Storytelling of Indigenous patient and family advocates engaged in patient-oriented research initiatives in the field of inflammatory bowel disease.

Background and aim: The history of colonization and its ongoing impact poses significant health disparities among Indigenous communities. We aimed to centre the voices and stories of Indigenous patients and family advocates (IPFAs-Indigenous patients living with inflammatory bowel disease [IBD] and family members of Indigenous individuals with IBD) engaged in patient-oriented research projects and who are part of the IBD among Indigenous Peoples Research Team (IBD-IPRT). Methods: IPFAs and Indigenous and non-Indigenous researchers of the IBD-IPRT followed a storytelling research methodology to let IPFAs share their stories as research team members. Four IPFAs documented their experiences as IBD patients, advocates, and research partners. The stories were analyzed for themes. The identified themes were collaboratively verified with the IPFAs. Results: The full stories shared by the IPFAs were transcribed and presented in this paper. Following a background analysis of themes in the 4 narratives, we were also able to identify 4 key themes that could be relevant to improving patient-oriented research initiatives: (1) health promotion, (2) leadership and voice, (3) community engagement, and (4) disease awareness and access to care. Trust building, strong relationships, and effective partnerships are core components for conducting patient-oriented research with Indigenous community members. Conclusions: Indigenous patient engagement in health research is crucial to ensure that lived experiences, knowledge, and cultural values are adequately adopted to improve research outcomes. Centering IPFAs in IBD research can promote cultural awareness and actionable recommendations to improve health outcomes for individuals with IBD and their families and caregivers.

Increasing Prevalence and Stable Incidence Rates of Inflammatory Bowel Disease Among First Nations: Population-Based Evidence From a Western Canadian Province.

BACKGROUND: There is limited to no evidence of the prevalence and incidence rates of inflammatory bowel disease (IBD) among Indigenous peoples. In partnership with Indigenous patients and family advocates, we aimed to estimate the prevalence, incidence, and trends over time of IBD among First Nations (FNs) since 1999 in the Western Canadian province of Saskatchewan. METHODS: We conducted a retrospective population-based study linking provincial administrative health data from the 1999-2000 to 2016-2017 fiscal years. An IBD case definition requiring multiple health care contacts was used. The prevalence and incidence data were modeled using generalized linear models and a negative binomial distribution. Models considered the effect of age groups, sex, diagnosis type (ulcerative colitis [UC], Crohn disease [CD]), and fiscal years to estimate prevalence and incidence rates and trends over time. RESULTS: The prevalence of IBD among FNs increased from 64/100,000 (95% confidence interval [CI], 62-66) in 1999-2000 to 142/100,000 (95% CI, 140-144) people in 2016-2017, with an annual average increase of 4.2% (95% CI, 3.2%-5.2%). Similarly, the prevalence of UC and CD, respectively, increased by 3.4% (95% CI, 2.3%-4.6%) and 4.1% (95% CI, 3.3%-4.9%) per year. In contrast, the incidence rates of IBD, UC, and CD among FNs depicted stable trends over time; no statistically significant changes were observed in the annual change trend tests. The ratio of UC to CD was 1.71. CONCLUSIONS: We provided population-based evidence of the increasing prevalence and stable incidence rates of IBD among FNs. Further studies are needed in other regions to continue understanding the patterns of IBD among Indigenous peoples.

Evolution of a community-centred experiential learning module: A mixed-methods approach to promote social accountability and community partnership in undergraduate medical education.

This article was migrated. The article was marked as recommended. Background: Education in social determinants of health (SDH) has become an important part of medical curricula, facilitated increasingly through students' experiential learning with communities. The Community and Workplace Centred Learning Experience (CWCLE) module of the University of Saskatchewan, Canada, intends to integrate and extend second-year medical students' attitudes, skills, and knowledge about SDH and community resources. We aimed to: 1) Solicit students' self-evaluation of their ability to perform module learning objectives, 2) Assess module impact on student attitudes toward SDH, 3) Obtain feedback from community partners and students about their community experiences, and 4) Use feedback to collaboratively develop recommendations to enhance the CWCLE module. Methods: We used a mixed-method approach to combine quantitative data with stories and personal experiences. We developed an online survey for two cohorts of students who had completed the module, soliciting students to self-evaluate their perceived abilities to perform the module's learning objectives and evaluating students' attitudes towards SDH. We invited representatives from community agencies involved in the CWCLE module to participate in focus groups. We also held separate focus groups with students who participated in the online survey to elaborate on their survey comments. Results: In total, 145 students participated in the online survey (response rate=72.5%). Eleven community agency representatives and seven students participated in five focus groups. Our results demonstrate that medical students benefit from community-based experiential learning of SDH and community resources. We trace evaluations and discussions in the ongoing development of this community-based experiential learning module from its initial, primarily medical-school driven designs, towards a substantial involvement of community-based organizations in its operation and continuing redevelopment. Conclusions: Our mixed method offered us a better understanding of module impact and opportunities for improvement. This module evaluation and reform generated opportunities for community partners to influence decisions in medical education and led to a collaborative evolution of a community-centred learning experience. Medical schools should actively engage community partners in teaching behavioural and social components of the curriculum and acknowledge their partners' expertise to promote community engagement and social accountability in medical education.

Reduced prevalence of small-for-gestational-age and preterm birth for women of low socioeconomic position: a population-based cohort study comparing antenatal midwifery and physician models of care.

OBJECTIVE: Our aim was to investigate if antenatal midwifery care was associated with lower odds of small-for-gestational-age (SGA) birth, preterm birth (PTB) or low birth weight (LBW) compared with general practitioner (GP) or obstetrician (OB) models of care for women of low socioeconomic position. SETTING: This population-level, retrospective cohort study used province-wide maternity, medical billing and demographic data from British Columbia, Canada. PARTICIPANTS: Our study included 57 872 pregnant women, with low socioeconomic position, who: were residents of British Columbia, Canada, carried a singleton fetus, had low to moderate medical/obstetric risk, delivered between 2005 and 2012 and received medical insurance premium assistance. PRIMARY AND SECONDARY OUTCOME MEASURES: We report rates, adjusted ORs (aOR), and 95% CIs for the primary outcome, SGA birth (

Size Matters: Package Size Influences Recognition of Serving Size Information.

PURPOSE: To identify the impact of package size on an individual's use of serving size information. The hypothesis was that participants would make more serving size assumption errors on a nutrition facts table (NFT) interpretation task when assessing packages that appear as a single serving but contain multiple servings, compared with products that appear as a multi-serving and contain multiple servings. METHODS: Sixty participants were randomized into 1 of 3 conditions (n = 20 each); products that appeared as a single serving and contain a single serving (SSSS), products that appeared as a single serving and contain multiple servings (SSMS), and products that both appear as a multi-serving and contain multiple servings (MSMS). All 3 conditions were tested on a NFT interpretation task while participants were being presented food items that were appropriate to their given condition. RESULTS: Participants in the SSMS (9.55 ± 7.78) condition made significantly more serving size assumption errors than the SSSS (0.00 ± 0.00; P < 0.001) and MSMS (0.40 ± 0.75; P < 0.001) conditions. CONCLUSIONS: Participants did not address serving size information when they perceived a product to be a single serving. This resulted in people misinterpreting nutritional and caloric content of foods that were single unit foods with multiple servings.

Waiting for scheduled surgery: A complex patient experience.

The aim of this study was to understand experiences of wait time among patients awaiting scheduled orthopaedic or cardiac surgery. Using a qualitative approach, 32 patients completed two interviews each regarding their wait time experiences, including effects of waiting. Patient experiences of wait time varied regardless of actual wait time and included reports of restriction, uncertainty, resignation, coping and opportunity. Participants' waiting experiences indicate a complex relationship between greater symptom severity and less tolerance for wait time. We suggest healthcare resources focus on alleviating the deleterious effects of waiting for certain patients rather than reducing absolute wait times.

An Abundance of Selves: Young Adults' Narrative Identities While Living With Cancer.

BACKGROUND: Identity negotiations of people living with cancer have been shown to be significant psychosocial challenges throughout cancer trajectories but have not been adequately explored among young adults with cancer. Narrative approaches might help to reveal moments of (dis)empowerment that affect their identity negotiations. OBJECTIVE: The aim of this study is to explore how young adults speak to their identities in relation to their narratives of having cancer and receiving care. METHODS: A total of 21 young adults (18-45 years old) provided cancer narratives through semistructured life history interviews. Thematic narrative analysis was used to determine how participants represented themselves in their stories. RESULTS: Participants used a wide diversity of identities well beyond those most familiar in dominant discourses (eg, patients, survivors, and fighters), and their identities frequently changed at significant "turning points" in their narratives, especially in relation to good and bad experiences of care. CONCLUSIONS: Cancer-related identities often undergo personal and social negotiation over time, and not just among young adults still feeling the effects of treatment. Psychosocial oncology could take further steps toward incorporating this fluidity and multiplicity within the discipline's discourses of identity. IMPLICATIONS FOR PRACTICE: The identities gathered here may contribute to a more comprehensive toolkit of narrative resources for empowering young adults (and others) with cancer, serving as a starting point for negotiating identities with their care providers. Our findings raise questions about which identities should be fostered and how healthcare professionals might be (unknowingly) involved in patients' identity negotiations.

Developing and pilot-testing a Finding Balance Intervention for older adult bereaved family caregivers: A randomized feasibility trial.

PURPOSE: This study aimed to test the feasibility of a psychosocially supportive writing intervention focused on finding balance for older adult bereaved family caregivers of advanced cancer patients. METHOD: The Finding Balance Intervention (FBI) was tested for feasibility, acceptability and potential influence on increasing hope, coping and balance through a multi-method pilot study employing a randomized trial design with 19 older adults with an average age of 72 years. The intervention group received the FBI and a follow up visit from an RN-RA. The control group received the FBI at a second visit. The FBI, a theory-based intervention was developed from grounded theory qualitative data, applying Delphi methods to design a self-administered, psychosocially supportive, writing intervention for older adults who had lost a spouse after caregiving. RESULTS: Feasibility was assessed and specific modifications identified. The FBI was easy to use, acceptable and of benefit. The FBI offered validation of emotions and ways to discover new ideas to find balance, which may enable bereaved caregivers to move forward on a unique journey through grief. The treatment group showed a statistically significant increase in restoration-oriented coping and higher oscillation activity. CONCLUSIONS: The results suggest the FBI was easy to use, acceptable and of benefit. A full scale study, with specific modifications to the design, is needed to test the effectiveness of this innovative intervention.

Tricksterdom in narratives of young adult cancer: performances of uncertainty, subversion, and possibility.

OBJECTIVE: As people with cancer attempt the difficult task of giving voice to life with illness, they often turn to mythic figures and stories (e.g., when people talk about battling cancer or embarking on a journey toward recovery). Little attention has been paid to the mythic figure of the trickster, recently identified by Arthur Frank (2009) as a prominent trope in some narrative accounts of illness. We investigated the prevalence of 3 tricksterly themes expressed within young adults' stories of cancer: destabilizing social or cosmic order (uncertainty), challenging dominant expectations for human life (subversion), and exploring alternative ways of viewing the world (possibility). METHOD: We recruited 21 young adults with cancer from across Canada and conducted semistructured interviews. We then analyzed their stories using some elements of thematic, structural, and dialogical/performative narrative analysis-drawing attention to what was told and how/to whom were they told (Crossley, 2000; Frank, 2012; Riessman, 2008). RESULTS: We describe each of the 3 themes in turn (i.e., uncertainty, subversion, and possibility) using excerpts from 6 interview transcripts, and show how they meaningfully converge into an interpretive framework of tricksterdom. CONCLUSION: We conclude that the 3 themes of uncertainty, subversion, and possibility seem to come together as tricksterly performances, disrupting audiences' expectations of more typical forms of cancer narratives and calling attention to less familiar, structured, and "tellable" ways of narrating illness.

Time while waiting: patients' experiences of scheduled surgery.

Research on patients' experiences of wait time for scheduled surgery has centered predominantly on the relative tolerability of perceived wait time and impacts on quality of life. We explored patients' experiences of time while waiting for three types of surgery with varied wait times--hip or knee replacement, shoulder surgery, and cardiac surgery. Thirty-two patients were recruited by their surgeons. We asked participants about their perceptions of time while waiting in two separate interviews. Using interpretative phenomenological analysis (IPA), we discovered connections between participant suffering, meaningfulness of time, and agency over the waiting period and the lived duration of time experience. Our findings reveal that chronological duration is not necessarily the most relevant consideration in determining the quality of waiting experience. Those findings helped us create a conceptual framework for lived wait time. We suggest that clinicians and policy makers consider the complexity of wait time experience to enhance preoperative patient care.

Waiting for surgery from the patient perspective.

The aim of this study was to perform a systematic review of the impact of waiting for elective surgery from the patient perspective, with a focus on maximum tolerance, quality of life, and the nature of the waiting experience. Searches were conducted using Medline, PubMed, CINAHL, EMBASE, and HealthSTAR. Twenty-seven original research articles were identified which included each of these three themes. The current literature suggested that first, patients tend to state longer wait times as unacceptable when they experienced severe symptoms or functional impairment. Second, the relationship between length of wait and health-related quality of life depended on the nature and severity of proposed surgical intervention at the time of booking. Third, the waiting experience was consistently described as stressful and anxiety provoking. While many patients expressed anger and frustration at communication within the system, the experience of waiting was not uniformly negative. Some patients experienced waiting as an opportunity to live full lives despite pain and disability. The relatively unexamined relationship between waiting, illness and patient experience of time represents an area for future research.