Peer support for parents of disabled children part 1: perceived outcomes of a one‐to‐one service, a qualitative study

Shilling, Valerie; Bailey, Sarah; Logan, Stuart; Morris, Christopher

doi:10.1111/cch.12223

Cited by 31 publications

(53 citation statements)

References 33 publications

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“…The theme of support was evident although it ranged from support within the couple to the wider family, to seeking out and accessing support from other parents who were going through similar experiences. This provides parents with a shared social identity and enables them to learn from the experiences of others (Shilling et al 2013), and use of peer support groups has been found to benefit parents across a range of chronic health conditions (Kerr and McIntosh 2000;Shilling et al 2015;Tong et al 2008), both online and in person (Bray et al 2017). An emergent theme was the use of faith and spirituality to cope with unknown or difficult experiences, which has been shown to support parent coping (Raingruber and Milstein 2007).…”

Section: Discussionmentioning

confidence: 99%

Coping in Parents of Children with Congenital Heart Disease: A Systematic Review and Meta-synthesis

2019

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Objectives Congenital heart defects (CHD) can be detected at ultrasound but are sometimes not diagnosed until birth, which can cause stress and heightened emotion within the family. Parents face challenges including dealing with surgical procedures for their child and integrating healthcare management into family life. The aim of this review was to understand parental coping with their child's CHD. Methods Six databases were systematically searched to identify qualitative studies relating to parental coping in the context of having a child with CHD and which met inclusion criteria. Studies were subject to quality appraisal using Walsh and Downe's checklist, and synthesised using Noblit and Hare's meta-ethnographic approach. Results The synthesis of 22 studies reporting on 704 parents' accounts showed that parent coping fell within four overarching themes: Emotional Responses, Support Systems, Parental Management and Avoidance. These four themes contained 13 subordinate themes. Conclusions Parental psychosocial coping varies over time from diagnosis, through surgery to childhood. Common themes were evident, but individuals employed their own styles and strategies based on prior experience, availability of social support, personal characteristics and beliefs. Parents tried to maintain a sense of normality, integrating CHD into their lives without it having a major impact except at times of transition and hospitalisation when they had to call on additional strategies or support to manage this stress. This review offers clear guidance to clinical services on how best to support parents and families. Keywords Family • Adjustment • Cope • Child • CHD Congenital Heart Disease (CHD) is one of the most common types of birth defects, affecting 8 per 1000 babies born globally (Bernier et al. 2010), and prevalence has increased over time (van der Linde et al. 2011). As there are many variations of CHD which sometimes occur in combination and with differing severities, prognosis and treatment may vary between individuals. NICE guidance (National Institute for Health and Care Excellence 2016) advises that "children, young people and their parents or carers may need support,

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Section: Discussionmentioning

confidence: 99%

Coping in Parents of Children with Congenital Heart Disease: A Systematic Review and Meta-synthesis

2019

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“…It also highlights the potential importance of local parent advocacy groups, both as mechanisms for support and sources of information, as well as their core role in facilitating service user participation. Previous authors (Goodley & Tregaskis, 2006;Jackson, 2008;Shilling, Bailey, Logan, & Morris, 2014) also report the importance parents place on talking to other parents in the same situation as themselves in order to share experiences and knowledge.…”

Section: Discussionmentioning

confidence: 99%

The participation of parents of disabled children and young people in health and social care decisions

McNeilly

Macdonald

Kelly

2017

Child

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Parents in this research recounted positive as well as negative experiences. Parents took on a protective role when decisions were made about their son or daughter and at times, reported the need to "fight" for their child. The provision of information remains problematic for these families, and at times, this created a barrier to parents' participation in decision making. Partnership approaches to care that recognize parents' expertise are particularly important to parents when decisions are made with professionals.

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“…The patient and public involvement in the design and conduct of this research is described in more detail in the related paper (Shilling et al . ).…”

Section: Methodsmentioning

confidence: 97%

“…In the first of this pair of papers we described the perceived outcomes of a one‐to‐one peer support service for parents of disabled children (Shilling et al . ). We reported, as have others (Ainbinder et al .…”

Section: Introductionmentioning

confidence: 97%

Peer support for parents of disabled children part 2: how organizational and process factors influenced shared experience in a one‐to‐one service, a qualitative study

Shilling

Bailey

Logan

et al. 2015

Child

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Peer support for parents of disabled children part 2: how organizational and process factors influenced shared experience in a one-to-one service, a qualitative study Article (Submitted Version) http://sro.sussex.ac.uk Shilling, V, Bailey, S, Logan, S and Morris, C (2015) Peer support for parents of disabled children part 2: how organizational and process factors influenced shared experience in a one-to-one service, a qualitative study. Child: Care, Health and Development, 41 (4). pp. 537-546. ISSN 0305-1862 This version is available from Sussex Research Online: http://sro.sussex.ac.uk/62345/ This document is made available in accordance with publisher policies and may differ from the published version or from the version of record. If you wish to cite this item you are advised to consult the publisher's version. Please see the URL above for details on accessing the published version. Copyright and reuse:Sussex Research Online is a digital repository of the research output of the University.Copyright and all moral rights to the version of the paper presented here belong to the individual author(s) and/or other copyright owners. To the extent reasonable and practicable, the material made available in SRO has been checked for eligibility before being made available.Copies of full text items generally can be reproduced, displayed or performed and given to third parties in any format or medium for personal research or study, educational, or not-for-profit purposes without prior permission or charge, provided that the authors, title and full bibliographic details are credited, a hyperlink and/or URL is given for the original metadata page and the content is not changed in any way.1 This is the pre-peer reviewed version of the following article: V. Shilling, S. Bailey, S. Logan, C. Morris Peer support for parents of disabled children part 2: how organizational and process factors influenced shared experience in a one-to-one service, a qualitative study, which has been published in final form at http://onlinelibrary.wiley.com/doi/10.1111/cch.12222/full. First published online 2nd January 2015. Manuscript Accepted: 9th November 2014. This article may be used for noncommercial purposes in accordance with Wiley Terms and Conditions for Self-Archiving. ABSTRACT:Background: Parents of disabled children often seek support from their peers. The shared experience between parents appears to be a crucial mediating factor. Understanding how a sense of shared experience is fostered can help to design and evaluate services that seek to provide peer support.Methods: A qualitative study involving semi-structured interviews and focus groups.Participants were 12 parents and 23 befrienders who had contact with the Face2Face one-toone befriending service in Devon and Cornwall during a 12 month period, and 10 professionals from health, social care and education.Findings: Formal structures and processes in place such as training and ongoing supervision and support were highly valued, as was the highly personalised, confidential, fl...

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Peer support for parents of disabled children part 1: perceived outcomes of a one‐to‐one service, a qualitative study

Abstract: Background: Parents of disabled children are encouraged to seek peer support. Delivering

Cited by 31 publications

References 33 publications

Coping in Parents of Children with Congenital Heart Disease: A Systematic Review and Meta-synthesis

Coping in Parents of Children with Congenital Heart Disease: A Systematic Review and Meta-synthesis

The participation of parents of disabled children and young people in health and social care decisions

Peer support for parents of disabled children part 2: how organizational and process factors influenced shared experience in a one‐to‐one service, a qualitative study

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