New mindfulness support for families living with cystic fibrosis

Cystic fibrosis can be a challenge for the whole family so the course is for parents, children and sibling affected by the condition.

Around one in every 2,500 babies in the UK are born with cystic fibrosis (CF), a genetic, chronic and life-limiting condition that causes persistent lung infections and over time limits the ability to breathe.

Cystic fibrosis is one of the most challenging conditions to manage, with children having to undertake an arduous routine of intensive physiotherapy, large amounts of medication, specific diets and regular admissions to hospital. This is an enormous burden on a child, not to mention the impact on their parents and siblings.

So, it will come as no surprise that parents and children with CF have increased rates of anxiety and depressions and it’s not uncommon that, on average, families struggle to do more than half of the health related tasks that they are given.

All of this explains why practical help to provide early positive messaging, focusing on the needs of the whole family, are much needed in the CF community.

This new research study evaluates a course for children ‘Pause, Breathe, Be’ (Paws b), which was developed by the Mindfulness in Schools Project (MiSP) and follows on from a successful mindfulness group for parents of children with CF in Sussex also funded by Rockinghorse. For this study MiSP has granted exceptional permission for Paws b course to be delivered online to children with CF who receive CF care at the Royal Alexandra Children’s Hospital in Brighton.

Dr Sally Harris, clinical psychologist in Cystic Fibrosis at the Royal Alexandra Children’s Hospital, said: “Parents who took part in the initial course were really positive about the benefits of mindfulness for managing their situation. They also fed back that they thought mindfulness skills would be really helpful for their child, as well as siblings, to help them manage the stress, anxiety and burden of living with CF.

"As children with CF can’t meet in person due to the risk of cross infection, we are creating an online group through which children can learn self-care skills for managing stress, along with any difficult thoughts or feelings, whilst getting support from other children going through the same experiences.”

The group aims to start in October 2020 and will initially consist of the children and siblings of the parents who attended the parent’s mindfulness group.

The sessions will be held via video conference, and led by an experienced mindfulness trainer, and include a mindfulness exercise followed by an invitation to practice the skills learnt during the online session whilst at home.

“Mindfulness skills are particularly helpful for young people with CF as they often struggle with CF related fears for the future (hospital admissions, procedures, future health prospects) and with maintaining motivation to engage with daily treatments because they are so time consuming and can interfere with normal life” explained Dr Harris.

“We hope that mindfulness skills will help young people with CF to feel better equipped to deal with the demands of their treatment and better able to manage their emotional responses to stressful situations.”

By the end of the course, Dr Harris hopes that along with helping to create a connection with other families, the children will be better able to notice when they are feeling worried or upset, use the techniques they have learnt to help calm themselves and build resilience to stress by learning how to manage difficult situations in a gentle way.

Rhian Walsh, finance manager at Rockinghorse, explained why the charity was happy to provide the funding; “We are delighted to be able to support this project. We hope that by giving this support to children with CF and their siblings, it will help an often overlooked group to receive a high level of psychological support, help mindfulness become a normal part of their lives and promote resilience and more effective coping methods for the whole family.”

Currently, in the UK, there is a gap in the provision for children with CF and their families for support like this, so it is hoped that by evaluating children’s’ experience of this initial group , it will lead to a randomised controlled trial of Paws b course in CF across multiple hospitals and therefore more support to children and families throughout the U.K living with cystic fibrosis.

This research study forms part of a range of initiatives funded by Rockinghorse that helps support the emotional wellbeing of children and young people across Sussex. Along with this project, they have helped to fund a counselling service for staff at the Alex, an activities programme for young people at Chalkhill Child and Adolescent Mental Health Unit during lock-down and a specialist psychologist for young cancer patients.

For more information about this, or any of the work that Rockinghorse does, take a look at their website: rockinghorse.org.uk