Mindfulness intervention in paediatric CF
Research type
Research Study
Full title
A feasibility study of an online Paws b mindfulness course for children with Cystic Fibrosis (CF) and their siblings.
IRAS ID
281723
Contact name
Sally Ann Harris
Contact email
Sponsor organisation
Brighton and Sussex University Hospital (BSUH) NHS trust
Duration of Study in the UK
1 years, 0 months, 0 days
Research summary
Research summary:
This feasibility study of mindfulness training in paediatric Cystic fibrosis (CF) follows a successful service development project funded by the Rockinghorse children’s charity, in which nine mothers of children with CF completed the 8-week ‘Rockinghorse Nurturing Parents Mindfulness-based Well-being Group in CF’ (NP group) in 2018-19. Mothers reported a wide range of psychological benefits, including improvements in anxiety, depression, and parenting stress. Mothers who participated in NP group provided feedback about their experience of learning mindfulness skills and highlighted the need for additional mindfulness training for their child with CF and siblings. Based on their own experiences, mothers felt that mindfulness might help their child with CF, as well as siblings, to manage CF-related stress, anxiety, and low mood. As such we would like to offer children with CF and their siblings access to a mindfulness group. The intervention will be offered online because children with CF cannot meet in person due to infection risk.
The study will explore if an online mindfulness intervention is beneficial for children with CF and what factors might affect recruitment to a larger study, adherence with the intervention and possible study withdrawal. The overarching objective of this study is to establish whether a definitive multi-centre RCT of the effectiveness of online Paws b course with children with CF and their siblings is feasible.
Children will be offered the mindfulness course ‘Pause Breathe Be ‘(Paws b) developed by the Mindfulness in Schools Project (MiSP). MiSP is a U.K. charity and leader in the field of mindfulness in education in the U.K. Paws b is usually delivered face to face in a school classroom, by a teacher. For this pilot study MiSP has granted exceptional permission for Paws b to be delivered online to children with CF in their own homes via the online platform Zoom. www.zoom.co.uk
Summary of results:
Mindfulness intervention (Online Paws b group) in paediatric CF
Who carried out the research?
The research was carried out by Dr Sally Harris who is a Clinical Psychologist in the paediatric Cystic Fibrosis (CF) team at University Sussex Hospitals (UHS) NHS Trust. The research was sponsored by UHS NHS Trust and funded by Rockinghorse charity. We wish to thank all the children and parents who took part in the research.Who helped develop the research?
Members of the CF community helped develop the research plan with Sally and the study team. Nine mothers of children with CF suggested an online mindfulness group for their children with CF.What was the main research question?
CF is a genetic health condition that affects over 11,000 people in the UK. Young people with CF are at risk of poorer Health-related Quality of Life (HRQOL) due to the burden of living with the condition. People with CF cannot meet in person due to risk of infection. There is a need to develop interventions to improve HRQOL and help young people with CF meet in an online group setting. The research explored if mindfulness intervention (online Paws b group) could improve HRQOL for children with CF and siblings aged 7-18 years, and what factors might affect recruitment to a larger study and possible study withdrawal.What did the research involve?
Online Paws b group was led by two mindfulness trainers (based at the Mindfulness in Schools Project, MiSP) and the CF Psychologist for UHS NHS Trust (Sally Harris) was present to co-facilitate for 12 consecutive weeks. Children completed questionnaires about their HRQOL before and after the group and did a short interview after the group to give feedback.Who took part?
Children with CF were recruited in June and July 2023 from the UHS paediatric CF service and Kings College London (KCL) paediatric CF service, including a clinic in Eastbourne. Overall, 63 children aged 7-18 years were invited to take part. 35 were aged 7-11 years (at primary school) and 28 were 12-18 years (at secondary school).Children aged 7-11 years showed greater interest which suggest this is the best age to offer a weekly online Paws b group. Of thirty-five children aged 7-11 years, twenty-one (60%) were interested. Of these twenty-one, ten attended a taster session with two siblings before deciding to take part.
Who completed the group and what were the results of the study?
Nine of the twelve children aged 7-11 years completed the group (75%). There were no adverse responses to Paws b group. Children enjoyed the group and attendance (≥83%) and weekly session ratings were good. After the group all children reported using mindfulness practices to manage difficult emotions at school, at home, or at hospital.Clinically significant improvements were found across all areas of HRQOL. The most common improvements (≥50%) were child reports of their emotional (78%), school (56%), and physical functioning (56%) and parent reports of child physical functioning (56%). One child with eating difficulties showed clinically significant improvement on questionnaires that assessed difficult behaviour at mealtimes.
How has this study helped patients and researchers?
Online Paws b is a feasible option for improving HRQOL amongst younger children with CF. CF teams can train staff to deliver this group and children are likely to benefit. Researchers now have a better understanding of researching online groups for younger children with CF including how to run them and potential benefits.Details of any further research planned
We might apply for funding to run a pilot randomised controlled trial (RCT) across multiple CF centres to test the effectiveness of online Paws for improving HRQOL.Where can I learn more about this study?
You can contact Dr Sally Harris at sally.harris13@nhs.net for more information about this research study.REC name
West Midlands - Edgbaston Research Ethics Committee
REC reference
20/WM/0322
Date of REC Opinion
11 Jan 2021
REC opinion
Further Information Favourable Opinion