Exploring parents’ experiences of their infant's 'cystic fibrosis screen positive, inconclusive diagnosis' (CFSPID) designation through interviews

Not Applicable

Completed

• Conditions: Cystic fibrosis screen positive, inconclusive diagnosis (CFSPID); Neonatal Diseases; Cystic fibrosis screen positive, inconclusive diagnosis (CFSPID), genetic screening in newborn

• Registration Number: ISRCTN29644140
• Lead Sponsor: niversity of Manchester

Brief Summary

Not available

Detailed Description

Not available

Study Timeline

• Results First Posted: 1900-01-01
• Study Start: 2021-04-19
• Study Completion: 2023-05-31
• Last Update Posted: 20 June 2023

Recruitment & Eligibility

• Status: Completed
• Sex: All
• Target Recruitment: 15

Inclusion Criteria

1. The parent or parents of an infant diagnosed with CFSPID following newborn bloodspot screening
2. Aged =18 years
3. Able to understand the purpose and implications of the research study
4. Willing and able to talk about their experiences with a researcher. Where participants are speakers of languages other than English, the research team will arrange a translator.

Exclusion Criteria

1. Parent of a child who has died or has significant diagnosis of another disease or health issue
2. Barriers to fully understanding the research and communicating with the researcher

Study & Design

• Study Type: Observational
• Study Design: Not specified

Primary Outcome Measures

Name	Time	Method
Parent experiences of their infant's 'cystic fibrosis screen positive, inconclusive diagnosis' (CFSPID) designation using audio-recorded and transcribed participant interview responses which will then be analysed for themes pertaining to the research question collected at a single timepoint

Secondary Outcome Measures

Name	Time	Method
There are no secondary outcome measures