scholarly journals Are there also negative effects of social support? A qualitative study of patients with inflammatory bowel disease

BMJ Open ◽  
2019 ◽  
Vol 9 (1) ◽  
pp. e022642 ◽  
Author(s):  
Alexander Palant ◽  
Wolfgang Himmel
Keyword(s):  
Social Support ◽  
Inflammatory Bowel Disease ◽  
Support Groups ◽  
Bowel Disease ◽  
Secondary Analysis ◽  
Online Communication ◽  
Social Contact ◽  
Negative Effects ◽  
Negative Experience ◽  
Inflammatory Bowel

ObjectiveSocial support is considered an important resource in coping with chronic conditions. By conducting a series of interviews with people who suffer from inflammatory bowel disease (IBD), we received the impression that social support in face-to-face or online communication could also be a source of stress and strain. The aim of our study was to better understand and describe possible negative effects of social support.DesignThis is a secondary analysis of narrative interviews. The interviewees were selected using a maximum-variation sampling approach. Grounded theory and the ‘OSOP’ (one sheet of paper) method were applied to categorise those parts of the interviews that touched on the negative effects of social support.SettingThe open-end interview collection took place throughout Germany from September 2011 to June 2012. Most of the participants were interviewed in their homes, some in the Department of General Practice in Göttingen.Participants42 patients with IBD.ResultsTwo interrelated categories emerged: (1) unwanted confrontation and (2) undesirable reactions. The interviewees perceived social support as negative, especially if they felt overwhelmed and/or if they had not asked for it. Consequently, some of our interview partners developed strategies to prevent coming into social contact with others or stopped talking entirely about their disease.ConclusionWhile social support is usually conceptualised and perceived as a positive resource in chronic disease, it sometimes turns into a negative experience and may end in social isolation and deteriorate health. This process also happens in online support groups and increases anxiety when exchanging with other people on the internet. Before motivating ill people to seek contact with others, they should know about the negative effects of social support.

scholarly journals Clinical Course and Dietary Patterns Among Patients Incorporating the Autoimmune Protocol for Management of Inflammatory Bowel Disease (P12-010-19)

2019 ◽  
Vol 3 (Supplement_1) ◽  
Author(s):  
Joy Lee ◽  
Christian Pedretti ◽  
Gauree Konijeti
Keyword(s):  
Inflammatory Bowel Disease ◽  
Support Groups ◽  
Dietary Patterns ◽  
Bowel Disease ◽  
Online Survey ◽  
Clinical Course ◽  
Immunosuppressive Agents ◽  
Food Group ◽  
Dietary Interventions ◽  
Inflammatory Bowel

Abstract Objectives The aim was to examine the clinical course and dietary patterns among patients incorporating autoimmune protocol (AIP) for management of inflammatory bowel disease (IBD). Methods An anonymous online survey was sent through electronic newsletters and support groups utilizing AIP. The survey assessed demographics, IBD disease activity, and medication use. Participants were asked about AIP utilization and food group reintroductions. Abdominal pain (AP), stool frequency (SF), and rectal bleeding (RB) were compared at baseline (BL, prior to starting AIP), week 6 (after starting AIP), and present, for both Crohn's disease (CD) and ulcerative colitis (UC). Results There were 78 respondents. Mean age was 39.4 years, with mean IBD duration 13.2 years. 78% had prior steroid exposure. 35% currently on immunosuppressive agents. 73% perceived achieving clinical remission due to AIP. This was more common among patients not on immunosuppression (76% vs. 24% on immunosuppression, P < 0.001). After starting AIP, 32% reported discontinuing steroids. AIP was initiated according to protocol by 73%, while 27% modified it. Food group reintroductions were started within 0–4 weeks of starting AIP among 8%, while 23% reintroduced within 5–8 weeks, 24% within 2–6 months, 23% within 6–12 months, and 13% after 12 months. Success of food group reintroductions varied (Table 1). Among patients with CD, improvement by ≥1 levels of symptoms by week 6 was reported by 77% for AP, 57% for SF, and 57% for RB. Compared to BL, reported symptoms improved by ≥1 levels in 70% for AP, 53% for SF, and 57% for RB. In contrast, disease worsening by ≥1 levels at week 6 was reported by 7% for AP and none for SF and RB. Among patients with UC, improvement by ≥1 levels by week 6 was reported by 72% for AP, 79% for SF, and 65% for RB. Compared to BL, reported symptoms improved by ≥1 levels in 65% for AP, 67% for SF, and 58% for RB. In contrast, disease worsening by ≥1 levels at week 6 was reported by 2% for AP, 2% for SF, and 5% for RB. Conclusions Patients utilizing AIP for management of IBD report clinical benefit of AIP, reduction of steroid use, and successful food group reintroduction. Dietary interventions could be another form of treatment in patients with IBD to improve symptoms and maintain remission. Funding Sources Not applicable. Supporting Tables, Images and/or Graphs

Leading patient and professional education: challenges for a specialist nurse in paediatric inflammatory bowel disease

2020 ◽  
Vol 18 (4) ◽  
pp. 32-36
Author(s):  
Elena Gil-Zaragozano
Keyword(s):  
Inflammatory Bowel Disease ◽  
Support Groups ◽  
Professional Education ◽  
Bowel Disease ◽  
Interprofessional Collaboration ◽  
Online Resources ◽  
Clear Understanding ◽  
Leading Role ◽  
Education Of Patients ◽  
Inflammatory Bowel

Inflammatory bowel disease (IBD) clinical nurse specialists (CNS) play a leading role in the education of patients and other health professionals in primary and secondary care, where interprofessional collaboration (IPC) is essential. Ensuring that this education is up-to-date and delivered equitably is a difficult task with limited resources. This retrospective report describes the activities and procedures developed by a paediatric IBD CNS in South West England to lead education, incorporating IPC and transformational leadership skills. Shared understanding, education and the overall effectiveness of the service was enhanced with various communication activities with other professionals, patients and their carers. Online resources from charities, if vetted and updated, were an effective source of unified information. The limitations of online resources and individual preferences had to be addressed. Family away-days and patient support groups were used to educate patients and carers, as well as to engage them with the department and other peers. Educating staff was pursued through sharing written resources (including policies and guidelines) and enhanced by mentoring and facilitating discussion at local, regional and international levels. Effective collaboration across teams and with other stakeholders is imperative for providing the necessary standard of education for IBD patients and the professionals involved in their care. The CNS should use transformational skills to promote IPC and should have a clear understanding of the context in which they are implementing an educational plan. Nursing resources and innovative actions and procedures that embrace new emerging technologies are needed for the CNS to create efficient and individualised educational strategies.

scholarly journals Effect of Social Support on Psychological Distress and Disease Activity in Inflammatory Bowel Disease Patients

2018 ◽  
Vol 24 (7) ◽  
pp. 1389-1400 ◽  
Author(s):  
Vered Slonim-Nevo ◽  
Orly Sarid ◽  
Michael Friger ◽  
Doron Schwartz ◽  
Ruslan Sergienko ◽  
...  
Keyword(s):  
Social Support ◽  
Inflammatory Bowel Disease ◽  
Psychological Distress ◽  
Disease Activity ◽  
Bowel Disease ◽  
Inflammatory Bowel

Coping behavior and social support contribute independently to quality of life after surgery for inflammatory bowel disease

2000 ◽  
Vol 43 (4) ◽  
pp. 517-521 ◽  
Author(s):  
David N. Moskovitz ◽  
Robert G. Maunder ◽  
Zane Cohen ◽  
Robin S. McLeod ◽  
Helen MacRae
Keyword(s):  
Quality Of Life ◽  
Social Support ◽  
Inflammatory Bowel Disease ◽  
Bowel Disease ◽  
Coping Behavior ◽  
Inflammatory Bowel

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

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.

scholarly journals P236 Low Social support and distinct anxiety as a crucial feature in depressive IBD patients

2021 ◽  
Vol 15 (Supplement_1) ◽  
pp. S283-S283
Author(s):  
J Klaus ◽  
M Kretschmer ◽  
L Schulte ◽  
T Kaltenbach ◽  
L Rauschek ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Social Support ◽  
Inflammatory Bowel Disease ◽  
Bowel Disease ◽  
Depression Scale ◽  
Depression Score ◽  
The State ◽  
State Of Mind ◽  
Inflammatory Bowel

Abstract Background Depression is a common comorbidity of Inflammatory Bowel Disease (IBD) which leads to deterioration of the state of disease. The physician needs to know which psychiatric and temperamental characteristics have to be met in order to adapt his treatment to depressive patients. Therefore we compared patients with elevated depressive scores to those with normal scores. Methods 291 IBD patients in 3 specialized IBD clinics in Germany (Ulm, Blaubeuren, Biberach) answered an anonymous questionnaire on their disease itself, on socio-demographic parameters and 6 psychological tests (HADS, STAI-S, STAI-T, FSozU, Neo-FFI, BL-R). Results The questionnaire was completed by 139 (47,3%) male and 155 (52,7%) female patients, 185 (63,4%) with Crohn’s disease and 107 (36,6%) with ulcerative colitis. 229 patients (79,0%) had a normal depression score (=NormD) (HADS-D), 59 (21,0%) had a borderline to very severe elevated score (elevated depression score = ElevD). We characterized ElevD patients with the aid of a personality test (Neo-FFI) as more neurotic (p&lt;0.001), but less extroverted (p&lt;0.001), open for experience (p=0.042), agreeable (p=0.004) and conscientious (p=0.001) than patients with NormD. The Hospital Anxiety and Depression Scale (HADS-D) revealed them as more anxious (p&lt;0.001). This was confirmed by the State Trait Anxiety Inventory (STAI-S/-T) which showed ElevD patients to be more anxious as a state (p&lt;0.001) and as a trait (p&lt;0.001). Moreover patients with ElevD percieve their social support as little as seen in the FSozU (p&lt;0.001). In addition there are lower scores in the Short Inflammatory Bowel Disease Questionnaire (SIBDQ) (p&lt;0.001), the Complaints List (B-LR) (p&lt;0.001) and the fact that most of the patients with ElevD had an active disease (43 (75,4%)) of the group. Conclusion IBD patients with an elevated depression score are more neurotic and less extroverted, open for experience, agreeable and conscientious than other patients. They are anxious and have little social support combined with many complaints and low quality of life. To improve their situation or to prevent it, the treating physician needs to be more sensitive to the patient’s state of mind and inquire more about their general complaints and especially their social support system so he is able to intervene and optimize the quality of life.

Quality-of-Life Measurement in Patients with Inflammatory Bowel Disease Receiving Social Support

2007 ◽  
Vol 13 (4) ◽  
pp. 470-474 ◽  
Author(s):  
S. Oliveira ◽  
C. Zaltman ◽  
C. Elia ◽  
R. Vargens ◽  
A. Leal ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Social Support ◽  
Inflammatory Bowel Disease ◽  
Bowel Disease ◽  
Life Measurement ◽  
Inflammatory Bowel ◽  
Quality Of Life Measurement

Sexual difficulties in patients with inflammatory bowel disease (IBD): results of a 2-year study

2020 ◽  
Vol 18 (6) ◽  
pp. 34-42
Author(s):  
Dean A Tripp ◽  
Madelaine Gierc ◽  
Phylicia Verrault ◽  
Katherine Fretz ◽  
Mark Ropeleski ◽  
...  
Keyword(s):  
Social Support ◽  
Inflammatory Bowel Disease ◽  
Sexual Satisfaction ◽  
Bowel Disease ◽  
Perceived Social Support ◽  
Longitudinal Patterns ◽  
Degree Of Stability ◽  
Inflammatory Bowel ◽  
High Degree ◽  
Over Time

Background: Sexual difficulties are common in individuals with inflammatory bowel disease (IBD). Aims: This study aimed to document sexual difficulties in IBD; to investigate longitudinal patterns in these difficulties; and to identify biopsychosocial factors that may serve as predictors of these difficulties. Methods: A longitudinal study was conducted, with IBD outpatients completing three questionnaires across 2 years. Items assessed biopsychosocial variables (e.g., age, PHQ-9, Multidimensional Scale of Perceived Social Support) and sexual difficulties (Golombok-Rust Inventory of Sexual Satisfaction). Findings: Patients reported a moderate level of sexual difficulties, with 17.5–74.5% exceeding the threshold of clinical significance across domains. No significant changes in sexual difficulties occurred across the study period. Biopsychosocial factors accounted for up to 25.2% of the variance in sexual difficulties, with age, depressive symptoms, pain-related disability, perceived social support, and optimism associated with these difficulties in the hypothesised directions. Conclusions: Patients reported significant sexual difficulties in several domains, with a high degree of stability over time. Biopsychosocial factors were associated with reported sexual difficulties, particularly older age and lower perceived social support. These factors are suggested as targets for intervention research.

scholarly journals Insights into the treatment of inflammatory bowel disease in pregnancy

2019 ◽  
Vol 12 ◽  
pp. 175628481985223 ◽  
Author(s):  
Sarah E. Shannahan ◽  
Jonathan M. Erlich ◽  
Mark A. Peppercorn
Keyword(s):  
Inflammatory Bowel Disease ◽  
Bowel Disease ◽  
Early Adulthood ◽  
Safety Data ◽  
Pharmacologic Therapy ◽  
Negative Effects ◽  
Fetal Outcomes ◽  
Medication Effects ◽  
Inflammatory Bowel ◽  
In Pregnancy

Patients diagnosed with inflammatory bowel disease (IBD) are most commonly diagnosed in late adolescence or early adulthood, with half of patients being diagnosed before age 32, thus impacting peak years of reproduction and family planning. While controlled IBD has no negative effects on the ability to conceive, there is overall a trend towards voluntary childlessness due to patients’ concerns for adverse fetal outcomes from underlying IBD and from adverse medication effects. Active disease at the time of conception is associated with worsening disease activity during pregnancy and carries a higher risk of poor fetal outcomes. It is therefore important to maintain remission during pregnancy, which is often achieved with pharmacologic therapy. The goal of this paper is to provide a comprehensive review of the current literature and safety data for pharmacologic treatment of IBD in pregnancy, in breastfeeding women, and in men planning to have children.

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