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. 2024 Nov;50(6):e13327.
doi: 10.1111/cch.13327.

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

J van der Kemp  1 , M Ketelaar  1   2 , I C M Rentinck  3 , M P J Sommers-Spijkerman  1 , M J N L Benders  4 , J W Gorter  1   2   5
Affiliations

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

J van der Kemp et al. Child Care Health Dev. 2024 Nov.

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.

Keywords: cerebral palsy; communication; disclosure of diagnosis; experiences; needs; parents.

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