The experience of stigma in people with inflammatory bowel disease with or without incontinence:a hermeneutic phenomenological study - A thesis submitted in partial fulfilment of the University’s requirements for the Degree of Doctor of Philosophy September, 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 between May and November 2012. Data were analysed using Diekelmann’s hermeneutic method. Seven relational themes (present in some transcripts) and three constitutive patterns (present in all transcripts) emerged. IBD-related stigma is a complex experience, mostly of anticipated or perceived stigma, which often decreases over time. Stigma changes according to social settings and relationships, but arises from the challenges the disease presents in maintaining social privacy and hygiene rules. Stigma resilience appears most likely in those with a positive sense of control, a support network (particularly of close and intimate others) which suits their needs, and mastery over life and illness. IBD-related stigma occurs regardless of continence status and can cause emotional distress. Time, experience, and robust social support enhance stigma resilience. Further research is needed to confirm features which enable resilience, and to develop stigma-reduction strategies that will promote resilience in this patient group

Access to inflammatory bowel disease healthcare for patients with LGBTQI+ identities

No abstract - this was an invited commentary piece

Regular clinical supervision to enhance wellbeing in inflammatory bowel disease specialist nurses: a small pilot study

Background Increasing demands on Inflammatory Bowel Disease Clinical Nurse Specialists (IBD-CNSs) can create overwhelming workloads, leading to stress and burnout. Aim To assess the potential for cognitive behavioural therapy (CBT)-based clinical supervision to enhance IBD-CNS wellbeing. Design Using exploratory qualitative research we interviewed IBD-CNSs who had participated in CBT-based clinical supervision sessions delivered previously in one UK hospital by a psychotherapist. Interviews were audio-recorded, then transcribed and anonymised by an independent transcriptionist. Data were analysed thematically. Findings Four nurses participated. Four themes emerged: ‘Surprise benefits’, ‘Learning from others’, ‘Thinking differently to change self and practice’ and ‘Features of clinical supervision sessions.’ Participants found group CBT-based supervision helpful for thinking differently about work-related challenges; all wanted to continue but were concerned about accommodating clinical supervision in already-busy schedules. Conclusions Regular CBT-based clinical supervision has the potential to enhance wellbeing of IBD-CNSs. Further research with more participants can confirm these preliminary findings

Development of self-management in pediatric inflammatory bowel disease: a qualitative exploration

Background: Self-management programs in pediatric chronic conditions, such as asthma and diabetes were effective in improving health-related outcomes. Similarly, self-management in the context of adult in inflammatory bowel disease (IBD) safely reduced healthcare costs. Nevertheless, evidence on self-management in pediatric IBD is scant. This study aims to explore self-management in pediatric IBD by exploring the childhood experience of IBD and how it is understood by the participants. Methods: Using a constructivist grounded theory approach, seven participants aged 8-17 years old were recruited in a tertiary metropolitan pediatric IBD center. Semi-structured interviews using topic guides and optional draw-and-write methods were used for data collection. Multi-level coding and constant comparison methods were utilised during data analysis. Results: The pediatric IBD self-management theory described the phenomenon of self-management through the relationship of categories that emerged from the study. Self-management starts off as a parent-dominant process that progressed to a more autonomous form with increasing disease experience. The experience was described as filled with struggles and a developing sense of control in managing these struggles. Autonomous self-management developed from the interaction of information, insight and integration. Enablers and deterrents were the contextual factors that influenced the development of self-management. Conclusions: Establishing identity both as a psychosocial developmental task and a disease-specific task is the core of self-management in childhood IBD. Future self-management programs should explore the role of structures around the child (family, school and healthcare systems) and the implementation of a proactive philosophy of involving children in managing their condition

Identification of research priorities for Inflammatory Bowel Disease nursing in Europe: a Nurses-European Crohn’s & Colitis Organisation Delphi survey

Background: Robust research evidence should inform clinical practice of inflammatory bowel disease (IBD) specialist nurses, but such research is currently very limited. With no current agreement on research priorities for IBD nursing, this survey aimed to establish topics to guide future IBD nursing research across Europe. Method: An online modified Delphi survey with nurse and allied health professional members of the Nurses European Crohn’s and Colitis Organisation (n=303) was conducted. In round one, participants proposed topics for research. In round two, research topics were rated on a 1-9 scale and subsequently synthesised to create composite research questions. In round, three participants selected their top five research questions, rating these on a 1-5 scale. Results: Eighty-eight, 90, and 58 non-medical professionals, predominantly nurses, responded to rounds one, two and three respectively, representing 13 European countries. In round one, 173 potential research topics were suggested. In rounds two and three, responders voted for and prioritised 125 and 44 questions respectively. Round three votes were weighted (rank of 1 = score of 5), reflecting rank order. The top five research priorities were: interventions to improve self-management of IBD; interventions for symptoms of frequency, urgency and incontinence; the role of the IBD nurse in improving patient outcomes and quality of life; interventions to improve IBD fatigue; and care pathways to optimise clinical outcomes and patient satisfaction. Conclusion: The prioritised list of topics gives clear direction for future IBD nursing research. Conducting this research has potential to improve clinical practice and patient-reported outcomes

When family don’t acknowledge: a hermeneutic study of the experience of kinship stigma in community-dwelling people with inflammatory bowel disease

Recent evidence suggests that kinship stigma - the experience of being or feeling stigmatised by family members - arises in the stories of people with inflammatory bowel disease (IBD). Adopting Goffman’s definition of stigma as “an attribute which is deeply discrediting,” we used hermeneutic (interpretive) phenomenology to further explore the meaning of kinship stigma for people with IBD and reveal its significance. Eighteen unstructured interviews took place in participants’ own homes in the United Kingdom, between July 2015 and April 2016. Transcripts were analysed using a hermeneutic method to reveal three relational themes and one constitutive pattern. Referring to relevant literature, the presence and impact of kinship stigma on people with IBD is revealed. Kinship stigma - experienced as and meaning a lack of acknowledgement - may have wide-ranging implications for health and social care professionals caring for persons with IBD or other chronic illness and their families

PWE-055 Stigma in inflammatory bowel disease: building resilience

qualitative study aimed to: a) understand the experience of stigma in people with IBD and whether stigma derives from the bowel disorder diagnosis or from related FI; b) understand how stigma affects social, personal and emotional wellbeing, and how people with IBD manage these issues. Using purposive stratified sampling, 40 members of a UK IBD charity were recruited. Participants self-identified as having FI or not, and feeling stigmatised or not

Inflammatory bowel disease advice lines during the COVID-19 pandemic: a retrospective service evaluation

Background: The COVID-19 pandemic significantly impacted on healthcare delivery worldwide, affecting many services, including those for inflammatory bowel disease (IBD). Aims: To evaluate the impact of COVID-19 on worldwide IBD telephone advice-line services. Methods: A mixed-methods 25-item online survey was distributed to IBD specialist nurses globally using IBD professional networks, email and social media. Data were analysed using descriptive statistics (quantitative data) and content and thematic analysis (qualitative data). Findings: Across 21 countries, 182 IBD specialists participated. With adjustments, all advice lines remained functional. Call content changed, and call volume increased exponentially. Strategies were recommended to maintain services. IBD specialist nurses faced considerable challenges, including overwhelming workload, disrupted referral pathways, fragmented IBD clinical team support, isolation and greatly lowered morale. Conclusions: To cope with similar future crises, advice-line training, resilience coaching and ringfencing of the IBD clinical team are essential. Development of global guidelines for maintaining advice-line functionality in any scenario is recommended

Experiences of ethnic minority patients who are living with a primary chronic bowel condition: a systematic scoping review with narrative synthesis

Background: Prevalence of chronic gastrointestinal diseases has been rising amongst ethnic minority populations in Western countries, despite the first-generation migrants originating from countries of low prevalence. Differences caused by genetic, environmental, cultural, and religious factors in each context may contribute towards shaping experiences of ethnic minority individuals living with primary bowel conditions. This review aimed to explore the experiences of ethnic minority patients living with chronic bowel conditions. Methods: We conducted a systematic scoping review to retrieve qualitative, quantitative, and mixed methods studies from eight electronic databases, and manually searched reference lists of frequently cited papers. Results: Fourteen papers met the inclusion criteria: focussing on inflammatory bowel disease, irritable bowel syndrome, and coeliac disease. Core themes were narratively analysed. South Asians had limited understanding of inflammatory bowel disease and coeliac disease, hindered by language and literacy barriers, particularly for older generations, suggesting that culturally relevant information is needed. Family support was limited, and Muslim South Asians referred to religion to understand and self-manage inflammatory bowel disease. Ethnic minority groups across countries experienced: poor dietary intake for coeliac disease and inflammatory bowel disease, cultural conflict in self-managing diet for inflammatory bowel disease which increased anxiety, and there was a need for better quality of, and access to, healthcare services. British ethnic minority groups experienced difficulties with IBD diagnosis/ misdiagnosis. Conclusions: Cultural, religious, and social contexts, together with language barriers and limited health literacy influenced experiences of health inequalities for ethnic minority patients living with chronic bowel diseases

The CATH domain structure database: new protocols and classification levels give a more comprehensive resource for exploring evolution

We report the latest release (version 3.0) of the CATH protein domain database (). There has been a 20% increase in the number of structural domains classified in CATH, up to 86 151 domains. Release 3.0 comprises 1110 fold groups and 2147 homologous superfamilies. To cope with the increases in diverse structural homologues being determined by the structural genomics initiatives, more sensitive methods have been developed for identifying boundaries in multi-domain proteins and for recognising homologues. The CATH classification update is now being driven by an integrated pipeline that links these automated procedures with validation steps, that have been made easier by the provision of information rich web pages summarising comparison scores and relevant links to external sites for each domain being classified. An analysis of the population of domains in the CATH hierarchy and several domain characteristics are presented for version 3.0. We also report an update of the CATH Dictionary of homologous structures (CATH-DHS) which now contains multiple structural alignments, consensus information and functional annotations for 1459 well populated superfamilies in CATH. CATH is directly linked to the Gene3D database which is a projection of CATH structural data onto ∼2 million sequences in completed genomes and UniProt