Parental experiences of newborn diagnosis of cystic fibrosis

• Research type

  Research Study

• Full title

  Parental experiences of receiving a newborn diagnosis of cystic fibrosis.

• IRAS ID

  249098

• Contact name

  Blathnaid Greene

• Contact email

  blathnaidgreene@nhs.net

• Sponsor organisation

  University of Edinburgh

• Duration of Study in the UK

  0 years, 5 months, 11 days

• Research summary

  The proposed study aims to explore parents’ experiences of their child receiving a diagnosis of cystic fibrosis (CF) following newborn screening. CF is a life-limiting condition and receiving this diagnosis can have a large impact on families. For this reason, it is important to understand what this process is like for families, how this experience has affected them and what they feel is important.
  This study aims to explore these areas with parent participants to deepen understanding and help inform service provision and delivery for future families. It is hoped that will be an opportunity to formally hear and acknowledge the experiences of these families and incorporate what is shared in future diagnostic processes.

  Both mothers and fathers will be invited to participate and they will be recruited from NHS Scotland CF centres from which their family already receive input. This study aims to recruit up to twelve participants whose child has received a newborn diagnosis of CF at least 6 months previously. Written consent will be obtained from each participant. Parents will be asked to provide demographic information in the form of a questionnaire and will be interviewed face-to-face using a semi-structured interview schedule. The interview will last for approximately one hour and will take place in a location agreed upon by the researcher and the participant (e.g. NHS premise or participants home if they prefer). Interviews will be recorded to be analysed by the researcher, this and all other electronic data will be securely stored on NHS Fife and University of Edinburgh networks. Any other data will be stored securely, following NHS Fife policies, in the researcher’s locked cabinet on NHS Fife premises. Following completion of the study, data will be stored by the academic supervisor at the University of Edinburgh.

• REC name

  South East Scotland REC 02

• REC reference

  19/SS/0079

• Date of REC Opinion

  31 Jul 2019

• REC opinion

  Further Information Favourable Opinion