An evaluation of a community youth befriending programme for young people with cystic fibrosis and their carers in Lothian

Abstract

Introduction and background Cystic Fibrosis (CF) is the UK's most common genetically inherited life limiting condition, which currently affects around 700 people in Scotland (CF Trust 2002). The condition is caused by a gene defect and affects primarily the lungs and digestive system. Children with CF become aware that they are different from their peers, they can be small and thin as puberty usually comes late, there is often a chronic cough and lung function is substantially reduced causing restricted energy levels. Issues relating to cross infection make peer support problematic for this group. In addition, treatments and self care behaviours are substantial, time consuming and add to social isolation due to regular hospitalisation, and absences from school. Consequently this group often need practical and emotional support that would not normally be required in this age group, (Hodson et al 1993).

Rationale for the study The Butterfly Trust was set up in 2002 to support sufferers and families with CF. In November 2004 the Trust was awarded funding to establish a befriending programme for children with CF in Lothian (aged 8-18) with the intention of mentoring and supporting, relieving stress and boredom, improving self confidence, and enhancing general well being. The existing programme was developed in partnership with the CF community nurses at the Royal Hospital for Sick Children (RHSC).

Aims and Methods The purpose of our study was to evaluate the impact of The Butterfly Trust's befriending programme (Cool Friends) on: Young people's self esteem, empowerment and independence Issues such as boredom and social isolation when young people are at home and in hospital. Its function for raising issues of personal importance for young people and their carers. Support for carers; e.g. time out, networking Its potential for influencing concordance with treatment regimens.