脊髓性肌萎缩症患儿父母的情绪体验：一项定性研究。

IF 2.1 4区医学 Q2 NURSING

Journal of Pediatric Nursing-Nursing Care of Children & Families Pub Date : 2025-01-01 DOI:10.1016/j.pedn.2024.11.027

Didem Coşkun Şimşek Associate professor , Kerime Deniz Kiliç Çetin

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引用次数: 0

摘要

背景：脊髓性肌萎缩症的终身强化治疗和护理过程可能导致患儿和家长的生活质量下降。本研究的目的是在现象学设计的框架内检查患有脊髓性肌萎缩症的孩子的父母的情绪。方法：采用现象学方法进行研究。该研究于2022年8月至2024年4月期间在一所大学医院儿科病房接受脊髓性肌萎缩症治疗的儿童的父母中进行。采用目的抽样法，对11名家长进行了访谈。访谈采用半结构化问卷，并对访谈内容进行录音。数据分析采用归纳主题性分析方法。本研究按照COREQ检查表进行。研究发现：参与研究的儿童中，年龄在0 - 1岁之间诊断为脊髓性肌萎缩症的占54.54%，0 - 6个月之间诊断为72.72%，其中54.54%为1型脊髓性肌萎缩症患者。由于采用主题分析法，形成了5个主要主题和10个次级主题。这些都是;(1)无助感（不得不接受的无助感，不能抽出时间的无助感），(2)不安感（对疾病症状感到不安，感觉被误解，对自己健康的孩子感到悲伤），(3)压力（由于密集而疲惫的治疗和护理过程而产生的压力，由于经济状况而产生的压力），(4)恐惧感（害怕死亡，害怕未来怀孕），(5)不快乐感（对不断变化的生活条件感到不满）。讨论：据观察，孩子患有脊髓性肌萎缩症的父母会遇到情感上的挑战。应用于实践：了解父母的观点可以使医疗保健专业人员更好地理解父母照顾脊髓性肌萎缩症儿童的负面情绪体验。这种理解可以指导制定有针对性的战略，提供全面的心理支持，以改善父母的心理健康结果。提高医疗保健专业人员和更广泛的社会的认识，有助于采取更加知情和同情的方法来解决脊髓性肌萎缩症儿童及其家庭面临的挑战，提高所提供的护理和支持的质量。

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Emotions experienced by parents whose children have spinal muscular atrophy: A qualitative research

Background

The lifelong and intensive treatment and care process of Spinal Muscular Atrophy may cause a decrease in the life quality of the child and the parents. This study aims to examine the emotions of parents who have a child with Spinal Muscular Atrophy within the framework of a phenomenological design.

Methods

This study was conducted with a phenomenological design. The study was carried out between August 2022 and April 2024 with the parents of children treated for Spinal Muscular Atrophy in the pediatric ward of a university hospital. Using a purposive sampling method, 11 parents were involved in interviews. A semi-structured questionnaire was employed during the interviews, and all the interviews were audio recorded. The data analysis done by applying the inductive thematic analysis method. The study was carried out according to the COREQ checklist.

Findings

It was found that 54.54 % of the children who participated in the study were diagnosed with Spinal Muscular Atrophy between the ages of 0 and 1 year, 72.72 % between 0 and 6 months, and 54.54 % were Spinal Muscular Atrophy TYPE 1 patients. As a result of thematic analysis method, five main and ten sub-themes had emerged. These are; (1) helplessness (helplessness of having to accept, helplessness of not being able to spare time), (2) being upset (being upset about the symptoms of the disease, feeling misunderstood, sadness about their healthy children), (3) stress (stress due to the intensive and exhausting treatment and care process, stress due to the economic situation), (4) fear (fear of death, fear of future pregnancies), (5) unhappiness (being unhappy with the changing living conditions).

Discussion

It was observed that parents who have a child with Spinal Muscular Atrophy experience emotional challenges.

Application to practice

Gaining insights into the perspectives of parents can enable healthcare professionals to better understand the negative emotional experiences of parents caring for children with Spinal Muscular Atrophy. Such understanding may guide the development of targeted strategies to provide comprehensive psychological support aimed at improving parental mental health outcomes. Increasing awareness among healthcare professionals and the broader society fosters a more informed and empathetic approach to addressing the challenges faced by children with Spinal Muscular Atrophy and their families, enhancing the quality of care and support provided.

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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.