大挑战，儿童平均每年去医院6次；77%的家庭表示有特殊教育需要，42%的家庭需要复杂的医疗护理。PNS-RD量表的平均值为M = 48.62 （95% CI: 44.5-52.7)，包括四个维度（每个维度在25分中得分）：i）了解疾病（M = 9.01, 95% CI: 7.5-10.5）， ii)与卫生专业人员合作（M = 13.68, 95% CI: 12.0-15.4）， iii)情绪问题（M = 13.22, 95% CI: 12.0-14.5）， iv)财务需求（M = 12.94, 95% CI: 11.2-14.6）。父母表现出对照顾孩子的信心，但也报告了相当大的情绪压力和经济挑战。结论：虽然父母普遍对处理孩子的罕见疾病有信心，并对所得到的照顾和支持感到满意，但情感、心理和经济上的代价仍然很高。实践启示：本研究强调了迫切需要全面的支持系统来减轻这些负担，倡导量身定制的医疗保健和社会支持干预措施，以满足这些家庭的不同需求。

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Assessing the supportive care needs of parents of children with rare diseases in Ireland

Purpose

Rare diseases are individually uncommon yet collectively prevalent. They affect over 300,000 people in Ireland, with 50–70 % impacting children. This study explores the supportive care needs of parents caring for children with rare diseases in Ireland, utilising a validated Parental Needs Scale for Rare Diseases (PNS-RD).

Design and methods

This descriptive quantitative study employed survey techniques to assess parental support needs. An online survey was administered to parents across Ireland from August 2021 to December 2021 using the Qualtrics™ platform.

Results

Out of 107 consented participants, 89 provided data suitable for analysis. Findings revealed significant challenges, with children averaging six hospital visits per year; 77 % of families indicated special education needs, and 42 % required medically complex care. The PNS-RD scale mean was M = 48.62 (95 % CI: 44.5–52.7), comprising four dimensions (each scored out of 25): i) Understanding the disease (M = 9.01, 95 % CI: 7.5–10.5), ii) Working with health professionals (M = 13.68, 95 % CI: 12.0–15.4), iii) Emotional issues (M = 13.22, 95 % CI: 12.0–14.5), and iv) Financial needs (M = 12.94, 95 % CI: 11.2–14.6). Parents demonstrated confidence in managing their child's care but reported considerable emotional strain and financial challenges.

Conclusion

While parents generally felt confident in handling their child's rare disease and were moderately satisfied with the care and support received, the emotional, psychological, and financial toll remained high.

Implications for practice

This study underscores the urgent need for comprehensive support systems to alleviate these burdens, advocating for tailored healthcare and social support interventions to meet the diverse needs of these families.

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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.