Ruth Howard

Psychosocial aspects of coeliac disease: A cross-sectional survey of a UK population

OBJECTIVES Coeliac disease (CD) is an autoimmune condition managed by a lifelong therapeutic gluten-free diet. Previous research suggests that the chronicity of CD, the limitations imposed by the gluten-free diet, and the risk of other associated diseases can have a negative impact on health-related quality of life (HRQoL) and psychological well-being. The aim of this study was to explore the illness perceptions and self-efficacy beliefs of adults with CD in the United Kingdom and to report their subjective levels of HRQoL and psychological well-being. DESIGN The study employed a cross-sectional postal questionnaire design. METHOD Participants (n= 288) were adults with CD recruited via Coeliac UK. Measures of well-being, HRQoL, self-efficacy, illness perceptions, and dietary self-management were analysed. Preliminary descriptive and univariate procedures were employed before bivariate tests of association or difference were carried out. Backward stepwise multiple regression analysis was used to investigate the predictive strength of variables on well-being, quality of life, and self-efficacy. Logistic regression was used to look at the influence of variables on adherence. RESULTS. Results indicate that HRQoL and psychological well-being were comparable to those found in previous related studies. Participants with weak beliefs in the serious consequences of CD and poorer emotional reactions to the condition had a greater likelihood of having enhanced HRQoL, improved psychological well-being, and higher self-efficacy. Strong beliefs in personal control and a greater perceived understanding of CD were associated with greater self-efficacy. CONCLUSIONS Perceived self-efficacy and illness perceptions could play a role in informing psychological interventions for individuals with CD.

Disordered eating practices in gastrointestinal disorders.

PURPOSE To systematically review evidence concerning disordered eating practices in dietary-controlled gastrointestinal conditions. Three key questions were examined: a) are disordered eating practices a feature of GI disorders?; b) what abnormal eating practices are present in those with GI disorders?; and c) what factors are associated with the presence of disordered eating in those with GI disorders? By exploring these questions, we aim to develop a conceptual model of disordered eating development in GI disease. METHODS Five key databases, Web of Science with Conference Proceedings (1900-2014) and MEDLINE (1950-2014), PubMed, PsycINFO (1967-2014) and Google Scholar, were searched for papers relating to disordered eating practices in those with GI disorders. All papers were quality assessed before being included in the review. RESULTS Nine papers were included in the review. The majority of papers reported that the prevalence of disordered eating behaviours is greater in populations with GI disorders than in populations of healthy controls. Disordered eating patterns in dietary-controlled GI disorders may be associated with both anxiety and GI symptoms. Evidence concerning the correlates of disordered eating was limited. CONCLUSIONS The presence of disordered eating behaviours is greater in populations with GI disorders than in populations of healthy controls, but the direction of the relationship is not clear. Implications for further research are discussed.

Illness beliefs and self-management in children and young people with chronic illness: a systematic review

To review the extent to which illness representations, based on Leventhals Common Sense Model, relate to self-management in children and young people with chronic physical health conditions. A systematic literature review was carried out to identify relevant studies and each included paper was assessed for risk of bias. Fifteen papers met criteria for inclusion within the review. The majority of studies were cross-sectional, and small sample sizes for some studies made it difficult to generalise findings. The method of measuring both illness representations and outcomes varied. Timeline, identity, control and consequences beliefs were the most frequently assessed domains of illness representations included within the studies. While there is variability, there are indications that control beliefs, specifically treatment control beliefs, are more consistently and strongly associated with self-management than other representation domains. Control beliefs should be targeted for intervention in studies trying to improve adolescent self-management. In addition, the relationship between illness representations and self-management needs to be considered within both developmental and systemic contexts. It is likely that the variation in self-management will be more fully explained in future research that explores the combined effects of individual representations and the influence of wider contexts.

Emotional exhaustion and defense mechanisms in intensive therapy unit nurses.

Contrary to its original conceptualization, research has found that emotional demands do not lead to burnout in nurses. According to psychoanalytic theory, unconscious defense mechanisms may protect nurses from conscious awareness of work-related anxiety. This prevents self-report and may explain research findings. The maturity of defense style influences how anxiety is managed. Immature defenses prevent the conscious processing necessary for resolution of anxiety. Therefore, it is hypothesized that the use of immature defenses will lead to emotional exhaustion. This cross-sectional study used questionnaires to explore the defense mechanisms of 87 Intensive Therapy Unit nurses. Although the sample endorsed a predominantly mature defense style, the use of immature defenses predicted emotional exhaustion. Also, lower levels of reported stress associated with emotional demands predicted emotional exhaustion. Although this strongly implies the mediating role of immature defense mechanisms, the results were not statistically significant.

Disordered eating patterns in coeliac disease:: a framework analysis

OBJECTIVE The need for dietary-management in coeliac disease may lead to the development of disordered eating patterns. A theoretical model of disordered eating has been proposed to explain disordered eating in coeliac disease. The aim of this study was to explore the experiences of typical and disordered eating in coeliac disease to gain a greater understanding of these processes and explore specific pathways within this model. METHODS We interviewed 21 individuals with coeliac disease, recruited from a previous database, about their experiences with food and food environments. Information about disordered eating status was assessed via questionnaire. The interviews were analysed qualitatively using Framework analysis, which was underpinned by the theoretical model of disordered eating in coeliac disease. RESULTS Experiences differed between participants scoring high on measures of disordered eating and those who scored low (typical eaters). Participants scoring high on measures of disordered eating were concerned about the consequences of their gluten-free diet on body image and they described eating patterns similar to binge/restrict cycles. Typical eaters reported being able to integrate their dietary self-management into their daily lives; however, general concerns around food and cross-contamination were associated with a restriction in food intake. CONCLUSIONS Coeliac disease has a varied impact on eating patterns. The need to follow a gluten-free diet and to be vigilant around food has to be balanced with concerns around food availability and cross-contamination which have the potential to contribute towards disordered eating attitudes and behaviours. The findings suggest that the theoretical model of disordered eating provides an adequate explanation of disordered eating patterns in coeliac disease.

Caring for a Dying Partner: The Male Experience

Objective: Caring for someone close who is dying, such as a spouse, is an emotive experience; however, there is little research examining the phenomenon of caregiving for a spouse at the end of life and of men’s experiences specifically. Existing literature suggests that men who are providing care are less likely to seek help than women, especially psychological and emotional support for themselves. The aim of the current study was to explore the lived experiences of men caring for a dying spouse or partner and their help-seeking for themselves during this time. Methods: Eight semi-structured interviews were conducted with men caring for their partner, who was receiving palliative care. Interviews were transcribed verbatim and analyzed using interpretative phenomenological analysis. Results: Three superordinate themes emerged from the data, “Illness Questions Everything,” “Constructing the Caring Role,” and “Help-Seeking at the Limit.” The arrival of a terminal illness into a partnership is traumatic, and while it can deepen relationships, it can also create distance. The carer role has conflicting demands and carers need to make sense of their experience in order for the carer role to be constructed as a source of purpose or meaning. Finally, the idea of seeking help for oneself as a carer during this time is seen as “incompatible,” unmanageable, and can only be considered if constructed as a “last resort.” Significance of Results: Men care too; however, they can feel confused by this role and unsure as to how this fits with their identity as a man. They make sense of this by identifying as a partner whose “duty” or “responsibility” is to provide care. Although this is an understandable stance, it puts them at risk of further emotional, psychological, and physiological difficulties if their own needs are not met. Men need to be supported during this time and their caring qualities need to be destigmatized and demystified so that they can feel more able to identify with the role and look after themselves while caring for their dying partner.

Development and Validation of the Coeliac Disease Food Attitudes and Behaviours Scale

Objectives Previous studies on coeliac disease suggest that attitudes towards the gluten-free diet may contribute to the development of disordered eating. This study describes the development and validation of the Coeliac Disease Food Attitudes and Behaviours scale (CD-FAB) to measure these behaviours in coeliac disease. Research Methods and Procedures Focus groups were used to develop 33 potential questionnaire items. These items were reviewed by service users and then distributed online to 157 adults with coeliac disease. Items were removed based on ceiling/floor effects, high interitem correlations (>0.7) and factor analysis. 11 items were retained. Exploratory factor analysis was then conducted. The psychometric properties of the final version of the CD-FAB were assessed via using an online platform. Results The CD-FAB had 11 items distributed across one factor assessing attitudes and behaviours towards food. These factors explained 44.1% of the variance in responding. The CD-FAB and its subscales had high internal consistency (Cronbachs alpha > 0.7) and psychometric validation indicated good convergent and discriminant validity. High scores on the CD-FAB are associated with psychological distress and an impaired quality of life. Conclusions The CD-FAB is a reliable and valid measure of food attitudes and behaviours in coeliac disease. As a new disease-specific instrument, it may be a useful tool for evaluating food concerns in individuals with coeliac disease in a clinical setting and for further exploring the development of disordered eating patterns in coeliac disease. Further research is required to assess the full potential of the CD-FAB.

M11 A preliminary biopsychosocial model of Vocal Cord Dysfunction (VCD)

Introduction Vocal cord dysfunction (VCD) can have a significant impact on breathing ability and quality of life.1 Psychological factors can contribute to the onset and maintenance of the condition.2 Little has been written about the patient experience of VCD; therefore this study sought to understand what it is like to live with the condition and develop a preliminary model of VCD. Methods Six adults diagnosed with VCD were interviewed and full transcripts of each interview were analysed via Interpretive Phenomenological Analysis.3 Six themes were generated reflecting the experiences of living with VCD. Next, the relationships between the themes were explored diagrammatically for each participant. Key phenomena or processes were fed into a summary cross-case diagram, which hypothesised how common aspects of the VCD experience may affect quality of life. Results It is theorised that three key elements are interacting to influence quality of life: (1) bodily sensations, such as throat tightening, wheeze and cough can feed into a cycle of panic that exacerbates symptoms; (2) unpleasant or traumatic memories can lead to hyper-vigilance for symptoms, worry and social withdrawal; (3) enabling patients to understand, prepare and cope with the physical and mental aspects of VCD can reduce the impact of VCD on quality of life. Furthermore, environmental factors, such as the general lack of knowledge about the condition, can exacerbate negative experiences of VCD. Conclusions We posit a biopsychosocial model of VCD which requires multidisciplinary treatment. In addition to speech and language therapy for throat-based symptoms, psychological interventions should be considered to address both thoughts about VCD and unpleasant memories. There is also an urgent need to improve and disseminate knowledge of the condition generally amongst medical professionals. References 1 Mansur AH. Vocal cord dysfunction. In: Palange P, Simonds AK, eds. European respiratory society handbook: Respiratory medicine. 2nd edn. Sheffield, England: European Respiratory Society, 2013: 274–279 2 Morris MJ, Oleszewski RT, Sterner JB, Allan PF. Vocal cord dysfunction related to combat deployment. Mil Med. 2013;178(11):1208–12 3 Willig C. Introducing qualitative research in psychology. Buckingham: Open University Press, 2009