RESUMEN
This qualitative study conceptualised effective communication behaviours of healthcare professionals (gastroenterologists, surgeons, nurses, and general practitioners) and explored communication barriers and facilitators from the perspective of adults with Inflammatory Bowel Disease (IBD). Seventeen qualitative interviews were conducted with people living with IBD in the UK or USA (n = 17) and their spouses (n = 4). An inductive content analysis was firstly applied to participants' accounts to define which healthcare professionals' behaviours and skills were perceived as essential for effective communication. An inductive reflexive thematic analysis elucidated themes of perceived barriers and facilitators experienced when communicating with their IBD healthcare professionals. Thirty-three provider communication behaviours were grouped into nine healthcare professional skills. Five themes encompassed 11 barriers and facilitators: professionals' knowledge and behaviour, unequal power, patient navigation skills, time constraints and demand, and continuity and collaboration of care. For patients and some spouses, enhancing communication in IBD services means increasing patient, family, and health professional knowledge, encouraging collaborative partnership working, and promoting healthcare professional skills to communicate effectively within the reality of time restraints.
RESUMEN
BACKGROUND: Inflammatory bowel diseases (IBDs) are incurable diseases that require lifelong access to health services. Accumulating evidence of inequalities in health care access, experience, and outcomes for individuals with IBD is apparent. This review aimed to describe the inequalities in healthcare access, experiences, and outcomes of care for adults with IBD, to identify research gaps, and to identify future research priorities in this area. METHODS: A scoping review was conducted to retrieve quantitative, qualitative, and mixed methods evidence from 3 databases (EMBASE, Medline, and CINAHL) published between January 1, 2000, and September 27, 2023. RESULTS: Fifty-one studies met the criteria for inclusion. The majority (42 of 51) focused on IBD health outcomes, followed by healthcare access (24 of 51). Significantly fewer investigated patient experiences of IBD healthcare (8 of 51). Most available studies reported on race/ethnic disparities of healthcare (33 of 51), followed by inequalities driven by socioeconomic differences (12 of 51), rurality (7 of 51), gender and sex (3 of 51), age (2 of 51), culture (2 of 51), literacy (1 of 51), and sexuality (1 of 51). Inflammatory bowel disease patients from Black, Asian, and Hispanic ethnic groups had significantly poorer health outcomes. A lack of research was found in the sexual and gender minority community (1 of 51). No research was found to investigate inequalities in IBD patients with learning disabilities or autism. CONCLUSIONS: Further research, particularly utilizing qualitative methods, is needed to understand health experiences of underserved patient populations with IBD. Cultural humility in IBD care is required to better serve individuals with IBD of Black and Asian race/ethnicity. The lack of research amongst sexual and gender minority groups with IBD, and with learning disabilities, poses a risk of creating inequalities within inequalities.
Inequalities in inflammatory bowel disease healthcare access, experiences, and outcomes exist. However, it is unclear what populations and social determinants of health have been investigated in this area. This review synthesizes empirical evidence across a range of inequalities in IBD healthcare.
RESUMEN
The Lepidoptera of North America Network, or LepNet, is a digitization effort recently launched to mobilize biodiversity data from 3 million specimens of butterflies and moths in United States natural history collections (http://www.lep-net.org/). LepNet was initially conceived as a North American effort but the project seeks collaborations with museums and other organizations worldwide. The overall goal is to transform Lepidoptera specimen data into readily available digital formats to foster global research in taxonomy, ecology and evolutionary biology.
