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

By Kath MacDonald and Alison Goulbourne

Abstract

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

Topics: RT
Publisher: QMU
OAI identifier: oai:eresearch.qmu.ac.uk:110

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  1. 1 Parents comparison of their CF child to others with CF
  2. 1.3 Getting snippets of info
  3. 1/3.1.1 Hopes for the future 3.2 doi
  4. 3 Being kept waiting
  5. 6 Knowing child is happy
  6. 7 Knowing something not right APPENDIX 3: Thematic chart-parents Theme Fears for the future
  7. a)Sharing the burden of care doi
  8. Accepting info as absolute
  9. Activities /
  10. Anger at others incompetence
  11. Answering difficult Q’s
  12. Befrienders commitment to agreements and plans
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  14. (2002). Effectiveness of mentoring programs for youth: A meta-analytical review. doi
  15. Fears for future (immediate) doi
  16. Fears for future (long term) doi
  17. Following / making a plan
  18. Getting out and about doi
  19. Hopes for the future doi
  20. Locus of control / doi
  21. On parents (X ref to doi
  22. Parents as care givers doi
  23. Parents perceptions of child’s reactions to having CF
  24. Positive outlook (now 13.5)
  25. Primary care giver - physical doi
  26. Processes and procedures – clarity of and monitoring
  27. Protecting them from others with CF
  28. Provide emotional support and reassurance
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  31. Some else for the child to talk to
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  33. Taking the initiative doi
  34. The physical burden of care doi
  35. The role of the volunteer is to work with the client soley on agreed objectives which are clearly stated at the start. Each meeting focuses primarily on achieving the objectives, and the social relationship if achieved is incidental.
  36. Uncertainty about required skills
  37. Using CF to own advantage
  38. Wanting to be the same / doi
  39. Ways of keeping doi
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