Adapting ‘Tame Your Gut’ for patients with inflammatory bowel disease and co-morbid anxiety and/or depression

This qualitative study collected stakeholders’ views on adapting an existing online psychotherapy programme, ‘Tame Your Gut’, to the needs of patients with inflammatory bowel disease (IBD) and comorbid anxiety and/or depression. Adult patients ( n = 13) and health professionals ( n = 12) participated in semi-structured focus groups or interviews, analysed with a thematic analysis. Patients had a generally positive attitude towards ‘Tame Your Gut’, while health professionals saw it as useful for selected patients only. Both groups indicated their preference for clinician-assisted online psychotherapy. ‘Tame Your Gut’ is acceptable to patients and health professionals but only when supported by clinicians.

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Mindfulness-Based Cognitive Therapy Experiences in Youth With Inflammatory Bowel Disease and Depression: Protocol for a Mixed Methods Qualitative Study (Preprint)

10.2196/preprints.14432 ◽

2019 ◽

Author(s):

Tatjana Ewais ◽

Jakob Begun ◽

Maura Kenny ◽

Alan Headey ◽

Steve Kisely

Keyword(s):

Inflammatory Bowel Disease ◽

Young Adults ◽

Mixed Methods ◽

Qualitative Study ◽

Focus Groups ◽

Bowel Disease ◽

Qualitative Data ◽

Adolescents And Young Adults ◽

Inflammatory Bowel

BACKGROUND Mindfulness-based programs are increasingly used as a part of integrated treatment for inflammatory bowel disease (IBD). However, the majority of research has been quantitative with limited qualitative exploration of patients’ experiences of mindfulness programs and no studies among adolescents and young adults with IBD. Furthermore, there has been a paucity of research exploring the role of common psychotherapy and group factors within mindfulness programs. OBJECTIVE This study aims to explore the experiences of adolescents and young adults with IBD and depression who completed a mindfulness-based cognitive therapy (MBCT) group program, as well as the role of therapeutic alliance, group affiliation, and other common psychotherapy and group factors. METHODS This mixed methods qualitative study, nested within a randomized controlled trial (RCT) of MBCT for adolescents and young adults with IBD, will obtain qualitative data from focus groups and open-ended survey questions. The study aims to conduct three to four focus groups with 6-8 participants in each group. It will employ data and investigator triangulation as well as thematic analysis of the qualitative data. RESULTS The study was approved by the Mater Hospital Human Research Ethics Committee and recruitment commenced in May 2019; study completion is anticipated by early 2020. CONCLUSIONS The study will contribute to the assessment of acceptability and feasibility of the MBCT program for adolescents and young adults with IBD. It will also elucidate the role of previously unexplored common psychotherapy and group factors within mindfulness training and help inform the design of a future large-scale RCT of MBCT in this cohort. CLINICALTRIAL Australian New Zealand Clinical Trials Registry (ANZCTR) ACTRN12617000876392; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=373115 INTERNATIONAL REGISTERED REPOR PRR1-10.2196/14432

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Mindfulness-based cognitive therapy experiences in youth with inflammatory bowel disease and depression: findings from a mixed methods qualitative study

BMJ Open ◽

10.1136/bmjopen-2020-041140 ◽

2020 ◽

Vol 10 (11) ◽

pp. e041140

Author(s):

Tatjana Ewais ◽

Jake Begun ◽

Maura Kenny ◽

Alan Headey ◽

Merilyn Tefay ◽

...

Keyword(s):

Inflammatory Bowel Disease ◽

Young Adults ◽

Qualitative Study ◽

Therapeutic Alliance ◽

Focus Groups ◽

Cognitive Therapy ◽

Bowel Disease ◽

Therapeutic Change ◽

Mindfulness Practice ◽

Inflammatory Bowel

ObjectivesMindfulness-based cognitive therapy (MBCT) is effective in treating psychosocial comorbidities in inflammatory bowel disease (IBD); however, there have been no qualitative studies of MBCT experiences among youth with IBD. We aimed to examine the experiences of youth with IBD and depression who completed an adapted MBCT group programme, and the impact of common psychotherapy and group factors.DesignThis mixed method qualitative study, nested within a randomised controlled trial (RCT) of MBCT for youth with IBD, employed thematic analysis of qualitative data from three focus groups and open-ended survey questions.SettingThe study was conducted in the outpatient department of a tertiary hospital for young adults in Brisbane, Australia.ParticipantsOut of sixty-four adolescents and young adults recruited to the RCT of MBCT for youth with IBD and depression, 29 completed the MBCT evaluation survey and 19 attended the focus groups.ResultsFour key themes emerged: ‘connectedness and shared understanding’, ‘growing in wisdom’, ‘therapeutic alliance’ and ‘barriers to mindfulness practice’. Participants described MBCT experiences as healing and transformative with the themes of connectedness, growing in wisdom and therapeutic alliance laying the foundation for therapeutic change. Main barriers included fatigue, depression, time and travel constraints.ConclusionsThe study identified key themes facilitating the process of therapeutic change within the MBCT programme for youth with IBD and elucidated common and group psychotherapy factors underlying the key themes. Participants perceived connecting with peers as essential for learning mindfulness skills which in turn strengthened the connection. Study findings will facilitate interpretation of the results of the RCT of MBCT in youth with IBD and inform the design of future studies of MBCT in this cohort.Trial registration numberACTRN12617000876392; Results.

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Adaptation of TECCU App Based on Patients´ Perceptions for the Telemonitoring of Inflammatory Bowel Disease: A Qualitative Study Using Focus Groups

International Journal of Environmental Research and Public Health ◽

10.3390/ijerph17061871 ◽

2020 ◽

Vol 17 (6) ◽

pp. 1871 ◽

Cited By ~ 1

Author(s):

Javier Del Hoyo ◽

Pilar Nos ◽

Raquel Faubel ◽

Guillermo Bastida ◽

Diana Muñoz ◽

...

Keyword(s):

Inflammatory Bowel Disease ◽

Qualitative Study ◽

Focus Groups ◽

Communication Networks ◽

Bowel Disease ◽

Communication Process ◽

Personalized Feedback ◽

Data Saturation ◽

Inflammatory Bowel

Background: Despite the continuous adaptation of eHealth systems for patients with inflammatory bowel disease (IBD), a significant disconnection persists between users and developers. Since non-adherence remains high, it is necessary to better understand the patients’ perspective on telemonitoring for IBD. Accordingly, this study aimed to adapt the TECCU telemonitoring app to the preferences and needs of IBD patients. Methods: A qualitative study was carried out using successive focus groups of IBD patients. Meetings were audio-recorded and a thematic analysis was employed until data saturation was achieved. The first group included patients who had used the TECCU App in a pilot clinical trial, and subsequent meetings included patients with Crohn’s disease and ulcerative colitis recruited from the Spanish Confederation of patient associations. The information collected at each meeting guided consecutive changes to the platform. Results: Data saturation was reached after three focus groups involving a total of 18 patients. Three main themes emerged: (1) platform usability, (2) the communication process, and (3) platform content. All participants indicated that TECCU is easy to use, permitting continuous and personalized feedback. According to patients´ perspectives, the platform was adapted to foster a flexible follow-up and shared decision-making using open and safe communication networks. Many participants appreciated the educational elements and, consequently, the app was connected to reliable and continuously updated webpages. Conclusions: IBD patients valued the usability and personalized monitoring offered by the TECCU App. Improvements in the messaging system and continuously updated educational content were introduced to address patients´ needs and favor their engagement.

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P260 Adaptation of TECCU App based on patients’ perceptions for telemonitoring inflammatory bowel disease: A qualitative study using focus groups

Journal of Crohn s and Colitis ◽

10.1093/ecco-jcc/jjz203.389 ◽

2020 ◽

Vol 14 (Supplement_1) ◽

pp. S279-S280

Author(s):

J Del Hoyo Francisco ◽

P Nos ◽

R Faubel ◽

G Bastida ◽

D Muñoz ◽

...

Keyword(s):

Inflammatory Bowel Disease ◽

Qualitative Study ◽

Focus Groups ◽

Communication Networks ◽

Bowel Disease ◽

Communication Process ◽

Data Saturation ◽

Inflammatory Bowel ◽

Educational Contents

Abstract Background Despite the continuous adaptation of eHealth systems for patients with inflammatory bowel disease (IBD), a significant disconnection persists between users and developers. Since non-adherence remains high, it is necessary to better understand the patients’ perspectives on telemonitoring for IBD. The aim of this study was to adapt the TECCU app to the preferences and needs of IBD patients. Methods A qualitative study was carried out using successive focus groups of IBD patients. Meetings were audio-recorded and a thematic analysis approach was employed until data saturation was achieved. The first group included patients who had used the TECCU app in a pilot clinical trial, and subsequent meetings included patients with Crohn’s disease and ulcerative colitis recruited from the Spanish Confederation of patient associations. The information collected at each meeting guided consecutive changes to the platform. Results Data saturation was reached after 3 focus groups, involving a total of 18 patients. Three main themes emerged: (1) platform usability; (2) the communication process; and (3) contents of the platform. All participants indicated that TECCU is easy to use, permitting continuous and personalised feedback. Nevertheless, the platform was adapted according to the patients′ perspectives to foster a flexible follow-up and shared decision-making, using open and safe communication networks. Many participants appreciated the educational elements and the app was connected to reliable and continuously updated webpages. Conclusion IBD patients valued the usability and personalised monitoring offered by the TECCU App. Improvements in the messaging system and continuous updates of the educational contents were performed to address patients′ needs and favour their engagement.

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A Patient-Prioritized Agenda for Information Needs During the COVID-19 Pandemic: A Qualitative Study of Patients With Inflammatory Bowel Disease

Crohn's & Colitis 360 ◽

10.1093/crocol/otab066 ◽

2021 ◽

Vol 3 (4) ◽

Author(s):

Millie D Long ◽

Mary E Grewe ◽

Emily Cerciello ◽

Laura Weisbein ◽

Kyra Catabay ◽

...

Keyword(s):

Inflammatory Bowel Disease ◽

Qualitative Study ◽

Focus Groups ◽

Bowel Disease ◽

Information Needs ◽

Future Research ◽

Virtual Focus Groups ◽

Inflammatory Bowel ◽

Research Questions ◽

The Many

Abstract Background Patients with inflammatory bowel disease (IBD) may be at risk for complications due to the COVID-19 pandemic. We performed a qualitative study to better understand IBD patient experiences and concerns when navigating the COVID-19 pandemic, with the goal of prioritizing patients’ information needs. Methods We conducted a series of semistructured virtual focus groups at 6 months, then member checking focus groups 1 year into the COVID-19 pandemic. We included questions on patients’ experiences navigating the pandemic with IBD, differences in their experience as compared to peers, their concerns and fears, as well as preferred information sources. Transcribed focus groups were coded and content analyzed to summarize key areas of interest and identify themes. We focused on 4 areas in our content analysis process: fears, challenges, information preferences, and research questions. Results A total of 26 IBD patient participants were included in the initial focus groups. Findings highlighted the many challenges faced by patients during the COVID-19 pandemic, ranging from access (bathrooms, medications, healthcare) to significant fears and concerns surrounding medications used for IBD worsening risks of COVID-19. Research questions of importance to patients centered on understanding risks for COVID-19 complications, particularly pertaining to medication utilization, with a shift over time toward understanding COVID-19 vaccination. In our member checking focus groups (n = 8 participants), themes were reiterated, with a central focus of research questions pertaining to COVID-19 vaccination. Conclusions Information needs for patients during the COVID-19 pandemic centered upon understanding disease-specific risks. Identified challenges and fears will inform future research agendas and communication with patients.

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PATIENTS’ JOURNEY THROUGH INFLAMMATORY BOWEL DISEASE (IBD): A QUALITATIVE STUDY

Inflammatory Bowel Diseases ◽

10.1093/ibd/izaa347.127 ◽

2021 ◽

Vol 27 (Supplement_1) ◽

pp. S53-S54

Author(s):

Tina Aswani Omprakash ◽

Norelle Reilly ◽

Jan Bhagwakar ◽

Jeanette Carrell ◽

Kristina Woodburn ◽

...

Keyword(s):

Inflammatory Bowel Disease ◽

Qualitative Study ◽

Patient Experience ◽

Bowel Disease ◽

Quality Care ◽

Diagnostic Testing ◽

Healthcare Providers ◽

Indeterminate Colitis ◽

Patient Journey ◽

Inflammatory Bowel

Abstract Background Inflammatory bowel disease (IBD) is a debilitating intestinal condition, manifesting as Crohn’s disease (CD), ulcerative colitis (UC) or indeterminate colitis (IC). The patient experience is impacted by a lack of awareness from other stakeholders despite growing global disease prevalence. To gain deeper insight of the patient experience, promote quality care, and enhance quality of life, we performed a qualitative study of the patient journey starting from pre-diagnosis through treatment. Methods U.S. patients with IBD were recruited via UC/CD support groups and organizations, social media platforms, blog followers, and personal networks. Participants were screened via an emailed survey and asked to self-identify as medically diagnosed on the basis of reported diagnostic testing. Interviews were conducted by qualitative researchers by phone or web conferencing. Open-ended questions were developed to support and gather information about our learning objectives—primarily, our desire to understand the unique experiences of UC/CD patients in their journey from symptom onset through diagnosis, treatment and maintenance (e.g. “Upon diagnosis, what were your immediate thoughts about the condition?”). This qualitative data were analyzed using Human-Centered Design methodology, including patient typologies (personas), forced temporal zoom (journey maps), forced semantic zoom (stakeholder system mapping), and affinity mapping for pattern recognition of unmet needs. Results A total of 32 patients were interviewed: N=17 CD patients, N=13 UC patients and N=2 IC patients. The interviewed population reflected regional, demographic, and disease-related diversity (Table 1). Five unique, mutually exclusive journeys were identified to understand and classify patient experiences: (1) Journey of Independence, (2) Journey of Acceptance, (3) Journey of Recognition, (4) Journey of Passion and (5) Journey of Determination (Figure 1). Patients with IBD expressed a need for increased awareness, education, and training for providers to shorten the path to diagnosis. Mental health support was found to be a critical gap in care, particularly for major treatment decisions (e.g., surgery). The inclusion of emotional support into the treatment paradigm was perceived as essential to long-term wellness. Patient attitudes and self-advocacy varied on their individual journeys; understanding these journeys may accelerate time to diagnosis and treatment. Conclusion Better understanding of patient journeys can help healthcare providers improve their approach to patient care and coordination.

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Focus Groups for Developing a Peer Mentoring Program to Improve Self-Management in Pediatric Inflammatory Bowel Disease

Journal of Pediatric Gastroenterology and Nutrition ◽

10.1097/mpg.0000000000000473 ◽

2014 ◽

Vol 59 (4) ◽

pp. 487-492 ◽

Cited By ~ 10

Author(s):

Laura M. Mackner ◽

Jessica M. Ruff ◽

Kathryn Vannatta

Keyword(s):

Inflammatory Bowel Disease ◽

Focus Groups ◽

Bowel Disease ◽

Peer Mentoring ◽

Self Management ◽

Mentoring Program ◽

Pediatric Inflammatory Bowel Disease ◽

Inflammatory Bowel

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The invisible paradox of inflammatory bowel disease: An analysis of men’s blogs

Journal of Health Psychology ◽

10.1177/1359105319884595 ◽

2019 ◽

pp. 135910531988459

Author(s):

Lucy Prodgers ◽

Brendan Gough

Keyword(s):

Inflammatory Bowel Disease ◽

Thematic Analysis ◽

Bowel Disease ◽

Disease Risk ◽

Online Support ◽

Critical Realist ◽

Inflammatory Bowel ◽

Health Support ◽

Inductive Thematic Analysis ◽

The Invisible

Inflammatory bowel disease is associated with stigmatising symptoms. Online support platforms eschew stigma, thus may appeal more to men who avoid traditional forms of health support. Using a critical realist netnographic approach and inductive thematic analysis, this study examined six blogs written by UK-based men to explore how inflammatory bowel disease was narrated. Three subthemes and one overarching theme – The (in)visible paradox of IBD – were developed. Findings suggest private aspects of inflammatory bowel disease risk experiential erasure, whereas public aspects lack control. Blogging facilitates the regaining of control, leading to important support connections and a re-imagining of the male inflammatory bowel disease body.

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