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Theme: CLAHRC - Person-Centred Care
Around 1 in 20 children in the UK live with chronic health conditions, most commonly neurodisabilities such as cerebral palsy or autism. Most disabled children live at home, supported by their families. These families can face considerable challenges. Parents of disabled children are at increased risk of relationship problems, stress, depression and lack of sleep. Family relationships may suffer through exhaustion and stress and parents report feeling isolated, lonely and unsupported.
Peer support between parents of disabled children has the potential to alleviate some of the stress and problems faced by families and have a positive impact on their lives. Peer support can be broadly defined as emotional and practical support given by people who have had similar experiences themselves and can be delivered formally, for example through condition-specific charities, or less formally such as in internet forums. This project will evaluate the peer support service offered by Face2Face in Devon and Cornwall. Face2Face is a national, charitable network which offers peer support to parents of disabled children from trained befrienders.
The study is being run by the Peninsula Cerebra Research Unit (PenCRU). PenCRU are collaborating with Face2Face in Devon and Cornwall and a broad group of other stakeholders, including a number of parents of disabled children, to evaluate how peer support works and the impact it can have on parents of disabled children.
1. Conduct a systematic review of existing literature on peer support for parents of disabled children
2. Conduct a pilot evaluation of Devon and Cornwall Face2Face, to investigate how peer support works and its impact in terms of outcomes
3. To develop a means of evaluating both the effectiveness and cost-effectiveness of providing peer support on a larger scale
Our evaluation of Devon and Cornwall Face2Face will consider a number of factors including what resources are required to deliver the programme and the costs of providing support. We will also take into account non-monetary costs, such as voluntary time. Our evaluation will provide an assessment of the impact of peer support: what outcomes the support leads to through qualitative work with those who provide and receive this support. We will also investigate the appropriateness of using outcome measures such as the Parent Stress index to complement the qualitative work. Information gained from the pilot evaluation would be used to develop a protocol for a larger scale more definitive evaluation of the effectiveness and cost-effectiveness of providing peer support to parents of children with disability.
The findings from this study will be disseminated in the autumn of 2013 via academic publications and more broadly through websites such as the Mentoring and Befriending Foundation and Cerebra.
1. Systematic review of the existing literature on peer support for this group:
In 2012 we completed the systematic review which is published in Developmental Medicine and Child Neurology. With the help of parents from the project stakeholder group and the family faculty, we have written a plain language summary of the review, which has been published alongside the journal article and on our website.
2. Costing study of the F2F service provided in Devon and Cornwall:
In 2012 we completed data collection for the costing study. 29 parents who offer support (befrienders) across Devon and Cornwall recorded the time they spent on different aspects of their volunteering for Face2Face, including things like time spent travelling and administration, over a period of three months. This information, along with annual expenditures and number of families entering and leaving the service in a 12 month period (complete cases) will enable us to present a much clearer picture of the costs of providing the service in terms of time, resources and money.
3. Qualitative research comprising interviews with parents who have given or received support through Face2Face and relevant health and social care professionals:
In 2012 we completed data collection for the qualitative research. In total, we interviewed 12 parents who had received befriending through Face2Face, 10 health and social care professionals from a range of services. 22 befrienders participated in the qualitative research; 13 had individual interviews and 9 participated in focus groups. Comparing and contrasting the perspectives of parents, befrienders and professionals will enable us to identify similarities and differences which may enable providers to reflect on the service in line with parents’ experiences and desires.
Dr Val Shilling, Morwenna Rogers, Dr Jo Thompson-Coon