N07 A qualitative study of the impact of inflammatory bowel disease on partners

Abstract Background Inflammatory Bowel Disease (IBD) not only impacts the quality of life of the patient, but also affects their family members. Studies to date have provided an understanding of impact of IBD and IBD implications for people with IBD. However, little is known about the impact of IBD on their family members. Therefore, the current study aimed to explore the lived experience of people with IBD and their family members regarding the impacts of IBD on family members and their coping methods. Methods Twelve participants, including six people with IBD with their six partners, were purposively selected, no other family members (parents / children, sibling) came forward to participate in the study. The in-depth, semi-structured online interviews were conducted via Skype, Zoom, or Microsoft Teams between February-June 2020. Interviews were audio-recorded, transcribed verbatim, and analysed using inductive thematic analysis by Braun and Clarke. Results Four main themes emerged during the analysis under the central theme “our relationship with IBD, for better or worse”. IBD affected the partners in terms of their own relationship, relationship with others, everyday life, and emotional and mental well-being. The theme “our relationship” showed the impact of IBD on the relationship between a couple, including the intimate relationship, family planning, role change as partner and carer, and the importance of honest communication. IBD also affected wider relationships with family, children, and social life, but teamwork could mediate negative impact in relationships. Emotional well-being was impacted by living in constant fear and guilt. Humour and knowledge of IBD reduced negative impacts. IBD impacts on everyday life (diet, finances, and travel) for both patients and partners. Planning for uncertain situations was helpful to reduce restrictions. Conclusion The study provides an understanding of IBD impact on partners and the coping strategies from patients and partners’ perspectives. There are wide-ranging implications for health and social care professionals caring for people with IBD and their families. Social support has been recognised as a vital buffering mechanism in facilitating an individual’s adjustment to IBD. Healthcare professionals and researchers may integrate a bio-psycho-social approach into their work with IBD family members. There is a need to develop interventions to help family members of IBD patients to better cope with the illness and to have a more fulfilling life.

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Inflammatory bowel disease negatively impacts household and family life

Frontline Gastroenterology ◽

10.1136/flgastro-2021-102027 ◽

2021 ◽

pp. flgastro-2021-102027

Author(s):

Emma Paulides ◽

Demi Cornelissen ◽

Annemarie C de Vries ◽

C Janneke van der Woude

Keyword(s):

Inflammatory Bowel Disease ◽

Family Life ◽

Bowel Disease ◽

Negative Impact ◽

Activity Impairment ◽

Holistic Treatment ◽

Domestic Activities ◽

Desire To Have Children ◽

Inflammatory Bowel ◽

The Impact

BackgroundInflammatory bowel disease (IBD) has a major impact on different aspects of life of patients with IBD, but functioning in the home environment is under-reported in literature. The aim of this study was to assess the impact of IBD on household and/or family life.MethodAdult patients with IBD from the outpatient clinic of the Erasmus MC (Rotterdam, the Netherlands) were invited to participate in this cross-sectional study between September and December 2020. A questionnaire was composed to measure the impact of IBD on functioning in the household and family life. In addition, the IBD Disability Index and Work Productivity and Activity Impairment Questionnaire were used. Data were analysed using descriptive statistics and multiple logistic regression modelling.ResultsOf 308 invited patients, 229 patients were included (response rate 74%). Sixty-eight per cent of patients were diagnosed with Crohn’s disease, 69% were female and median age was 38.0 years. Many patients reported difficulties with domestic activities (55.0%), leisure (53.9%), parenting (50.6%), sexual activities (48.4%) and interpersonal relationships (39.1%). Fatigue was associated with the experience of more severe difficulties in domestic activities (OR 16.160, 95% CI 6.053 to 43.141). Furthermore, 32.7% of patients felt that IBD influenced their desire to have children.ConclusionIBD has a markedly negative impact on household and/or family life in many patients. To optimise patient care, household and family related difficulties need to be considered in a holistic treatment approach.

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N19 Understanding the emotional impact of inflammatory bowel disease: looking after nurses looking after patients

Journal of Crohn s and Colitis ◽

10.1093/ecco-jcc/jjz203.1002 ◽

2020 ◽

Vol 14 (Supplement_1) ◽

pp. S666-S666

Author(s):

L Younge ◽

L Medcalf ◽

A Hall ◽

C Shaw

Keyword(s):

Inflammatory Bowel Disease ◽

Bowel Disease ◽

Psychological Impact ◽

Well Being ◽

Emotional Impact ◽

Learning Needs ◽

Emotional States ◽

Inflammatory Bowel ◽

The Uk ◽

The Impact

Abstract Background The emotional impact of inflammatory bowel disease (IBD) is well documented. Patients describe distress, anxiety, depression and relationship difficulties, (including with healthcare staff). Nurses working with IBD patients report being emotionally affected, with fears of ‘burnout’, feeling unable to respond helpfully to patients and feelings of guilt, frustration, sadness and anger. Understanding and managing the emotional impact of the work for IBD nurses is an area underrepresented in either research or nursing literature. Methods A collaborative project with IBD nurses and nursing and psychotherapy colleagues from the Tavistock and Portman NHS Foundation Trust developed a one-day event for IBD nurses in the UK. Attendees were self-selecting and the event was supported by Pharma. The conference had three aims: To provide an opportunity to recognise and understand the emotional impact on nurses working with IBD patients, to provide a networking opportunity, and to use information gathered before, during and after the conference to develop a clearer understanding of nurses’ experiences and needs. A pre-conference questionnaire was sent to attendees, observations were made during the conference (noting themes and dilemmas) and an evaluation form was provided. Results 89% agreed/strongly agreed the event provided understanding of how IBD can have an emotional and psychological impact on patients. 89% agreed/strongly agreed the event provided understanding of the emotional impact on nurses working with IBD patients. Eighty-nine per cent agreed/strongly agreed the event provided understanding of ways in which the emotional impact can influence provision of care and decision making in patients with IBD. Ninety-three per cent agreed/strongly agreed the event provided them with ideas for establishing and managing reflective learning opportunities. Seventy-five per cent agreed/strongly agreed the event enabled them to identify different ways of responding to patients they work with. Conclusion Feedback from attendees identified a need and an expressed wish by IBD nurses to understand and explore how they are affected by their work, in relation to maintaining therapeutic and safe relationships with patients and maintaining their own well-being and job satisfaction. Learning needs relating to training in supervision, developing skills in responding to patients’ emotional states, tools for looking after one’s self and opportunities for group discussions and learning were identified. There is an opportunity to develop further learning and training events in relation to these identified needs. Further exploration of accessibility, funding and evaluation would be beneficial in identifying the impact, if any, of further training.

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Fr103 STRATIFYING THE IMPACT OF COVID-19 PANDEMIC ON THE EMOTIONAL AND PHYSICAL WELL-BEING OF PATIENTS WITH INFLAMMATORY BOWEL DISEASE.

Gastroenterology ◽

10.1016/s0016-5085(21)01266-x ◽

2021 ◽

Vol 160 (6) ◽

pp. S-219-S-220

Author(s):

Mohammed El-Dallal ◽

Ariana Saroufim ◽

Hannah Systrom ◽

Sarah Ballou ◽

Adam S. Cheifetz ◽

...

Keyword(s):

Inflammatory Bowel Disease ◽

Bowel Disease ◽

Well Being ◽

Inflammatory Bowel ◽

The Impact

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The sense of coherence, social support and quality of life among patients with inflammatory bowel disease*

Pomeranian Journal of Life Sciences ◽

10.21164/pomjlifesci.635 ◽

2019 ◽

Vol 65 (4) ◽

Author(s):

Jakub Bieńkowski ◽

Agata Rudnik ◽

Mariola Bidzan

Keyword(s):

Quality Of Life ◽

Social Support ◽

Inflammatory Bowel Disease ◽

Everyday Life ◽

Sense Of Coherence ◽

Bowel Disease ◽

Psychological Resources ◽

Inflammatory Bowel ◽

The Impact

Introduction: Inflammatory bowel disease (IBD) is a group of chronic digestive system conditions which significantly influence the everyday life of patients. Exhausting intestinal discomfort might cause a strong feeling of distress and lowers the quality of life. This study was based on the question: how are the sense of coherence, social support, socio-demographic variables and the duration of disease related to the quality of life of individuals suffering from IBD?Materials and methods: Thirty-nine individuals suffering from IBD were examined: 21 with ulcerative colitis, 17 with Crohn’s disease and 1 with microscopic colitis. The participants completed a socio-demographic survey, and Life Orientation Questionnaire (SOC-29) and Berlin Social Support Scales (BSSS) questionnaires. The quality of life was examined by the Functional Assessment of Cancer Therapy-Gastric (FACT-Ga) questionnaire.Results: The overall rate of the sense of coherence with its components and the available instrumental and emotional support was found to be significantly connected to the patients’ quality of life. The level of education differentiated the examined patients in terms of the quality of life.Conclusions: Psychological resources can play a significant role in the assessment of the impact of chronic disease on patients’ everyday life. It is important to focus on their importance in raising the quality of life of the patients.

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N27 What people want! Exploring inflammatory bowel disease patients’ perspectives on healthcare professionals addressing sexual well-being

Journal of Crohn s and Colitis ◽

10.1093/ecco-jcc/jjz203.1010 ◽

2020 ◽

Vol 14 (Supplement_1) ◽

pp. S669-S670

Author(s):

S Fourie ◽

W Czuber-Dochan ◽

C Norton

Keyword(s):

Inflammatory Bowel Disease ◽

Bowel Disease ◽

Healthcare Professionals ◽

Clinical Care ◽

Holistic Approach ◽

Well Being ◽

Structured Interviews ◽

Time Space ◽

Inflammatory Bowel ◽

The Impact

Abstract Background Inflammatory bowel disease (IBD) affects every aspect of one’s life, yet no routine assessment for the impact on sexuality is made. Our aim was to explore patients’ perspective on healthcare professionals (HCPs) addressing sexuality/sexual well-being concerns. Methods This was a qualitative narrative study. Inclusion criteria were any sexual orientation and with known IBD for longer than 18 months. Data were collected via semi structured interviews and anonymous narrative accounts submitted via Google Forms. Thematic analysis was used to analyse the data. Results Fourteen adults, 4 male and 10 female, took part. Eleven participants were from the UK, one from the USA of America and one for South Africa. The following main themes and subthemes were identified: I cannot imagine talking about my sex life (a difficult topic; there is not enough time), Those who talked about sex, talked badly (nobody volunteered information; badly handled conversations), Still living whilst unwell (sex is an important part of my life; sex issues break down relationships, medicalised body), IBD ruined my sex life (feeling unattractive; feelings of shame and embarrassment), I feel unheard (HCPs don’t open the discussion; sex not taken seriously), I’m a person, not my IBD (holistic approach to care; time, space and ways to talk about sex). The findings reflect the importance of sexual well-being to those living with IBD, the experiences of such conversations, barriers to conversations with HCPs on sexual well-being, and suggestions on how HCPs should address their unmet needs. The importance of discussing intimacy and sexuality was emphasised, as participants felt their sexual well-being was considerably affected by IBD. The majority reported that HCPs did not initiate discussions on sexual well-being, nor did they understand the impact of IBD on sexual well-being, with a distinct accent on the perceived lack of a holistic approach to their care. Therefore, participants made suggestions for practice, such as provision of information related to sexual well-being in the form of leaflets, additionally to HCPs raising the issue. Conclusion Our findings indicate that communicating on sexuality/sexual well-being is a problematic area of IBD care. HCPs must be cognisant of the sexual well-being concerns and needs of those living with IBD, who want this topic discussed routinely, as part of a holistic approach to their clinical care.

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Short Inflammatory Bowel Disease Questionnaire: translation and validation to the Portuguese language

Health and Quality of Life Outcomes ◽

10.1186/s12955-021-01698-9 ◽

2021 ◽

Vol 19 (1) ◽

Author(s):

Joana Roseira ◽

Helena T. Sousa ◽

Ana Marreiros ◽

Luís F. Contente ◽

Fernando Magro

Keyword(s):

Inflammatory Bowel Disease ◽

Internal Consistency ◽

Bowel Disease ◽

Well Being ◽

Score Distribution ◽

Inflammatory Bowel Disease Questionnaire ◽

Portuguese Version ◽

Inflammatory Bowel ◽

The Impact ◽

Disease Questionnaire

Abstract Background The Short Inflammatory Bowel Disease Questionnaire (SIBDQ) is a widely used instrument to assess Health-related Quality of Life (HRQoL) among inflammatory bowel disease (IBD) patients. Our aim was to translate and adapt the SIBDQ so that it could be adequately used in Portugal. Methods This is a prospective design cohort study undertaken at a tertiary hospital. This study took place simultaneously with the first part of the SexIDI study, a study aiming to assess the impact of IBD on patients’ sexual QoL. The original SIBDQ was translated by two independent translators and adapted by an IBD expert panel following the opinions of a convenient sample of 5 IBD patients. Afterwards, IBD patients from the outpatient clinic were consecutively invited to fill the Portuguese version of the questionnaire (SIBDQ-PT) at three different timepoints (0, 2, 4 weeks). Ninety-two patients completed the SIBDQ-PT at baseline, whereas 33 did so after 2 and 4 weeks (approximately). Statistical analysis was performed using SPSS version 25, and the following aspects were analysed: reliability (through internal consistency, test–retest and intraclass correlation), validity (through exploratory factor analysis [EFA], and Pearson correlation coefficient for linear correlations), score distribution, and responsiveness analysis (through t-student tests). Results Overall, SIBDQ-PT was shown to have a high internal consistency (Cronbach's α = 0.80) and a high test–retest reliability (0.80 [CI 0.74–0.86] and 0.69 [CI 0.50–0.82]). EFA detected four dimensions—bowel, social, emotional and systemic. As expected, an overall SIBDQ-PT score was positively correlated with sexual satisfaction (r = 0.27; p < 0.05) and negatively correlated with depression (r = − 0.63; p < 0.01). Moreover, SIBDQ-PT was found to have an adequate score distribution, and to be responsive, as there was a significant subscore change for patients who reported an “overall worsening in general well-being” (0.93 ± 0.13 decrease; p < 0.01). Conclusions The Portuguese version of the SIBDQ hereby presented is a reliable, valid and responsive instrument that can be used to measure HRQoL among Portuguese IBD patients.

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P105 Coping in Inflammatory Bowel Disease: insights from the Crohn’s and Colitis UK national survey

Journal of Crohn s and Colitis ◽

10.1093/ecco-jcc/jjab076.233 ◽

2021 ◽

Vol 15 (Supplement_1) ◽

pp. S199-S200

Author(s):

J Marshall Mr ◽

G Rowse ◽

S Hollobone ◽

S Afhim ◽

P Oliver

Keyword(s):

Inflammatory Bowel Disease ◽

Disease Activity ◽

National Survey ◽

Bowel Disease ◽

Personal Control ◽

Well Being ◽

Small Sample ◽

Factors Associated ◽

Inflammatory Bowel ◽

The Impact

Abstract Background Inflammatory bowel disease (IBD) is a chronic condition that adversely affects quality of life (QoL) and well-being. Factors associated with coping in IBD include disease activity, the presence of arthropathy and illness perceptions such as personal control. The evidence in this field is, however, limited by small sample sizes. The aim of this study was to use data from a national survey to identify factors associated with coping in a large sample of IBD patients. Identification of factors associated with coping may help inform the development of targeted interventions to improve psychological well-being. Methods A national postal and online survey was conducted by the charity Crohn’s & Colitis UK of its members in 2018. Participants were asked to complete a questionnaire which was co-produced by the charity and University of Sheffield, following focus groups of key stakeholders. The survey collected demographic and disease-related information as well as Likert item responses to questions relating to well-being, including coping. The response rate was 22.2%. To examine factors associated with coping, ordinal regression analysis was performed. Results are presented as adjusted odds ratios (ORs). Results 8012 respondents were included in the analyses. The mean age of respondents was 45 years (SD =16 years) with 69% being female. The majority of respondents had a diagnosis of Crohn’s disease (78%) with 53% of participants self-reporting that they were in remission at the time of the survey. In multivariable analyses, the adjusted odds of females reporting difficulty in coping was 1.6 times higher than that for males (95% CI 1.43–1.79). The odds of those with active disease reporting more difficulty in coping were approximately twice that of those in remission (95% CI 2.38–2.93). Several well-being factors were found to be associated with coping, even after adjusting for personal and disease related characteristics (such as severity of symptoms and disease activity). Participants who had reported less understanding and felt they had less control of their IBD, had higher odds of difficulty in coping with their disease (95% CI 0.76–0.85 & 0.64–0.72 respectively). Participants who experienced disease-related stigma were also more likely to have difficulty in coping (95% CI for 1.99–2.26). Conclusion In this large survey of IBD patients, coping was associated with gender, disease characteristics and a number of psychological factors, which may be amenable to intervention to improve the QoL and well-being of patients with IBD. Efforts are required to improve public awareness of the impact of IBD in order to reduce stigma. Further research is required to understand these relationships and constructs through the use of validated measures.

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Stigma and Disclosure in Patients With Inflammatory Bowel Disease

Inflammatory Bowel Diseases ◽

10.1093/ibd/izz260 ◽

2019 ◽

Vol 26 (7) ◽

pp. 1010-1016

Author(s):

Ling Guo ◽

Jacob Rohde ◽

Francis A Farraye

Keyword(s):

Inflammatory Bowel Disease ◽

Bowel Disease ◽

Disease Burden ◽

Well Being ◽

Public Perceptions ◽

Research Areas ◽

Medical Issues ◽

Inflammatory Bowel ◽

The Impact

Abstract Stigma in patients suffering from chronic disease is associated with worse clinical outcomes and secondary medical issues such as depression, anxiety, and decreased quality of life. We believe various forms of stigma can have different clinical significance in patients with inflammatory bowel disease (IBD). With further insight and research, we suggest that these forms of stigma could be identified and targeted by researchers or clinicians to lessen the psychological disease burden in patients and to potentially improve their physical well-being. In the current review, we discuss public perceptions, knowledge, and stigmatization of IBD, the prevalence of various forms of IBD stigma, and the impact of such stigma on patient outcomes. We also discuss IBD disclosure, its association with stigma, and the tendencies and effects of such disclosures among youth and adult patient populations. We finish the review by highlighting possible modalities and research areas for future IBD interventions.

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The Emotional Toll of Inflammatory Bowel Disease: Using Machine Learning to Analyze Online Community Forum Discourse

Crohn's & Colitis 360 ◽

10.1093/crocol/otz011 ◽

2019 ◽

Vol 1 (2) ◽

Cited By ~ 1

Author(s):

Robert Lerrigo ◽

Johnny T R Coffey ◽

Joshua L Kravitz ◽

Priyanka Jadhav ◽

Azadeh Nikfarjam ◽

...

Keyword(s):

Machine Learning ◽

Inflammatory Bowel Disease ◽

Bowel Disease ◽

Online Community ◽

Learning Algorithm ◽

Well Being ◽

Psychosocial Impacts ◽

Community Forum ◽

Inflammatory Bowel ◽

The Impact

Abstract Background Patients with inflammatory bowel disease are using online community forums (OCFs) to seek emotional support. The impact of OCFs on well-being and their emotional content are unknown. Methods We used an unsupervised machine learning algorithm to identify the thematic content of 51,591 public, online posts from the Crohn’s & Colitis Foundation Community Forum. Results We identified 10,702 (20.8%) posts expressing: gratitude (40%), anxiety/fear (20.8%), empathy (18.2%), anger/frustration (13.4%), hope (13.2%), happiness (10.0%), sadness/depression (5.8%), shame/guilt (2.5%), and/or loneliness (2.5%). A common subtheme was the importance of fostering social support. Conclusions High-throughput, machine learning-directed analysis of OCFs may help identify psychosocial impacts of inflammatory bowel disease on patients and their caregivers.

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P213 Having Inflammatory Bowel Disease Negatively Impacts Household and Family Life

Journal of Crohn s and Colitis ◽

10.1093/ecco-jcc/jjab076.339 ◽

2021 ◽

Vol 15 (Supplement_1) ◽

pp. S271-S271

Author(s):

E Paulides ◽

D Cornelissen ◽

C J van der Woude

Keyword(s):

Inflammatory Bowel Disease ◽

Family Planning ◽

Family Life ◽

Bowel Disease ◽

Negative Impact ◽

Medical Center ◽

Holistic Treatment ◽

Desire To Have Children ◽

Inflammatory Bowel ◽

The Impact

Abstract Background Inflammatory bowel disease (IBD) can have a major impact on different aspects of life. This study aimed to provide insight into the impact of IBD on household and/or family life, and to determine whether this differed between sex. Methods Between September and December 2020, adult IBD patients from the outpatient clinic of the Erasmus Medical Center (Rotterdam, the Netherlands) were invited to fill out a survey. A questionnaire was developed to measure the impact of IBD on functioning in the household and on family planning. Generic disability and work disability were measured with the IBD Disability Index (IBD-DI) and the Work Productivity and Activity Impairment Questionnaire (WPAI-IBD). Data were analysed using descriptive statistics and tests for independent groups. Results Of the 229 patients who participated (response rate 74%), 68% had Crohn’s disease, 69% was female and the median age was 38.0 years. Many patients experienced difficulties with domestic activities (55.0%), leisure (53.9%), parenting (50.6%), sexual activities (48.4%) and interpersonal relationships (39.1%) because of IBD in the past week. Furthermore, 32.7% of patients felt that IBD interfered with their desire to have children. Female sex was associated with more severe limitations in various aspects of household life, more interference in family planning and higher generic disability scores. Conclusion IBD had a markedly negative impact on household and/or family life in many patients. In order to optimize patient care, physicians need to be aware of household and family related difficulties and strive for a holistic treatment approach.

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