Cystic fibrosis screen positive, inconclusive diagnosis (CFSPID) Neonatal Diseases Cystic fibrosis screen positive, inconclusive diagnosis (CFSPID), genetic screening in newborn
Conditions
Interventions
This qualitative study will use grounded theory methodology. Parents will be asked to take part in interviews to capture their experiences. The researcher will have a set of topics, questions, or task
Sponsors
University of Manchester
Eligibility
Sex/Gender
All
Inclusion criteria
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
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
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| 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
| Measure | Time frame |
|---|---|
| There are no secondary outcome measures | — |
Countries
England, United Kingdom
Outcome results
None listed