This article reports on the experiences of individuals living with IBD and identifies a range of coping strategies used by them. Qualitative data from 15 individual interviews and three focus groups were analysed using a grounded theory approach. The main focus is on the emergent core concept of 'health-related normality'. A theoretical framework is proposed to explain how individuals with IBD assess their health-related normality, their fight to maintain it and their need to retain the appearance of normality to others. It is concluded that individuals maintain their health-related normality along certain time and context sensitive continuums rather than fitting into a distinct typology.
[Show abstract][Hide abstract] ABSTRACT: The purpose of this study was to describe and explore the experience process of life of patients with Crohn's disease.
Using a grounded theory methodology, 24 interviews were performed with 7 men and 5 women, 17-47 years of age, suffering from Crohn's disease.
'Tuning of two conflicting lives' was identified as the core category, and 5 subcategories were identified and they were integrated into the core category. The identified outcomes were 'Living a withdrawn life', 'coping flexibly', 'drifting with tangled emotions' and 'maintaining long-term remission'.
When caring for these patients, it is important to identify needs, allow patients to express what they want at that moment and support them in maintaining a daily life that can be perceived as normal.
Journal of Korean Academy of Nursing 06/2013; 43(3):409-19. DOI:10.4040/jkan.2013.43.3.409 · 0.38 Impact Factor
"She identifies family as important not only as the location where much of everyday life takes place but also for its constitutive role in constructing how one deals with disruptive events such as being diagnosed with a chronic illness. This is not a once-off event but an ongoing 'process of normalising family practices which are construed as predictable and stable, whilst encompassing change and uncertainty' (Gregory 2005: 389, see also Hall et al. 2005). By analysing dinner conversations between CD patients and their close relatives, we hope to gain more insight into how people deal with dietary restrictions on an ongoing basis in their everyday life. "
[Show abstract][Hide abstract] ABSTRACT: Although it is recognised that a gluten-free diet has many social implications for coeliac disease patients, not much is known about how such patients actually manage these implications in their everyday interactions. This article examines how dietary restrictions are treated by patients and their families. Data from recorded mealtime conversations of seven Dutch families with children suffering from coeliac disease were analysed using discursive psychology. We found two main discursive strategies by which patients and their families manage the diet during mealtime interactions. A reference to pleasure is used to manage the tension between the child's agency and parental responsibility in the face of health requirements and, by softening the denial of food, the diet is normalised and treated as a shared family practice. The analysis shows that the gluten-free diet is demedicalised and treated as a matter of choice rather than prescription. We conclude with the practical implications of these findings.
Sociology of Health & Illness 10/2012; 35(4). DOI:10.1111/j.1467-9566.2012.01519.x · 1.88 Impact Factor
"Another personality characteristic, emphasized in IBD patients, is perfectionism ; its negative impact in IBD is probably explained by its relationship with negative cognitive biases, heightened reactivity to stressors, and feeling pressured to be and look perfect. The latter may be particularly detrimental for IBD patients because these conditions are often accompanied by stigma, shame, feeling of dirty, and a burden . The above investigators have shown a relationship between perfectionism and the psychological impact of IBD, so as the trait was associated with emotional preoccupation coping a maladaptive coping way with disease. "
[Show abstract][Hide abstract] ABSTRACT: Inflammatory bowel disease (IBD) including Crohn's disease (CD) and ulcerative colitis (UC) is a chronic and disabling disease with unknown etiology. There have been some controversies regarding the role of psychological factors in the course of IBD. The purpose of this paper is to review that role. First the evidence on role of stress is reviewed focusing on perceived stress and patients' beliefs about it in triggering or exacerbating the course of IBD. The possible mechanisms by which stress could be translated into IBD symptoms, including changes in motor, sensory and secretory gastrointestinal function, increase intestinal permeability, and changes in the immune system are, then reviewed. The role of patients' concerns about psychological distress and their adjustment to disease, poor coping strategies, and some personality traits that are commonly associated with these diseases are introduced. The prevalence rate, the timing of onset, and the impact of anxiety and depression on health-related quality of life are then reviewed. Finally issues about illness behavior and the necessity of integrating psychological interventions with conventional treatment protocols are explained.
Gastroenterology Research and Practice 06/2012; 2012(3):106502. DOI:10.1155/2012/106502 · 1.75 Impact Factor
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