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

Parents of disabled children are encouraged by health services to seek peer support. Delivering one-to-one support services is resource intensive and so it is important their effectiveness is evaluated. This qualitative study considers the impact on both recipients and befrienders.

  • V Shilling, S Bailey, S Logan and C Morris,
  • Child: Care Health and Development Vol 41, (2015)

Participants were 12 parents and 23 befrienders who had contact with the Face2Face befriending service in Devon and Cornwall during a 12-month period, and 10 professionals from health, social care and education services. A key strength of the evaluation was the involvement of a stakeholder group including parents of disabled people who were able to advise on all aspects of its design.

The catalyst: shared experience

Shared experience was perceived by all participant groups to be central to successful peer support and was a catalyst for other elements of support, enabling parents to:

  • Learn from the experience of others
  • Speak freely in a safe and non-judgmental environment
  • Receive support and encouragement from their befriender.

These elements underpinned perceived outcomes for both parents providing and receiving support.

Outcomes for parents receiving support

Short-term outcomes included a sense of relief, "emotional download", practical advice and social interaction. These are also indicators that the relationship is functioning and that the parent may go on to benefit from support. Long term outcomes centred on:

  • Reduced isolation
    All participant groups discussed the sense of isolation experienced by parents of disabled children (who felt different to other parents) and the potential for peer support to reduce this. Continuity, trust and a safe and supportive environment in which parents feel able to discuss their mixed feelings about their family, facilitated a sense of reduced isolation.

  • Emotional stability and personal growth
    The service provided parents with emotional support and helped them to develop the ability to cope with emotional ups and downs for themselves.

Outcomes for parents providing support

Befrienders experienced a number of positive outcomes outlined below. Nevertheless, providing support was reported to create emotional burden and concerns for befrienders around their performance, and also required a substantial time commitment.

  • Training
    Training is an important element of the Face2Face service. This equipped befrienders with the skills to befriend but also contributed to their emotional development and creating a supportive social network. Parents could continue to belong to this network even if they did not go on to befriend.

  • Mutual support
    The befriender network was discussed by professionals as essential for the safety and wellbeing of parents and befrienders. However, professionals seemed unaware of the important personal and emotional support that befrienders described giving each other, which was similar to that experienced by the parents they in turn supported.

  • Satisfaction and personal growth
    Particularly rewarding for befrienders was using their own, sometimes negative, experiences to help others. They described ways in which changes in their confidence and self-worth, through involvement with the peer support service, enabled them to operate more effectively in their own relationships and engage in activities, such as joining committees or becoming involved in training professionals.

Implications for practice

Both befrienders and parents perceived positive outcomes from their involvement in peer support although there is also potential for less positive impact on befrienders. In particular, the two groups showed parallels in the benefit obtained from mutual support and personal growth centred on shared experience. This has two important implications:

  • Future programme development should emphasise training and mutual support for befrienders
  • Capturing all potential beneficiaries of a peer support service is important in evaluations.

Failure to acknowledge the impact of peer support services for befrienders has potential implications for whether the service is considered value for money, for example if the service is viewed purely for the benefit of parents receiving support, allowing trainees to remain part of the network who do not go on to befriend would seem to be a waste of money. It is only when the combined benefits of training and ongoing mutual support to befrienders are viewed as outcomes of a community-based service that the complex nature, and multiple levels, of this model of peer support become clearer.

The research section for this special report is based on a selection of academic studies which have been explored and summarised by Research in Practice, part of the Dartington Hall Trust.

This article is part of CYP Now's special report on special educational needs and disabilities.
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