Parental experience of uncertainty in CPAM diagnosis and management
Research type
Research Study
Full title
Parental Experience of Uncertainty in the Context of the Diagnosis and Management of Congenital Pulmonary Airway Malformation (CPAM).
IRAS ID
309326
Contact name
Katie Robb
Contact email
Sponsor organisation
University of Glasgow
Duration of Study in the UK
1 years, 6 months, 1 days
Research summary
Research Summary
In the UK, pregnant women are offered ultrasound scans at around 20 weeks of pregnancy. This scan can sometimes identify problems or “anomalies” with the baby. This allows doctors to begin to plan how to look after the baby but can be a shock for parents.One anomaly that can be seen on this scan is a CPAM. This stands for Congenital Pulmonary Airway Malformation and is an area of abnormal lung tissue. When the baby is born, the CPAM might not cause any problems, and doctors cannot always tell if the baby will have problems later. Doctors and parents can feel uncertain as to whether surgery is the best treatment plan if the CPAM is not causing the baby any problems, or if they should “watch and wait” to see if the baby goes on to develop symptoms before deciding to operate.
This research project examines the experience of parents whose infant was diagnosed with CPAM which was not causing any obvious problems when the baby was born. This will focus on parents’ decisions about whether they wanted their baby to have surgery to answer the following questions:
1. What was it like to find out that your baby had a CPAM during pregnancy?
2. What is it like for parents to make decisions about whether the baby should have surgery?Participants will be parents of children who were born with a CPAM and who attend ongoing review appointments at the CPAM clinic. This study will find out about parents’ experiences of decision-making asking them to “look back” on the experience in an interview.
Results will help inform the service for families of babies with CPAM and better understand their decision making. Findings will be made available to those attending and working in the CPAM clinic and shared in wider academic journals.
Summary of Results
Background In the UK, pregnant women are offered ultrasound scans at around 20 weeks of pregnancy to check that their baby is healthy. Usually this is a happy time. However, this scan can sometimes identify problems. This allows doctors to begin to plan how to look after the baby but can be a shock for parents. One problem that can be seen at the 20-week scan is CPAM. This stands for congenital pulmonary airway malformation, an area of abnormal lung tissue. When the baby is born, the CPAM might not cause any problems, and doctors cannot always tell if the baby will have problems later. Doctors can feel unsure about whether surgery is the best treatment plan or if they should “watch and wait”. Sometimes parents are asked what they think should happen to help make the decision, especially if the baby is born without any problems.Aims
This research project examined the experience of parents whose infant was diagnosed with CPAM which was not causing any obvious problems when the baby was born. This focused on parents’ decisions about whether they wanted their baby to have surgery, to find out what it was like for parents to find out about CPAM during pregnancy, and what it was like to make decisions about whether the baby should have surgery.Methods
This research interviewed four parents (three mothers and one father) of children who were born with a CPAM and who had attended appointments at the CPAM clinic. The study asked parents to “look back” on their experiences during pregnancy and once their baby was born. Participants were recruited through staff at the CPAM clinic, who sent them information about the study and a letter inviting them to take part. The parents were interviewed by a researcher and their interview was recorded and later transcribed. Interpretative Phenomenological Analysis (IPA) was used to analyse the interviews. This is a way of asking people to make sense of what has happened to them. The researcher then looks for themes across all the interviews to find themes across the experience of all participants.Main Findings and Conclusions
Parents told the researcher about their experience of diagnosis of CPAM for their baby, and the researcher examined their accounts to generate four themes. These were “diagnosis changed the expected course of pregnancy”, “searching for information about the condition”, “making decisions about surgery” and “life after decision making”. This study adds to understanding about what it is like for parents to be told about a CPAM at their 20-week scan, how this impacts the rest of their pregnancy, how they find out more about the condition, and how it impacts them today. The results lead to suggestions for ways healthcare staff can support families receiving diagnosis of CPAM in the future.
Has the registry been updated to include summary results?: No
If yes - please enter the URL to summary results:
If no – why not?: Protocol not on a registry
Did you follow your dissemination plan submitted in the IRAS application form (Q A51)?: Yes
If yes, describe or provide URLs to disseminated materials: Study carried out as part of doctoral thesis (DClinPsy). Thesis publicly available on university website https://eur03.safelinks.protection.outlook.com/?url=https%3A%2F%2Fclick.pstmrk.it%2F3ts%2Ftheses.gla.ac.uk%252F83721%252F.%2FNBTI%2FVj_3AQ%2FAQ%2F3d2b5eca-452b-4d42-8c04-5318675a58ff%2F2%2F1DhFof7Ald&data=05%7C02%7Capprovals%40hra.nhs.uk%7Ce39b3ecc3fc843604a9d08dcb94f8226%7C8e1f0acad87d4f20939e36243d574267%7C0%7C0%7C638588998338321971%7CUnknown%7CTWFpbGZsb3d8eyJWIjoiMC4wLjAwMDAiLCJQIjoiV2luMzIiLCJBTiI6Ik1haWwiLCJXVCI6Mn0%3D%7C0%7C%7C%7C&sdata=%2Bp33tXDNG7Zc9BVuiQEveotGw25Svso5htscV0cIBuE%3D&reserved=0Findings shared with CPAM clinic staff as thesis and also in small group discussion.
Plain language summary of results provided to participants as above, with further detail regarding themes identified.
Dissemination plan included publishing in academic journal/conference - this is still to be actioned.
REC name
West of Scotland REC 3
REC reference
22/WS/0107
Date of REC Opinion
4 Aug 2022
REC opinion
Favourable Opinion