University of Sussex
Browse
Family_Care_and_Support_FINAL_ACCEPTED_VERSION.pdf (159.75 kB)

What is the perceived nature of parental care and support for young people with cystic fibrosis as they enter adult health services?

Download (159.75 kB)
journal contribution
posted on 2023-06-08, 20:50 authored by Nicola Iles, Karen LowtonKaren Lowton
The majority of those diagnosed with cystic fibrosis (CF) now live to adulthood. In response to increased survival age, transition services have been developed to ensure smooth transfer from paediatric to adult specialist healthcare, although the majority of treatment and care continues to be delivered in the home. However, little is known about how young adults and staff conceptualise the nature of the parental role after young people have left paediatric care. The aim of this study is to explore the nature of parental support that is perceived to be available at this time. As part of a larger study of transitional care, semi-structured interviews were conducted with 50 young people with CF aged 13-24 years (32 with experience of transition and/or adult CF services) and 23 specialist healthcare professionals (14 working in adult care) across two CF centres in Southeast England. Interviews took place in young people's homes or within CF services, using a topic guide and were recorded, transcribed and analysed thematically. Four domains of perceived parental support were identified by the young people interviewed, with varying degrees of continuity into adult care: (1) Providing non-clinical practical and emotional support; (2) Acting as 'troubleshooters' in times of health-related crisis; (3) Working in partnership with offspring in ongoing disease management in the home and clinic; (4) Acting as 'protectors' of their children. Young people and service staff expressed tensions in managing parental involvement in post-paediatric consultations and the degree to which parents should be aware of their offspring's deteriorating health and social concerns. Parental anxiety and over-involvement was perceived by many young people and staff as unsupportive. We suggest that although health and social care providers are mindful of the tensions that arise for those leaving paediatric services, the place of parental support in adult care is currently contentious for these 'new' ageing populations. © 2009 Blackwell Publishing Ltd.

History

Publication status

  • Published

File Version

  • Accepted version

Journal

Health and Social Care in the Community

ISSN

0966-0410

Publisher

Wiley

Issue

1

Volume

18

Page range

21-29

Department affiliated with

  • Sociology and Criminology Publications

Full text available

  • Yes

Peer reviewed?

  • Yes

Legacy Posted Date

2015-05-20

First Open Access (FOA) Date

2015-05-20

First Compliant Deposit (FCD) Date

2015-05-19

Usage metrics

    University of Sussex (Publications)

    Categories

    No categories selected

    Exports

    RefWorks
    BibTeX
    Ref. manager
    Endnote
    DataCite
    NLM
    DC