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A26 DECONSTRUCTING DISTRESS: STAKEHOLDER ENGAGEMENT FOR EVIDENCE-BASED, PATIENT-CENTERED INTERVENTIONS FOR THE MANAGEMENT OF IBD-ASSOCIATED PSYCHOLOGICAL DISTRESS
BACKGROUND: The growing prevalence of Inflammatory Bowel Disease (IBD) along with increasing complexity of providing high-quality, patient-centered care within a resource-constrained healthcare environment presents a major challenge. IBD-related psychological distress (IBD-PD) is the emotional impac...
Autores principales: | , , , , , , , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
Oxford University Press
2022
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8859316/ http://dx.doi.org/10.1093/jcag/gwab049.025 |
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author | Heisler, C Rohatinsky, N Stewart, M Vallis, M Shepherd, T Wozney, L Cassidy, C Currie, B Phalen-Kelly, K Robar, J Targownik, L E Huard, T Neil, E Jones, J |
author_facet | Heisler, C Rohatinsky, N Stewart, M Vallis, M Shepherd, T Wozney, L Cassidy, C Currie, B Phalen-Kelly, K Robar, J Targownik, L E Huard, T Neil, E Jones, J |
author_sort | Heisler, C |
collection | PubMed |
description | BACKGROUND: The growing prevalence of Inflammatory Bowel Disease (IBD) along with increasing complexity of providing high-quality, patient-centered care within a resource-constrained healthcare environment presents a major challenge. IBD-related psychological distress (IBD-PD) is the emotional impact of IBD and is associated with mental health disorders, increased disease severity, and premature mortality. With estimates of nearly 90% of IBD patients experiencing PD, the inability to provide high-quality, person-centered care for IBD-PD that is proportionate to clinical need is a significant care gap in the Canadian healthcare system. AIMS: To generate stakeholder-derived data to inform the design and development of stepped-intensity, cognitive behavioral therapy-based interventions for IBD-PD using evidence-based, patient–centered interventions and implementation strategies. METHODS: Virtual semi-structured interviews were conducted from September to October 2021. The interview guide was developed iteratively by researchers, IBD care providers, and patient research partners and guided by the COM-B Model of Behaviour and the Theoretical Domains Framework. Questions assessed perceptions, experiences, barriers, and facilitators to accessing IBD-PD care. Adults diagnosed with IBD were recruited from academic centers across Canada. Interviews were co-facilitated by a researcher and patient research partner, audio recorded, and transcribed. Using thematic analysis, codes were generated to identify themes using an inductive approach. RESULTS: As of October 2021, six interviews have been completed, with data collection ongoing. The mean participant age was 34.3 years (range 21–55 years) with 100% of respondents being female. The majority of participants worked full time (4/6, 67%) and all had completed at least high school. Diagnoses of Crohn’s Disease (3/6, 50%) and ulcerative colitis (3/6, 50%) were evenly distributed. Thematic analyses identified five major themes: 1) Lack of holistic care and acknowledgement of IBD-PD; 2) System-level and financial barriers to psychological support; 3) Lack of psychological support from providers with an understanding of IBD; 4) Preference for individualized virtual-based support; 5) Heavy reliance on informal support structures (caregivers) due to lack of access to formal psychological support. CONCLUSIONS: As part of human-centered design, stakeholder engagement is key to understanding behavioral, social, attitudinal, and environmental barriers and facilitators for accessing IBD-PD care. Interviews are ongoing and specific intervention functions will be defined and incorporated into patient-centered implementation strategies. FUNDING AGENCIES: None |
format | Online Article Text |
id | pubmed-8859316 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2022 |
publisher | Oxford University Press |
record_format | MEDLINE/PubMed |
spelling | pubmed-88593162022-02-22 A26 DECONSTRUCTING DISTRESS: STAKEHOLDER ENGAGEMENT FOR EVIDENCE-BASED, PATIENT-CENTERED INTERVENTIONS FOR THE MANAGEMENT OF IBD-ASSOCIATED PSYCHOLOGICAL DISTRESS Heisler, C Rohatinsky, N Stewart, M Vallis, M Shepherd, T Wozney, L Cassidy, C Currie, B Phalen-Kelly, K Robar, J Targownik, L E Huard, T Neil, E Jones, J J Can Assoc Gastroenterol Poster of Distinction BACKGROUND: The growing prevalence of Inflammatory Bowel Disease (IBD) along with increasing complexity of providing high-quality, patient-centered care within a resource-constrained healthcare environment presents a major challenge. IBD-related psychological distress (IBD-PD) is the emotional impact of IBD and is associated with mental health disorders, increased disease severity, and premature mortality. With estimates of nearly 90% of IBD patients experiencing PD, the inability to provide high-quality, person-centered care for IBD-PD that is proportionate to clinical need is a significant care gap in the Canadian healthcare system. AIMS: To generate stakeholder-derived data to inform the design and development of stepped-intensity, cognitive behavioral therapy-based interventions for IBD-PD using evidence-based, patient–centered interventions and implementation strategies. METHODS: Virtual semi-structured interviews were conducted from September to October 2021. The interview guide was developed iteratively by researchers, IBD care providers, and patient research partners and guided by the COM-B Model of Behaviour and the Theoretical Domains Framework. Questions assessed perceptions, experiences, barriers, and facilitators to accessing IBD-PD care. Adults diagnosed with IBD were recruited from academic centers across Canada. Interviews were co-facilitated by a researcher and patient research partner, audio recorded, and transcribed. Using thematic analysis, codes were generated to identify themes using an inductive approach. RESULTS: As of October 2021, six interviews have been completed, with data collection ongoing. The mean participant age was 34.3 years (range 21–55 years) with 100% of respondents being female. The majority of participants worked full time (4/6, 67%) and all had completed at least high school. Diagnoses of Crohn’s Disease (3/6, 50%) and ulcerative colitis (3/6, 50%) were evenly distributed. Thematic analyses identified five major themes: 1) Lack of holistic care and acknowledgement of IBD-PD; 2) System-level and financial barriers to psychological support; 3) Lack of psychological support from providers with an understanding of IBD; 4) Preference for individualized virtual-based support; 5) Heavy reliance on informal support structures (caregivers) due to lack of access to formal psychological support. CONCLUSIONS: As part of human-centered design, stakeholder engagement is key to understanding behavioral, social, attitudinal, and environmental barriers and facilitators for accessing IBD-PD care. Interviews are ongoing and specific intervention functions will be defined and incorporated into patient-centered implementation strategies. FUNDING AGENCIES: None Oxford University Press 2022-02-21 /pmc/articles/PMC8859316/ http://dx.doi.org/10.1093/jcag/gwab049.025 Text en ڣ The Author(s) 2022. Published by Oxford University Press on behalf of the Canadian Association of Gastroenterology. https://creativecommons.org/licenses/by/4.0/This is an Open Access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted reuse, distribution, and reproduction in any medium, provided the original work is properly cited. |
spellingShingle | Poster of Distinction Heisler, C Rohatinsky, N Stewart, M Vallis, M Shepherd, T Wozney, L Cassidy, C Currie, B Phalen-Kelly, K Robar, J Targownik, L E Huard, T Neil, E Jones, J A26 DECONSTRUCTING DISTRESS: STAKEHOLDER ENGAGEMENT FOR EVIDENCE-BASED, PATIENT-CENTERED INTERVENTIONS FOR THE MANAGEMENT OF IBD-ASSOCIATED PSYCHOLOGICAL DISTRESS |
title | A26 DECONSTRUCTING DISTRESS: STAKEHOLDER ENGAGEMENT FOR EVIDENCE-BASED, PATIENT-CENTERED INTERVENTIONS FOR THE MANAGEMENT OF IBD-ASSOCIATED PSYCHOLOGICAL DISTRESS |
title_full | A26 DECONSTRUCTING DISTRESS: STAKEHOLDER ENGAGEMENT FOR EVIDENCE-BASED, PATIENT-CENTERED INTERVENTIONS FOR THE MANAGEMENT OF IBD-ASSOCIATED PSYCHOLOGICAL DISTRESS |
title_fullStr | A26 DECONSTRUCTING DISTRESS: STAKEHOLDER ENGAGEMENT FOR EVIDENCE-BASED, PATIENT-CENTERED INTERVENTIONS FOR THE MANAGEMENT OF IBD-ASSOCIATED PSYCHOLOGICAL DISTRESS |
title_full_unstemmed | A26 DECONSTRUCTING DISTRESS: STAKEHOLDER ENGAGEMENT FOR EVIDENCE-BASED, PATIENT-CENTERED INTERVENTIONS FOR THE MANAGEMENT OF IBD-ASSOCIATED PSYCHOLOGICAL DISTRESS |
title_short | A26 DECONSTRUCTING DISTRESS: STAKEHOLDER ENGAGEMENT FOR EVIDENCE-BASED, PATIENT-CENTERED INTERVENTIONS FOR THE MANAGEMENT OF IBD-ASSOCIATED PSYCHOLOGICAL DISTRESS |
title_sort | a26 deconstructing distress: stakeholder engagement for evidence-based, patient-centered interventions for the management of ibd-associated psychological distress |
topic | Poster of Distinction |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8859316/ http://dx.doi.org/10.1093/jcag/gwab049.025 |
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