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CF and me. Interview by Anna Sidey

K Llewellyn

    Paediatric Nursing
    |March 30, 1999
    PubMed

    Home care and aggressive management for cystic fibrosis can help to ensure that this disorder fits in to a family's lifestyle and does not dictate it. This pattern of care requires high levels of autonomy, commitment and confidence in the nursing team, alongside a mutually trusting and supportive relationship between the child, the family and the care team. In this case this relationship was between Kelly and the care team. Kelly was initially reluctant to assume responsibility for her lifestyle and increasingly complex treatment and care but once empowered to do so, became a great enthusiast. This enthusiasm led her, in her early teens, to write the following account, which she asked me to publish for her. I knew Kelly for over 10 years, during which her nature demonstrated a complex mixture of compliance and contrariness in both her everyday life and her approach to her CF. Her death followed a rapid deterioration. This account reflects the quality of life she and her family achieved during one of the more fulfilling episodes in her short life.

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