Health organisations need to give careful consideration to schemes which encourage people with chronic diseases to seek support from peers, to avoid the potential negative effects, new research shows.
The study was led by the University of Exeter Medical School will be published in the July edition of the journal Patient Education and Counseling, and is now available online. The research, supported by the National Institute for Health Research Collaboration for Leadership in Applied Health Research and Care in the South West Peninsula (PenCLAHRC), has highlighted both the positive and negative effects of such peer support schemes. The findings emphasise that such networks are broadly beneficial – but the study’s authors warn that the potential drawbacks must be considered if they are to be avoided.
Increasingly, care providers are encouraging people who have chronic diseases to engage with other patients who have shared experiences as part of their treatment programme. They act as “mentors” and provide social and emotional support, as well as practical information.
The model takes a range of different forms, but is widely seen as an effective and low-cost care tool. Its popularity has grown against a backdrop of an increasing burden on healthcare systems caused by rising levels of chronic disease, due to aging populations, lifestyle factors and improved treatment, which means people live longer with disease.
Professor Nicky Britten, of the University of Exeter Medical School, said: “Peer support schemes can be extremely beneficial, but it is imperative that they are handled with sensitivity and understanding. There’s a lot of talk about how the recipients of this support benefit, but we have to remember that the ‘mentors’ themselves may have a serious illness, and they may encounter negative feelings such as rejection in some instances. We need to ensure support is available to help them through that.”
Prof Britten was part of the international research team, which also incorporated Sunnybrook Health Sciences Centre in Toronto, Canada, Toronto General Hospital and St Michael’s Hospital, Toronto.
The work was funded by the Canadian Institute for Health Research and the Ontario Rehabilitation Research Advisory Network. Professor Britten is partially supported through PenCLAHRC. .
The team’s findings were based on a synthesis of 25 papers about the perceived impact and experience of people across a range chronic diseases who have taken part in peer support schemes in several different countries including the UK, the US, Canada and Australia. The concepts they identified were brought together in a model which highlighted both positive and negative perceptions, and whether they were experienced by the mentor, the recipient or both.
Although peer support was largely found to foster a sense of connection and help participants find a value in life, they could both alleviate and reproduce feelings of isolation arising from the diagnosis. The schemes reduced feelings of being alone, but this could backfire if the two parties involved shared little in common, other than their illness. Mentors were found to be at particular risk of emotional entanglement, with the relationship sometimes placing their wellbeing at risk, particularly when the recipient’s condition deteriorated. They were also found to need support after the relationship was severed, to cope with a sense of loss.
Prof Britten concluded: “These schemes are billed as peer-to-peer, but there is an intrinsic imbalance in the fact that one person is receiving the service, and the other is delivering, and may have varying degrees of training to prepare them for that role. That can reproduce some of the hierarchical relationship between a patient and a healthcare professional, and any tension arising form that needs to be managed carefully. This type of support is extremely valuable, and clearly has an important role to play in healthcare. But in order for it to be a positive experience for all involved, it is crucial that the impact on both the “mentor” and the recipient is considered, and that health care providers avoid a ‘one size fits all’ approach.”
University of Exeter