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Purpose Self-regulation in eating is significant for enhancing life expectancy of people with cystic fibrosis (CF), but research with this population is scarce. Methods In a cross-sectional study, adults with CF completed a number of psychometric scales exploring typical eating behaviours that may increase calorific intake including motivations to eat palatable foods and scales that may be associated with decreased calorific intake: mindfulness, mindful eating and self-compassion. Results Findings suggested that motivations to eat palatable foods and eating behaviours correlate with higher BMI, while mindfulness, mindful eating and self-compassion did not reach significance. Mindfulness and mindful eating moderated the relationship between emotional eating and BMI, while self-compassion did not moderate this relationship. Conclusions There is a need to develop healthy and effective means of enhancing calorific intake, where this is indicated, adapting mindful eating principles to focus on increasing both self-regulation and pleasure in eating while reducing emotional eating may be one means of doing this. Level of evidence Level V, cross-sectional descriptive study.

To investigate the current psychosocial challenges faced by adults with Cystic Fibrosis (CF), while exploring attitudes and experiences of mindfulness and self-compassion. Mindfulness and self-compassion are important resources for supporting psychological and physical well-being, yet there is limited research exploring these positive psychology concepts in CF literature. Twenty UK domiciled adults with a diagnosis of CF, took part in a semi-structured interview. Using a thematic analysis approach, four themes were developed: (a) “I didn’t expect to be here”: Surpassing the CF life expectancy, (b) “Am I psychologically bringing this upon myself?”: Psychological complexities of CF, (c) “I’ve had to really learn to be kind to myself”: The importance of compassion and being self-compassionate, (d) “I think it’s a great tool”: The benefits of practising mindfulness. This research demonstrates a robust need for increased integration of accessible psychological practices into routine CF-care and self-care for adults with CF. Particularly, practises and interventions that draw on the concepts of mindfulness and self-compassion, which may benefit patient’s health and wellbeing profoundly.

Background Nutritional status and weight are closely linked to lung function and health status in cystic fibrosis (CF). The investigation of eating behaviours has shown mindfulness practices to be useful in modifying eating behaviours, particularly with obesity; to date, no research specifically explores how these concepts may be utilised within a CF population who face specific challenges in eating behaviours. Method Adult patients (n = 20, M = 8, age range 21–62 years) were recruited from a UK CF regional centre to take part in qualitative semi-structured interviews. Experiences of eating behaviours focusing on the use of mindful (or mindless) eating as barriers and enablers to achieving and maintaining optimal nutritional status were explored. Data were analysed using thematic analysis with a contextualist approach to understand how participants experienced eating behaviours within the context of health and weight status. Results Participants engaged readily in discussions of eating behaviour describing active self-regulation of food eaten and calorie intake. Participants who struggled to maintain weight employed strategies to increase calorie intake such as distraction and multitasking while eating. Most participants reported no pleasure in food, describing eating as another treatment to endure. Confusion existed around how to eat healthily for CF alongside co-morbid health conditions including diabetes, cholesterol and heart disease. Conclusion Participants were highly aware of their eating behaviours, engaging in intentional and deliberate preparations, which could be described as mindful, for making eating a more automatic or mindless activity. Modifications to usual mindful eating interventions are needed to support people with CF.

Self-compassion is increasingly recognised as an important and beneficial factor in quality of life and mental health-related research, but research within the adult cystic fibrosis (CF) population is scarce. In a cross-sectional study, 114 (56 female, 58 male) adults with CF completed and returned a series of validated questionnaires that assessed CF-related quality of life, negative emotional states (depression, anxiety and stress), self-compassion, and self-criticism. Quality of life and self-compassion were positively correlated, and each in turn were inversely correlated with negative emotional states and self-criticism. Negative emotional states correlated positively to self-criticism. Self-compassion and/or self-criticism moderated ten relationships between various sub-domains of quality of life and negative emotions. Psychological interventions that increase self-compassion may be beneficial for enhancing mental health and quality of life for adults with CF.

Objectives Previous qualitative data highlight why individuals with Cystic Fibrosis may be motivated to initiate in risky behaviours (smoking, excessive alcohol consumption and illicit drug use). To inform interventions aimed to reduce the occurrence of risky behaviours, we investigated how Cystic Fibrosis health care professionals perceive the issue of risky behaviours, providing insight into what interventions could work in practice. Methods This research had two phases of data collection. In phase one, nine Cystic Fibrosis Specialist Nurses participated in a semi-structured interview via telephone. In phase two, health care professionals, who work within a Cystic Fibrosis multi-disciplinary team, participated in a dissemination meeting. Results Cystic Fibrosis health care professionals identified that although risky behaviours were a major concern within the Cystic Fibrosis population, education regarding the adverse health effects of such behaviours is not embedded within practice, with the issue of risky behaviours being addressed on an individualised basis. Health care professionals suggested that they would welcome interventions, and that such interventions first need to raise health care professionals awareness and knowledge regarding risky behaviours before focusing upon patients. Discussion Within this research, health care professionals provided practical insight into the need for policy change for the prevention and reduction of risky behaviours by informing current advice and practice.

BackgroundTreatment adherence is a major concern in cystic fibrosis (CF), with accumulating evidence that health outcomes are worse in patients with lower levels of adherence. This study investigates how adherence differs for adults with CF during a weekday and a weekend day by examining the roles of sex, anxiety, depression, and lung function as predictors of adherence.Participants and procedureFifty-two adult participants with CF were recruited. Demographics and spirometry results were recorded. Participants completed the Hospital Anxiety and Depression Scale and two daily phone diaries in order to record their adherence to pancreatic enzymes, vitamins, physiotherapy and exercise. Based on previous findings, it was hypothesised that reported adherence would be higher during the weekend in comparison to weekdays, due to lower time pressure during the weekend.ResultsPaired sample t-tests indicated that overall participants had higher reported adherence during the weekend in comparison to weekdays, with sex, anxiety, depression and lung function being predictors of adherence.ConclusionsClinical implications and future directions are discussed, with an emphasis on the need for further qualitative research. We are now conducting another research project utilising qualitative interviews with participants to further investigate adherence within the CF population. Our aim is to identify the main adherence barriers and to develop interventions to improve treatment adherence in the CF population.

Health risk behaviours (HRBs) are prevalent within the cystic fibrosis (CF) population, and there is a lack of research around what influences their engagement. This research explored beliefs associated with HRBs within an adult CF population using qualitative semi-structured interviews. Participants' beliefs towards their CF and its life impact were investigated to explore reasons for engaging in HRB. A desire for normalcy was evident, often accompanied by engagement in everyday HRB as a method of minimising the illness identity. Evidence of a life-orientated illness perspective was also prevalent, with participants engaging in some risky behaviours for fun. Overall, there was a lack of knowledge on the consequences of HRB, with many participants reporting not being informed of these by clinicians. This research highlights a dilemma between clinical recommendations and personal life strategies undertaken by individuals with CF to support their identity.

Risky behaviours are prevalent within the cystic fibrosis (CF) population; however, there is a lack of research which has investigated risky behaviour engagement among adolescents with CF, with reasons for initiation currently being unknown, as no qualitative studies have been conducted. This research therefore examines knowledge, attitudes, and beliefs towards risky behaviours at an age commonly associated with initiation. Ten paediatric participants were recruited. Thematic analysis illustrated several psychological factors associated with risky behaviours. A desire for normalcy was evident, with this been associated with a desire to engage in normalised risky behaviours. Evidence of a life-orientated illness perspective was also prevalent, with participants believing that many individuals engage in risky behaviours for fun. Overall, there was a reported lack of knowledge on consequences of risky behaviours, with many participants not being informed of these by health care professionals (HCPs). This research provides insight into an area of CF paediatric care which could be improved on, with the provision of awareness regarding risky behaviours not being embedded within paediatric CF care. Consequently, this research demonstrates the need for interventions to be integrated into paediatric CF care for the prevention and reduction of risky behaviours.

Nutritional status is a key predictor of health outcomes and survival for individuals with Cystic Fibrosis (CF). A main concern is the maintenance of a healthy body weight by eating a high-energy and high-fat diet (Abbott et al., 2008). This diet is accompanied for most patients with pancreatic enzyme replacement therapy, and for some patients with fat soluble vitamins, oral supplements, and enteral tube feeding which further supports the high nutritional requirements (Powers et al., 2002). Nevertheless, inadequate intake in CF remains a major problem within CF populations due to a number of complex reasons including physiological factors such as anorexia or poor appetite (Durie and Pencharz, 1989), early satiety and abdominal pain (Pumariega et al., 1986). Social and psychological factors for inadequate intake in CF include feeling under pressure to eat (Abbott et al., 2008), and being afraid of choking (Murphy and Wootton, 1998). The latest Cystic Fibrosis Foundation Registry Report (2004) indicates that approximately 31% showed symptomatology consistent with malnutrition. This paper suggests possibilities for developing research further and enhancing behavioral interventions for malnourished individuals with CF. With a paucity of research on the experiences of eating in adults with CF, known information around eating in other populations should be explored. Findings in obesity research may provide useful suggestions for environmental and behavioral interventions with malnourished individuals until a healthy weight status is achieved.