Cystic fibrosis patients' entering motherhood after Kaftrio
Research type
Research Study
Full title
Exploring cystic fibrosis patients’ experience of entering motherhood following the introduction of life-changing treatment, Kaftrio: An interpretative phenomenological analysis of psychosocial factors
IRAS ID
328932
Contact name
Katie Robb
Contact email
Sponsor organisation
NHS Greater Glasgow and Clyde
Duration of Study in the UK
0 years, 4 months, 29 days
Research summary
Summary of Research
Cystic Fibrosis (CF) is an inherited, chronic health condition affecting the lungs and digestive system which sadly impacts physical functioning and reduces life expectancy. However, recent medical developments including the new drug, Kaftrio, have resulted in improved health outcomes for CF patients. As a result, there has also been an increase in CF patients choosing to become parents. As these changes are so recent, however, the psychosocial factors involved in this decision have not yet been researched.
This study will explore the experience of women with CF who have made the decision to become a mother since commencing Kaftrio.
We aim to investigate the emotional, social and psychological impact of making this decision, and whether attitudes towards motherhood have changed following the introduction of Kaftrio.
3-6 mothers who are patients of the West of Scotland Cystic Fibrosis Service (WoSACF) will be interviewed about their decision to become a mother.
Participants will be biological or adoptive, mothers with a diagnosis of CF who are taking Kaftrio and are over 18 years.
Clinicians from the WoSACF will identify suitable participants. Potential participants will have the opportunity to discuss with the researcher before giving informed consent to participate.
Participants will complete a short demographic questionnaire and interview for approximately one hour about their experiences at home or via virtual appointment. The interviews will be audio recorded, transcribed and analysed.
Findings of this study will inform those involved in supporting women with CF to become mothers to do so in the most helpful and effective way. It will also provide reassurance for women in this position that they are not alone. All participants will be offered a summary of the research findings.
This research will be submitted as a thesis to meet researcher’s requirements for the Doctoral degree of Clinical Psychology at the University of Glasgow.Summary of Results
This study explored the experience of women with Cystic Fibrosis (WwCF) who have made the decision to become a mother since starting Kaftrio. In particular:
1. The emotional, social and psychological impact of making this decision.
2. How attitudes towards motherhood have changed following the introduction of Kaftrio.
3. The support needs of this population (e.g., from their healthcare team)Methods
Participants were English-speaking, biological mothers with a diagnosis of CF who were taking Kaftrio and were patients from the West of Scotland Adult CF Service (WoSACFS). Clinicians from WoSACFS identified nine participants who were eligible for the study. These participants provided consent to be contacted by the researcher by telephone to discuss the study and receive additional study materials. Four of those who were contacted declined due to time constraints and two did not respond. Three mothers agreed to participate by signing a consent form and semi-structured interviews were carried out: two online and one in person. All interviews were recorded, typed, and analysed using a method commonly used in psychological research called Interpretative Phenomenological Analysis (IPA). The focus of IPA is on how individuals (the participants) make sense or take meaning from their experiences.Results
Three themes emerged from the participants’ accounts: “Kaftrio impacted the decision to become a mother”, “Preparation for pregnancy and motherhood with CF in this new era”, and “Adjustment to an unexpected pregnancy and motherhood experience”. Emotional challenges associated with uncertainty about the future, difficulties accepting support and self-judgment were also identified.Conclusions
Kaftrio influences WwCF’s reproductive decisions and experience of motherhood. While this was associated with improved health during and following their pregnancies and positive experiences of support, there are a number of emotional challenges which remain. CF teams should consider ways in which they can better support WwCF who wish to become mothers since starting Kaftrio.REC name
East of Scotland Research Ethics Service REC 1
REC reference
23/ES/0038
Date of REC Opinion
4 Oct 2023
REC opinion
Further Information Favourable Opinion