Hall NJ, Rubin GP, Dougall A, et al. The fight for ‘health-related normality’: a qualitative study of the experiences of individuals living with established inflammatory bowel disease (ibd)
Department of Psychology, Durham University, Durham, England, United Kingdom Journal of Health Psychology
(Impact Factor: 1.22).
06/2005; 10(3):443-55. DOI: 10.1177/1359105305051433
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.
Available from: Leah Macaden
- "This distress is not only because they have to deal with the symptoms described above, but because they often experience fear and humiliation as a result of faecal incontinence, which has a profound effect on family, work, social life and iden- tity91011. In addition, they have to deal with the sense of loss of control, feeling 'dirty and smelly' and feeling they are unable to fulfil their potential at work and in sexual re- lationships [12, 13]. Moreover, the steroidal treatments can often induce side effects such as weight gain and mood swings , which might require treatment with antidepressants. "
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ABSTRACT: Mindfulness-based interventions have shown to improve depression and anxiety symptoms as well as quality of life in patients with inflammatory bowel disease (IBD). However, little is known about the experiences of this group of patients participating in mindfulness interventions. This paper sets out to explore the perspectives of patients with IBD recruited to a pilot randomised controlled trial (RCT) of mindfulness-based cognitive therapy (MBCT) about the intervention.
In a qualitative study nested within a parallel two-arm pilot RCT of mindfulness-based cognitive therapy for patients with IBD, two focus group interviews (using the same schedule) and a free text postal survey were conducted. Data from both were analysed using thematic analysis. Data and investigator triangulation was performed to enhance confidence in the ensuing findings.
Forty-four patients with IBD were recruited to the pilot RCT from gastroenterology outpatient clinics from two Scottish NHS boards. Eighteen of these patients (ten from mindfulness intervention and eight from control group) also completed a postal survey and participated in two focus groups after completing post intervention assessments.
The major themes that emerged from the data were the following: perceived benefits of MBCT for IBD, barriers to attending MBCT and expectations about MBCT. Participants identified MBCT as a therapeutic, educational and an inclusive process as key benefits of the intervention. Key barriers included time and travel constraints.
This qualitative study has demonstrated the acceptability of MBCT in a group of patients with IBD. Participants saw MBCT as a therapeutic and educational initiative that transformed their relationship with the illness. The inclusive process and shared experience of MBCT alleviated the sense of social isolation commonly associated with IBD. However, time commitment and travel were recognised as a barrier to MBCT which could potentially influence the degree of therapeutic gain from MBCT for some participants.
Available from: synapse.koreamed.org
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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.
Available from: Hedwig Te Molder
- "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. "
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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.
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