Psychological care is an essential part of any effective treatment plan for a life limiting medical condition such as cystic fibrosis. Many individuals with cystic fibrosis develop effective coping skills to manage the physical symptoms, treatment burden, psychological and social factors that can have a negative impact on quality of life. At other times, these demands can feel more challenging, and higher levels of anxiety and depression are common in individuals with cystic fibrosis and their caregivers. This can be just as damaging to a person’s quality of life as the physical effects of the illness. In addition, it can lead to decreased lung function, lower BMI, worse treatment adherence and more frequent hospitalisations. Battling against the effects of the condition can take so much of your time and energy that it can get in the way of the things that matter to you. Children and young people who are cared for in terms of their medical and psychological wellbeing are more likely to adjust to any challenges arising from their condition, enabling them to lead as normal a life as possible. Clinical psychologists embedded in CF teams support ‘ordinary families in extraordinary circumstances’.
Clinical psychologists work across the lifespan, and an individual and their family may need support at different developmental stages; newborn, infancy, toddlerhood, school age and adolescence. Even resilient families will find that there are times that they struggle more than others. Common stressors in cystic fibrosis include:
Clinical psychologists do not just focus on reducing psychological difficulties associated with cystic fibrosis when it arises, but aim to promote wellbeing, resilience and ‘living well’ with illness to prevent problems occurring. All members of the multidisciplinary team can contribute to the psychological wellbeing of children with cystic fibrosis. Occasionally, it may feel that a more targeted piece of work with the clinical psychologist in the team is needed. Common pieces of work include:
The clinical psychologist can also discuss any concerns you have about things that are not necessarily related to cystic fibrosis, and help to identify other places for you to get support.
Clinical psychologists working in paediatric health have a range of techniques for supporting children, young people and their families. A meeting can be arranged at a time that suits you; either tagged onto the end of a clinic, or a different time. The focus of these meetings depends on the difficulties you are experiencing; it might be to explore the link between physical and mental health, to think about unhelpful patterns of thoughts, feelings and behaviours, to identify things within your control that might be getting in the way of what you value, to talk about how to reduce tension around doing treatments, or to explore more emotive topics. These sessions are confidential unless a risk to yourself or others is identified, or if you give consent to share it with other members of the team.
You and your child will meet the clinical psychologist regularly during your routine clinic appointments so that you can get to know them and feel comfortable raising any concerns. They will try to meet with most families at the pre-annual review appointment to check on any issues that have arisen in the last 12 months, and to complete two wellbeing screening questionnaires (GAD-7 and PHQ-9). If you would like to discuss something in between these times, you are welcome to contact the clinical psychologist on 01392 403187, or pass a message through any member of the multidisciplinary team.
Resources:
New 2024 document: CF Trust information, Clinical Psychology for people with Cystic Fibrosis and families and carer
CF Trust Psychology home page for lots of psychology links
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