Şimşek Didem Coşkun, Çetin Kerime Deniz Kiliç
Fırat University, Faculty of Health Sciences, Department of Pediatric Nursing, Elazığ, Turkey.
Fırat University, Health Sciences Institute, Elazığ, Turkey.
J Pediatr Nurs. 2025 Jan-Feb;80:e111-e119. doi: 10.1016/j.pedn.2024.11.027. Epub 2024 Dec 6.
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.
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.
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).
It was observed that parents who have a child with Spinal Muscular Atrophy experience emotional challenges.
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.
脊髓性肌萎缩症漫长而密集的治疗和护理过程可能会导致患儿及其父母生活质量下降。本研究旨在采用现象学设计，探究患有脊髓性肌萎缩症患儿的父母的情绪。
本研究采用现象学设计。该研究于2022年8月至2024年4月期间，在一家大学医院儿科病房对接受脊髓性肌萎缩症治疗的患儿的父母进行。采用目的抽样法，11名父母参与了访谈。访谈期间使用了半结构化问卷，所有访谈均进行了录音。数据分析采用归纳主题分析法。该研究按照COREQ清单进行。
研究发现，参与研究的患儿中，54.54%在0至1岁之间被诊断为脊髓性肌萎缩症，72.72%在0至6个月之间，54.54%为1型脊髓性肌萎缩症患者。通过主题分析法，出现了五个主要主题和十个子主题。它们分别是：（1）无助感（不得不接受的无助感、无法抽出时间的无助感），（2）心烦意乱（对疾病症状感到心烦、感觉被误解、对自己健康孩子的悲伤），（3）压力（由于密集且疲惫的治疗和护理过程产生的压力、由于经济状况产生的压力），（4）恐惧（对死亡的恐惧、对未来怀孕的恐惧），（5）不幸福（对生活条件变化感到不幸福）。
观察到患有脊髓性肌萎缩症患儿的父母会经历情绪挑战。
深入了解父母的观点可以使医疗保健专业人员更好地理解照顾脊髓性肌萎缩症患儿的父母的负面情绪体验。这种理解可能会指导制定有针对性的策略，以提供全面的心理支持，旨在改善父母的心理健康状况。提高医疗保健专业人员和更广泛社会的认识，有助于形成更明智和富有同情心的方法来应对脊髓性肌萎缩症患儿及其家庭面临的挑战，提高所提供的护理和支持质量。
