Research Group in Evaluation and Assessment of Capacity, Functionality and Disability of Universidad Rey Juan Carlos (TO+IDI), Department of Physical Therapy, Occupational Therapy, Physical Medicine and Rehabilitation, Universidad Rey Juan Carlos, 28922 Alcorcón, Spain.
Research Group of Humanities and Qualitative Research in Health Science of Universidad Rey Juan Carlos (Hum&QRinHS), Department of Physical Therapy, Occupational Therapy, Physical Medicine and Rehabilitation, Universidad Rey Juan Carlos, 28922 Alcorcón, Spain.
Int J Environ Res Public Health. 2022 Aug 24;19(17):10524. doi: 10.3390/ijerph191710524.
(1) Background: Phelan-McDermid Syndrome (PMS) in children causes significant challenges affecting social and family relationships. The purpose of this study was to explore the experience of parents with children diagnosed with PMS regarding interactions with their social environment; (2) Methods: A qualitative descriptive study was conducted. Participants were recruited using non-probabilistic purposeful sampling. In total, 32 parents of children with PMS were included. In-depth interviews and researchers' field notes were used to collect the data. An inductive thematic analysis was performed; (3) Results: Five themes were identified: (a) challenges in the relationship as a couple; (b) challenges within the family and close social relationships; (c) challenges in the educational-school environment; (d) challenges in the health environment and with health professionals, and (e) reconnection through the PMS association. It would be beneficial for parents to create training programs on PMS in the educational and healthcare settings, to promote the participation of professionals in the PMS association and to develop care programs focusing in their physical, psychological and social health.
(1) 背景：儿童患佩兰-麦克德米德综合征（PMS）会对社交和家庭关系造成重大影响。本研究旨在探索患有 PMS 的儿童的父母在与社交环境互动时的体验；
(2) 方法：本研究采用定性描述性研究方法。使用非概率目的抽样招募参与者。共纳入 32 名患有 PMS 的儿童的父母。采用深入访谈和研究者的现场记录收集数据。采用归纳主题分析；
(3) 结果：确定了五个主题：(a) 夫妻关系中的挑战；(b) 家庭和亲密社交关系中的挑战；(c) 教育-学校环境中的挑战；(d) 健康环境和与健康专业人员的挑战，以及(e) 通过 PMS 协会重新建立联系。在教育和医疗保健环境中为父母创建关于 PMS 的培训计划，促进专业人员参与 PMS 协会以及制定关注他们身心健康的关怀计划将是有益的。
