Exploring experiences and issues of Young Adults with CF

  • Research type

    Research Study

  • Full title

    Young Adults in the Newcastle CF Service: An Exploratory Study of Transition to Adult Services and Current Issues

  • IRAS ID

    149769

  • Contact name

    Kristina Askew

  • Contact email

    kristina.askew@nuth.nhs.uk

  • Sponsor organisation

    The Newcastle upon Tyne Hospitals NHS Foundation Trust

  • Research summary

    Within the Newcastle Cystic Fibrosis Service, young adults with cystic fibrosis (CF), around the age of 16-22 years, transfer to the adult CF service via specialist transition clinics which facilitate the change from child-centred to adult orientated care. The experience of transition from the service user perspective is of particular importance in developing a service that is tailored to meet the needs of these young people. Research indicates that patients’ management of their CF can deteriorate after transition to adult services. To facilitate optimal management is important to identify what further information and support may be needed at this stage, as well as being aware of current issues for young adults with CF.

    Aims
    This research project aims to explore young peoples’ experiences and their needs during their attendance of the CF transition clinics in order to develop a more individually tailored and comprehensive service. The research also aims to explore current issues relating to young people with CF to identify the information and support that they may need to manage their condition.

    Design
    The study employs a cross-sectional design using questionnaires and telephone interviews. The endpoint of the research will be reached once 40 participants have completed the telephone interview and questionnaires and the data has been analysed.

  • REC name

    North West - Greater Manchester West Research Ethics Committee

  • REC reference

    14/NW/1109

  • Date of REC Opinion

    4 Jul 2014

  • REC opinion

    Favourable Opinion