When Family Don’t Acknowledge: A Hermeneutic Study of the Experience of Kinship Stigma in Community-Dwelling People With Inflammatory Bowel Disease (original) (raw)
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Journal of Advanced Nursing
Aim: to explore experiences of stigma in people with inflammatory bowel disease Background: Diarrhoea, urgency and incontinence are common symptoms in inflammatory bowel disease. Social rules stipulate full control of bodily functions in adulthood: poor control may lead to stigmatisation, affecting patients' adjustment to disease. Disease-related stigma is associated with poorer clinical outcomes but qualitative evidence is minimal. Design: An interpretive (hermeneutic) phenomenological study of the lived experience of stigma in inflammatory bowel disease. Methods: Forty community-dwelling adults with a self-reported diagnosis of inflammatory bowel disease were recruited purposively. Participants reported feeling stigmatised or not and experiencing faecal incontinence or not. Unstructured interviews took place in participants' homes in the United Kingdom (September 2012-May 2013). Data were analysed using Diekelmann's interpretive method. Findings: Three constitutive patterns-Being in and out of control, Relationships and social Support and Mastery and mediation-reveal the experience of disease-related stigma, occurring regardless of continence status and because of name and type of disease. Stigma recedes when mastery over disease is achieved through development of resilienceinfluenced by humour, perspective, mental wellbeing and upbringing (childhood socialisation about bodily functions). People travel in and out of stigma, dependent on social relationships with others including clinicians and tend to feel less stigmatised over time. Conclusion: Emotional control, social support and mastery over disease are key to stigma reduction. By identifying less resilient patients, clinicians can offer appropriate support, accelerating the patient's path towards disease acceptance and stigma reduction.
2014
A stigma is ‘an attribute that is deeply discrediting,’ often contravening social norms, and perceived by others as being undesirable. Inflammatory Bowel Disease (IBD) is a chronic illness characterised by symptoms of diarrhoea, urgency, and vomiting occurring in a relapsing and remitting pattern. Regular or temporary loss of bowel control is a prominent feature of the disease and may lead to stigmatisation through infringement of social hygiene rules. Although stigma in IBD has been measured in quantitative studies, there is a dearth of qualitative evidence. This Heideggerian (hermeneutic) phenomenological study explores the lived experience of IBD-related stigma. Using purposive stratified sampling, 40 members of a national IBD charity were recruited. Participants did or did not experience faecal incontinence, and did or did not feel stigmatised. Unstructured individual interviews (digitally recorded and professionally transcribed) took place in consenting participants’ homes betw...
Stigma, deviance and morality in young adults’ accounts of inflammatory bowel disease
Sociology of Health and Illness
For young adults with inflammatory bowel disease (IBD), perceived stigma has been found to be a salient concern. Drawing on interviews with individuals with IBD aged 18-29 (n = 16), this article uses rhetorical discourse analysis to explore how stigma is discursively constructed by young adults, with a focus on the moral underpinnings of the participants' talk. Their representations showed both felt stigma and enacted stigma; principally related to the perceived taboo surrounding the symptoms of their condition, which often led to the non-disclosure or concealment of the condition. The different ways in which stigma is manifested in the accounts present a challenge to recent arguments questioning the relevance of this concept in chronic illness research, though it was found that it is not adequate to look at stigma alone and, given the unstable nature of IBD, negotiating stigma in relation to possible charges of deviance is a pertinent issue for these young adults. For instance, non-disclosure because of shame could result in individuals experiencing blame. Accounts were constructed through a range of discursive strategies, allowing the participants to present themselves in morally appropriate ways throughout. Suggestions are made about future directions in addressing stigma and deviance in relation to this cohort.
Clinical and experimental gastroenterology, 2016
Chronic illness stigma is a global public health issue. Most widely studied in HIV/AIDS and mental illness, stigmatization of patients living with inflammatory bowel disease (IBD), chronic autoimmune conditions affecting the digestive tract, has garnered increasing attention in recent years. In this paper, we systematically review the scientific literature on stigma as it relates to IBD across its three domains: perception, internalization, and discrimination experiences. We aim to document the current state of research, identify gaps in our knowledge, recognize unique challenges that IBD patients may face as they relate to stigmatization, and offer suggestions for future research directions. Based on the current review, patients living with IBD may encounter stigmatization and this may, in turn, impact several patient outcomes including quality of life, psychological functioning, and treatment adherence. Significant gaps exist related to the understanding of IBD stigma, providing o...
Knowing ‘ME’ Knowing You: The Discursive Negotiation of Contested Illness within a Family
Journal of Depression & Anxiety, 2012
Although CFS/ME (Chronic Fatigue Syndrome/Myalgic Encephalomyelitis) has been heavily researched and contested, there is a distinct absence of studies which consider the relationship between the illness and family process. This is a striking omission given the centrality of the family to the proximal management of the illness. This study used a discourse analytic methodology to consider how talk about illness is locally negotiated by a family in the context of a single family interview. The individual in the family who had been diagnosed with CFS/ME was a sixteen yearold adolescent girl who had experienced symptoms for 18 months. Our findings suggested that family discourses about CFS/ME were polarized around the issue of intentionality. Two family members deemed the illness to represent 'genuine illness' and two regarded the illness to be intentionally used for advantage. These illness accounts were considered as both constitutive-off and constituted-by family conflict. We consider the implications of these findings in developing clinical formulations of the illness and in determining how best to support recovery. Journal of Depression and Anxiety Jo urna l o f D e pr essio n a n d A nxiety
Impact of perceived stigma on inflammatory bowel disease patient outcomes
Inflammatory Bowel Diseases, 2009
Background-Perceived stigma has been linked to disease outcome in several chronic illnesses. Stigmatization of illness often leads to increased psychological distress and poorer quality of life. While body stigma has been identified as a specific inflammatory bowel disease (IBD) patient concern, no study to date has systematically investigated the presence of stigma in IBD or its effects on disease course and management.
Quality of Life Research
Purpose To compare the experiences of perceived stigma (PS) in both patients with irritable bowel syndrome (IBS) and inflammatory bowel disease (IBD) and examine its relationship to patient-reported outcomes in both patient populations. Methods IBD and IBS patients were recruited from an outpatient gastroenterology clinic and online via support message boards and classifieds. Participants completed a series of questionnaires to measure the perception of illness stigma, psychological functioning, and clinical and demographic data. Results Two hundred and sixty-nine IBS and 227 IBD patients participated. IBS patients were more likely to report high levels of perceived stigma across a wider range of sources, with the largest difference being for health care providers. Twenty-seven percent of IBS patients reported moderate to high levels of perceived stigma, compared with 8% of IBD. While perception of stigma was correlated with poorer patient-reported outcomes in both patient groups, correlations were larger for IBD compared with IBS. Conclusions This study demonstrates that both IBD and IBS patients perceive stigma about their illness. As demonstrated by increased depression and anxiety, decreased self-esteem and self-efficacy, and lower quality of life in both patient groups, PS was shown to have a negative impact on clinical outcomes.
Experiencing the care of a family member with Crohn’s disease: a qualitative study
BMJ Open, 2019
ObjectivesTo explore the experiences of caregivers living with relatives affected by Crohn’s disease (CD) in a context in which the family provides social support.DesignA qualitative study based on a phenomenological approach was conducted through in-depth interviews.SettingParticipants living in Alicante (Spain) were recruitedParticipantsEleven family caregivers of people with CD were interviewed.MethodsThe in-depth interviews took place in the participants’ homes and were audio recorded and then transcribed for a qualitative thematic analysis.ResultsFive themes and accompanying subthemes were identified: (1) adaptation to the caring experience, (2) dichotomy ‘with or without me’, (3) unending burden, (4) need for knowledge and control of the disease, and (5) getting used to CD and normalising life.ConclusionThe findings contribute to an increase in the knowledge and comprehension of the experience of being the caregiver of a relative with CD, which could be useful for professional...
Psychology & Health, 2007
Individual in-depth interviews with 14 people with chronic fatigue syndrome (CFS) were conducted, focusing on the experience of living with CFS. The interviews were transcribed verbatim and were analysed for recurrent themes using interpretative phenomenological analysis (IPA). Here we present two inter-related themes: “Negotiating a diagnosis” and “Negotiating CFS with loved ones”. Participants reported delay, negotiation and debate over diagnosis: further, they perceived their GPs to be sceptical, disrespectful and to be lacking in knowledge and interpersonal skills. However, participants found delegitimising encounters with their partners more difficult to deal with. Participants viewed such delegitimation as a form of personal rejection; they were hurt by their loved ones’ reactions and subsequently pondered the price of love, respect and friendship. The findings are discussed in relation to extant literature, and recommendations for future research are suggested