Researchers at BCU developed several tools to help people with Cystic Fibrosis (PwCF) maintain healthy eating habits and stick to demanding treatment regiments. In collaboration with healthcare practitioners, these tools improved patient outcomes and provided the tools to identify when patients engage in behaviours that might harm their health.
Research summary
Cystic Fibrosis is a life limiting disease that causes damage to the lungs, digestive system and other organs throughout the body. It cannot be cured, but the symptoms can be managed with regular treatment.
Treatment regimens for PwCF are burdensome, taking between 3-4 hours daily and do not always produce the required results, meaning patients often lose motivation and suffer severe health consequences.
PwCF also have problems maintaining a healthy diet due to the need for a higher calorie intake and eating difficulties that increase reliance on processed foods. This can lead to further complications, including negative effects on mental health.
Through their research into the needs of PwCF, the team increased health practitioner knowledge of patient’s attitudes towards treatment, presented ways they can reduce their health risks and engage in healthier eating behaviours.
Research background
Cystic Fibrosis care presents a difficult challenge for clinicians, and patients, and resources are typically focused on managing physical symptoms.
Clinicians report having little psychology experience and knowledge, and clinical psychologists have limited resources which are focused on serious mental health issues.
Working alongside health practitioners and PwCF, the researchers discovered a series of areas threatening the healthy management of Cystic Fibrosis, namely:
- Patients engaged in risky behaviours such as smoking to offset the psychological impact of treatment
- Patients relied on unhealthy foods to reach the target weight for the condition, resulting in poorer mental and nutritional health
- Healthcare practitioners had no standardised way to screen patients who were at risk of harmful behaviours.
The team then used their research into these factors and created toolkits to help meet these challenges.
Research outcomes
The research team collaborated with health care practitioners to develop interventions based on their research, with a view to improving psychological support for PwCF:
A toolkit to identify patients at higher risk of non-adherence and health risk behaviours
Clinicians from The West Midlands Adult Cystic Fibrosis Team now use the screening tool, which aims to identify those at risk of behaviours that might affect their treatment, as part of their annual review with patients.
During the Covid-19 pandemic, clinical care was moved online but clinicians continue to help PwCF identify risky behaviours, keeping patients on track with their care.
A Guide to Mindful Eating for PwCF
The guide to the psychology of eating behaviours for people living with Cystic Fibrosis provided information to clinicians with limited existing knowledge on this topic and was used to identify the most effective ways of using mindful eating behaviours to support patients.
When used by PwCF, the guide helped them to identify unhealthy habits, allowing them to maintain a high calorie diet while reducing the risk of diabetes and other illnesses.
Clinicians have noted that their practice of care has been improved because of proposals put forward by the research team. For example, the clinical psychologist the team worked with noted:
