Investigating health risk behaviour in people with cystic fibrosis

BCU researchers have been investigating the key psychological factors behind the eating behaviours and other acts that negatively affect the health of people living with cystic fibrosis.

Image of a doctor assessing a patient with cystic fibrosis

Research background 

Life expectancy for people living with cystic fibrosis (CF) has rapidly increased in the UK from 18 to 47 years.

This brings new challenges to supporting the mental and physical wellbeing of people living with CF, as complications increase with age.

Dr Egan, Dr Mantzios and Dr Keyte’s research began in response to clinicians highlighting concerns regarding adherence to guidance on the self-management of CF, such as:

  • Medication and behavioural regimens;
  • Health risk behaviours (HRB);
  • Physiological and psychological issues around eating.

Research aims 

Dr Egan, Dr Mantzios and Dr Keyte have undertaken extensive research on both health risk behaviour (non-adherence, drinking, smoking and illicit drug use) and eating behaviour in people living with cystic fibrosis.

This research has broadly aimed to identify and understand the key psychological factors involved in risk behaviours and eating behaviours.

Specifically, the aim is to develop psychological tools to facilitate health care professionals (who may not have extensive psychological training) to:

  • Identify and better support patients who may be at risk of engaging in health risk behaviours;
  • Support patients in developing effective means of self-regulating eating behaviours for optimal health.

How did you carry out the research?

The programme of research has involved working closely with local NHS trusts, including Heartlands and University Hospitals North Midlands, and the Cystic Fibrosis Trust.

It has been facilitated through collaboration with CF clinicians (including physicians, dietitians and clinical psychologists) and people living with CF across a range of clinical settings.

Self-report questionnaires, interviews, focus groups, online data and dissemination feedback events have been utilised in order to collect a diverse range of behavioural and psychological data.

Outcomes and impact - Mindful eating

Mantzios, Egan and Patchell (2016) identified factors related to the overconsumption of food in the general public that may be used in clinical practice to enable PWCF to consume additional calories as required.

Mindful eating (eating while focusing on the food being consumed) may also help support people living with CF to achieve their optimal weight through helping them to ‘self-regulate’ their eating behaviour (Egan and Mantzios, 2016).

More recent work by Egan and Mantzios (2020) highlights the psychological and emotional issues with eating behaviours, including how time-consuming eating behaviours can be, a lack of pleasure in eating, and eating being seen as part of the prescribed medical regimen.

The research also highlighted the fluctuating nature of CF as being particularly problematic for self-regulating eating.

Because not all aspects of mindful eating are helpful all of the time for people with CF, BCU’s researchers have developed a flexible tool to identify the most effective ways of using elements of mindful eating behaviours to support individuals with their specific needs.

They have focused on identifying pleasurable aspects of food and eating which are often missing, and on self-regulating eating with a view to making this adaptable to suit individual needs of people with CF at different times.

To access the tool, please click here. Please note that the tools provided are not intended to override or replace professional medical or clinical advice, and are provided by Birmingham City University for informational purposes only.

In response to Covid-19, the BCU team have created an additional tool which can be used by patients and returned to Health Care Professionals to facilitate an online discussion around eating behaviours and how to use some principles of mindful eating behaviours to improve self-regulation.

These are currently being evaluated by Health Care Professionals and people with CF.

For health practitioners and clinicians

If you are a health practitioner and would like to provide feedback on your use of the “Guide to the psychology of eating behaviours for people living with Cystic Fibrosis” please click here to complete a short survey.

Outcomes and impact - Health risk behaviours

Research on health risk behaviour in adults living with CF highlights that adherence to treatment is higher during the weekend than weekdays and is predicted by sex, mental health status and lung function (Keyte et al., 2017).

Findings highlighted barriers to treatment adherence, and subsequent studies (Keyte et al., 2019) explored the importance of timely advice on health risk behaviours and dietary recommendations.

Further research (Keyte, 2019) exploring risk behaviours showed that a desire for normalcy was motivation for risk behaviours, in which drinking or drug use may function as a method minimising illness identity.

The research highlighted a dichotomy between clinical recommendations and risky behaviours undertaken by people living with CF which served as a means to maintain psychological wellbeing and identity.

Findings highlighted a lack of patient knowledge of the impact of health risk behaviours with such information not being routinely provided. 

The research demonstrated the need for interventions to be better integrated into paediatric and adult CF care.

Dissemination activities highlighted the concerns of CF clinicians regarding both the lack of patient knowledge around adverse effects of risk behaviours, and their own lack of education in the area, and the desire for more effective screening to be embedded into practice (Keyte et al., 2019).

‘Encouraging discussion regarding health risk behaviours’ is a screening tool to provide Health Care Professionals with a set of questions to be used to encourage a discussion regarding coping with CF and the engagement in health risk behaviours.

The aim is to facilitate the identification of psychological factors that may increase the risk of non-adherence and engagement in health risk behaviours.

Questions are accompanied by explanatory notes signposting potential risk factors.

In response to Covid-19, we have created an additional tool which can be used by patients and returned to Health Care Professionals to facilitate an online discussion around the psychological implications of CF and the engagement of health risk behaviours.

The tools are currently being evaluated by Health Care Professionals and people with CF.

To access the tool, please click here. Please note that the tools provided are not intended to override or replace professional medical or clinical advice, and are provided by Birmingham City University for informational purposes only.

For health practitioners and clinicians

If you are a health practitioner and would like to provide feedback on your use of the “Guide for discussing health risk behaviours in Cystic Fibrosis” please click here to complete a short survey.


Dr Helen Egan

Reader in Health Psychology

Research areas include the role of mindfulness, self-compassion and self-kindness in health and wellbeing, eating behaviours and barriers and facilitators of adherence to medical regimens in people living with Cystic Fibrosis and in clinical weight management and obesity. Helen is interested in how these impact on health and academic attainment of students in higher education, and the impact on health of working in job roles that demand a high level of occupational compassion including NHS workers, religious ministry and the emergency services.


Rebecca Keyte Staff Profile Picture 100x150

Dr Rebecca Keyte

Lecturer in Health Psychology

Rebecca’s doctoral research has provided a qualitative exploration into experiences and beliefs around risky health behaviours within a Cystic Fibrosis (CF) population, with Rebecca’s research findings informing current advice and practice to prevent and reduce the occurrence of risky health behaviours specifically within the CF population.


Dr Michael Mantzios

Reader in Health Psychology / Mental Health and Wellbeing Lead

Michael is teaching several topics in Psychology, and is mainly interested in Health Psychology outcomes. He is a Senior Fellow of the Higher Education Academy, and is working on research projects that relate to obesity, eating behaviours, mindfulness, self-compassion, self-kindness, colouring books and Higher Education.