Title: Development of a novel family focused intervention to promote physical activity among young people with cystic fibrosis and their families.
Funder: Department of Health and Social Care

Abstract: Background Physical activity is highly recommended in the management of cystic fibrosis by healthcare professionals and cystic fibrosis organisations around the world. Physical activity (including exercise) has the potential to improve predictors of survival among people with cystic fibrosis (including aerobic capacity and lung function), reduce symptoms of stress, depression and anxiety, and increase quality of life. Despite the physical, psychological and social benefits associated with physical activity, it is estimated that only a third of children and young people with cystic fibrosis are meeting national guidelines. Aims and Objectives The aim of this research is to use the Person-Based Approach to develop and refine an intervention to promote physical activity among children (aged 6-12 years) with cystic fibrosis and their families. Specific objectives include: Developing Guiding Principles to summarise the core objectives and features of the intervention and building a Logic Model detailing the processes of change. Engaging with key stakeholders (PPI) to (a) refine the Guiding Principles, (b) co-create intervention content to support physical activity among children with cystic fibrosis and their families, (c) make data-informed refinements to the intervention, (d) ensure dissemination materials are appropriate. Utilising iterative qualitative research to ensure the intervention content and delivery is feasible, acceptable, engaging and persuasive; including PPI workshops, think aloud interviews and retrospective interviews. Refining Guiding Principles, Logic Model and intervention content where required. Methods We will use the widely utilised Person Based Approach to develop Guiding Principles, Logic Model, and intervention content to support physical activity among children with cystic fibrosis and their families. Stage one will comprise the development of Guiding Principles, Behavioural Analysis and Logic Modelling. Stage 2 will be the development and refinement of the intervention materials using workshops and think aloud interviews. Stage 3 will utilise retrospective interviews to assess the acceptability and feasibility of the intervention. Timelines for delivery The proposed work will be completed in 14 months. Preparatory phase: protocol development and ethical approval will be secured prior to the commencement of the project. Recruitment of individuals to the PPI group will also commence. Months 0-3: completion of stage 1. Months 3-8: completion of stage 2. Months 8-14: completion of stage 3, drafting final report and publications, and dissemination of findings. Anticipated Impact and Dissemination Our overall aim is to provide support for children and their families to be more physically active. The insights from this project will be shared with various stakeholders; healthcare professionals, people living with cystic fibrosis and their families, the Cystic Fibrosis Trust and the Cystic Fibrosis Foundation. Dissemination will occur via the project website and social media channels (already established and active), peer review publications, and national conference presentations. This research will inform a larger program of research for which funding will be sought to enable pilot and efficacy testing of the intervention. This work has the potential to improve physical activity among children with cystic fibrosis and their families, which can lead to substantial improvements in physical and mental health and well-being.

Lay abstract: Aim: To develop and try out a novel family focused intervention to support physical activity among children (between the ages of 6 and 12 years) with cystic fibrosis and their families. Background: Physical activity has a positive impact on both the physical and mental health of people with cystic fibrosis. It is therefore widely encouraged as part of the treatment and management of the condition. However, many individuals with cystic fibrosis are not as active as recommendations suggest. This can have long term impacts; including missing out of social activities, reduced physical fitness, and reduced life expectancy. Methods: We will first develop an intervention to support children with cystic fibrosis, and their families to be more active. Whilst we do not know exactly what the intervention will look like, it will include games, quizzes, animations and videos to enable families to plan and try various physical activities together. The intervention will be designed to support activity, rather than telling people what to do. This means that each family is free to choose activities that suit them. We will develop this using a Person Based Approach, which means we will look at existing research, theories, and the thoughts of children with cystic fibrosis and their families to ensure the intervention is effective and suitable. Once the intervention is developed, we will test it on a small scale. We will then be able to make changes to the intervention if we need to. Patient and Public Involvement: Children and young people with cystic fibrosis and parents/carers have contributed significantly to the design of this research. Specifically, the overall idea of this project was informed by a series of meetings with PPI groups. Children with cystic fibrosis and their families will continue to be involved throughout. In addition to our PPI co-applicants, we will set up a patient advisory group (~ 8), utilising our links with the Cystic Fibrosis Trust, and work with them at key stages throughout the project. Study outputs and dissemination: This study will inform the development an intervention to increase physical activity in children with cystic fibrosis and their families. We will publish results of this study widely in scientific journals and other publications accessible to clinical staff, patients and carers. We will work with the patient/parent/carer group to develop dissemination material to reach a large proportion of the cystic fibrosis community. We have an active social media presence (Facebook and Twitter) and will use these channels to keep the community informed about our progress throughout. We will ensure that healthcare professionals are informed of our work through engagement with the Cystic Fibrosis Exercise Network, the Cystic Fibrosis Trust, and the Association of Chartered Physiotherapists in Cystic Fibrosis.

Research activity codes: 5.6 PSYCHOLOGICAL AND BEHAVIOURAL;5.7 PHYSICAL
Health categories: CONGENITAL DISORDERS