为神经发育障碍诊断后的父母/照顾者探讨参与WeCare项目后父母/照顾者的观点。

IF 2.3 4区 医学 Q2 PEDIATRICS
Elena Hatzis, Anoo Bhopti, Helen Bourke-Taylor
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引用次数: 0

摘要

背景:神经发育障碍儿童的父母在接受孩子的诊断时面临相当大的挑战,导致他们的健康、福祉和职业参与面临风险。WeCare项目是一个在线提供的以小组为基础、同伴支持的家长项目,旨在为诊断期间的家长提供支持。我们的计划侧重于改善家庭福祉,家庭生活质量和参与有意义的父母职业。本研究旨在调查参与该项目的家长的经历。方法:由2名职业治疗师和2名家长同伴辅导员进行为期2年的WeCare项目。采用质性研究设计,对完成WeCare项目的参与者进行半结构化访谈。采访是通过Zoom录制的。数据分析采用Braun和Clarke的反身性主题分析六步法。调查结果:7位家长(5位母亲和2位父亲)参与了调查。确定了四个主要主题:我的小组;清雾;积极的变化;以及对内容和交付的思考。大多数父母描述了参加WeCare项目后的共同经历,包括在面临类似挑战的父母群体中,归属感使他们感到不那么孤立;被鼓励考虑自我照顾和自己的幸福;对孩子的诊断和使用服务的能力的理解更有信心;并感谢专业和同伴辅导员的支持。福祉战略的实施受到结构性和个人因素的影响,突出了支持方面的系统性障碍。宝贵的反馈突出了对未来WeCare计划的建议,包括在计划结束和面对面会议之后需要持续的支持。结论:父母的经验证实,在接受残疾诊断的早期,WeCare项目提供了及时有效的支持,是对现有服务的补充,而不是取代。尽管需要更广泛的结构和政策改革来解决服务差距,但像我们的关爱计划这样的规划可以加强以家庭为中心的做法和父母的能力。职业治疗师可以透过专业课程,例如“职业护理”课程,加强对家长的支持,以配合每个家庭的独特需要。有必要继续发展和传播妇女保健,以加强公平获取和改善家庭成果。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Exploring parent/caregiver perspectives post participation in WeCare programme for parents/caregivers post neurodevelopmental disability diagnosis.

Background: Parents of children with neurodevelopmental disability face considerable challenges during the time of receiving their child's diagnosis, resulting in risks to their health, well-being and occupational participation. WeCare programme is a group-based, peer-supported parent programme delivered online, purposefully designed to support parents during the time of diagnosis. WeCare programme focuses on improving family well-being, family quality of life and engagement in meaningful parent occupations. This study aimed to investigate the experiences of parents who participated in the programme.

Methods: WeCare programme was delivered over 2 years by two occupational therapists and two parent peer-facilitators. A qualitative study design was employed using semistructured interviews with participants who completed the WeCare programme. Interviews were recorded via Zoom. Data was analysed using Braun and Clarke's six-step method of reflexive thematic analysis.

Findings: Seven parents (five mothers and two fathers) participated. Four major themes were identified: A Group for Me; Clearing the Fog; Positive Changes; and Reflections on Content and Delivery. The majority of parents described common experiences after attending the WeCare programme, including feeling less isolated by belonging in a group of parents facing similar challenges; being prompted to consider self-care and their own well-being; feeling more confident in their understanding of their child's diagnosis and ability to navigate services; and appreciating the support of professional and peer facilitators. Implementation of well-being strategies was influenced by structural and personal factors, highlighting systemic barriers to support. Valuable feedback highlighted suggestions for future WeCare programme including the need for ongoing support after the programmes' conclusion and face-to-face sessions.

Conclusions: Parents' experiences confirm that the WeCare programme provides timely and effective support during the early days of receiving a disability diagnosis, complementing existing services rather than replacing them. Programmes like WeCare can enhance family-centred practice and parental capacity, though broader structural and policy reforms are needed to address service gaps. Occupational therapists can enhance parent support through specialised programmes such as the WeCare programme, tailored to meet the unique needs of each family. Continued development and dissemination of WeCare is warranted to enhance equitable access and improve family outcomes.

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来源期刊
BMJ Paediatrics Open
BMJ Paediatrics Open Medicine-Pediatrics, Perinatology and Child Health
CiteScore
4.10
自引率
3.80%
发文量
124
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