Exploring Parents' Experiences and Needs During Disclosure of a Cerebral Palsy Diagnosis of Their Young Child: A Scoping Review

IF 1.8 4区医学 Q2 PEDIATRICS Child Care Health and Development Pub Date : 2024-09-29 DOI:10.1111/cch.13327

J. van der Kemp, M. Ketelaar, I. C. M. Rentinck, M. P. J. Sommers-Spijkerman, M. J. N. L. Benders, J. W. Gorter

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Abstract

Background

Parents often perceive the news that their child has cerebral palsy (CP) as overwhelming and shocking. They are at increased risk of parental stress and mental health problems, which in turn can affect the interaction between the parent and the child. Parental mental health outcomes are known to be affected by the process of disclosure of a diagnosis. In this study, we aimed to synthesize the current knowledge about parents' experiences and needs regarding communication during the disclosure of the diagnosis of their child with (or at risk of) CP.

Methods

A scoping review following the methodological steps outlined by the Joanna Briggs Institute was performed using PubMed, Embase, CINAHL and PsycINFO. We qualitatively explored parent-reported experiences and needs across included studies, using thematic analysis.

Results

A total of 19 studies were included. Six themes were identified, three in relation to experiences (i.e., preceding experiences and feelings, perceptions of the disclosure and emotional impact) and three in relation to needs (i.e., transparency in information, supportive attitude and having a say). Despite high variability across studies regarding parental needs, most studies reported the need for (i) honest and clear information, (ii) good communication skills amongst professionals and (iii) emotional and practical support after diagnosis.

Conclusions

Our findings suggest that parents' experiences and needs in the period when their child's diagnosis of (high risk of) CP is communicated are highly variable, due to an interplay of personal and contextual factors. To facilitate good communication during disclosure, it is crucial that health care professionals assess and understand this complex process and consider parents' needs for open communication and autonomy in the process. Therefore, professionals need to attune to parents' needs and their individual preferences regarding conversations about their child with (or at risk of) CP.

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探索父母在披露幼儿脑瘫诊断期间的经历和需求：范围审查。

背景：父母在得知自己的孩子患有脑性瘫痪（CP）时，往往会感到不知所措和震惊。他们面临父母压力和心理健康问题的风险增加，这反过来又会影响父母与孩子之间的互动。众所周知，父母的心理健康结果会受到诊断披露过程的影响。在本研究中，我们旨在综合目前关于父母在公开其患有（或可能患有）CP 的孩子的诊断过程中的沟通经验和需求的知识：按照乔安娜-布里格斯研究所（Joanna Briggs Institute）概述的方法步骤，我们使用 PubMed、Embase、CINAHL 和 PsycINFO 进行了范围综述。我们采用主题分析法对纳入研究的家长报告的经历和需求进行了定性分析：结果：共纳入 19 项研究。共确定了 6 个主题，其中 3 个与经历有关（即之前的经历和感受、对披露的看法和情绪影响），3 个与需求有关（即信息透明度、支持态度和发言权）。尽管关于家长需求的研究之间存在很大差异，但大多数研究都报告了以下需求：(i) 诚实和清晰的信息；(ii) 专业人员之间良好的沟通技巧；(iii) 诊断后的情感和实际支持：我们的研究结果表明，由于个人因素和环境因素的相互作用，父母在其子女被诊断出患有（高风险）CP 时的经历和需求存在很大差异。为促进信息披露期间的良好沟通，医护人员必须评估和理解这一复杂过程，并考虑家长在这一过程中对开放式沟通和自主权的需求。因此，专业人员在与患有（或有可能患有）CP 的儿童进行交谈时，需要关注家长的需求及其个人偏好。

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来源期刊

Child Care Health and Development 医学-小儿科

CiteScore

3.40

自引率

5.30%

发文量

136

审稿时长

4-8 weeks

期刊介绍： Child: care, health and development is an international, peer-reviewed journal which publishes papers dealing with all aspects of the health and development of children and young people. We aim to attract quantitative and qualitative research papers relevant to people from all disciplines working in child health. We welcome studies which examine the effects of social and environmental factors on health and development as well as those dealing with clinical issues, the organization of services and health policy. We particularly encourage the submission of studies related to those who are disadvantaged by physical, developmental, emotional and social problems. The journal also aims to collate important research findings and to provide a forum for discussion of global child health issues.