Addressing the need for Indigenous-specific PROMs and PREMS: A focus on methodology.

PURPOSE: Differences in Indigenous worldviews, practices and values highlight the need for Indigenous-specific health quality indicators, such as patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs). The purpose of this paper is to present our methodology, as part of a larger study that sought to develop a framework for creating Indigenous-specific PROMs and PREMs. METHODS: The research design was informed by Indigenous research methodology and a community-based participatory approach. It had three core components: (1) a literature exploration of existing Indigenous-specific PROMs and PREMs; (2) interviews with researchers with expertise in PROMs and PREMs developed for Indigenous populations and community leaders interested in using these Indigenous-informed evaluation tools; and (3) conversations with Indigenous community members about their experiences with health surveys. Interviews were audio-recorded and transcribed verbatim; transcripts were analyzed qualitatively using an inductive and deductive approach. Themes and sub-themes were identified to build a framework that honours Indigenous knowledges and ways of knowing. Results were validated with select research participants and the Project Advisory Committee. RESULTS: Findings demonstrate how relationship building is the necessary starting point for engagement when developing survey instruments with Indigenous peoples. Engagement requires respectful collaboration through all stages of the project from determining what questions are asked to how the information will be collected, interpreted, and managed. A relational stance requires responsibility to Indigenous communities and peoples that goes beyond research carried out using a western scientific lens. It means ensuring that the project is beneficial to the community and framing questions based on Indigenous knowledge, worldviews, and community involvement. CONCLUSIONS: This study employed a collaborative, participatory qualitative approach to develop a framework for creating PROMs and PREMs with Indigenous peoples. The methods described offer concrete examples of strategies that can be employed to support relationship-building and collaboration when developing Indigenous-specific survey instruments.

Pathways: A guide for developing culturally safe and appropriate patient-reported outcome (PROMs) and experience measures (PREMs) with Indigenous peoples.

BACKGROUND: Members of the Indigenous Health Program, BC Children's and Women's Hospitals and the University of British Columbia embarked on a joint project to describe best practices to support the creation of patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) with Indigenous peoples. METHODS: The project involved a review of previous research on patient-reported measures (surveys) that had been specifically developed for Indigenous populations. It also involved interviews with key stakeholders-Indigenous and non-Indigenous academic researchers, and Indigenous community leaders and community members. Themes from the interviews and the literature review were combined and synthesized into pathways/a framework for survey development. RESULTS: The pathways document consisted of 13 protocols and associated teachings for guiding processes and framing survey questions. These encompassed building relationships, community engagement and consultation, benefits to community, ceremony and storytelling, two-way learning, participatory content development, governance and accountability. Findings emphasized the criticality of Indigenous leadership in setting priorities for PROMs and PREMS and establishing relationships that honour Indigenous experiences through all phases of a study. Assessment of the framework's validity with select research participants and the Project Advisory Committee was positive. CONCLUSION: This is the first framework to guide development of PROMs and PREMs with Indigenous peoples and communities. It addresess both process and outcome and includes concrete steps that collaborators can take when establishing a partnership that is respectful and inclusive of Indigenous ways of knowing and being.

Patient Perceptions of Telehealth for Pediatric Type 1 Diabetes During the COVID-19 Pandemic: A Follow-up Study.

OBJECTIVES: There was rapid uptake of pediatric diabetes telehealth at the onset of the COVID-19 pandemic and initial studies demonstrated good usability and satisfaction. As exposure to telehealth continued to increase during the pandemic, we aimed to determine changes in telehealth usability and changes in future preferences for telehealth care. METHODS: A telehealth questionnaire was administered early in the pandemic and again more than 1 year later. Survey data were linked with a clinical data registry. A multivariable proportional odds logistic mixed-effects model was used to assess the association between exposure to telehealth and outcome of future preference for telehealth. Multivariable linear mixed-effects models were used to examine associations between exposure to early and later pandemic periods and the outcome of usability scores. RESULTS: Survey response rate was 40%, with 87 early and 168 later period participants. Virtual visits increased from 46% to 92% of all telehealth visits. Virtual visits improved in "ease of use" (p=0.0013) and "satisfaction" (p=0.045); there were no improvements in telephone visits. The odds of indicating higher preference for more future telehealth visits was 5.1-fold higher in the later pandemic group (p=0.0298). Eighty percent of participants would like their future care to include telehealth visits. CONCLUSIONS: At our tertiary diabetes centre, families' desire for future telehealth care has increased during this 1-year period of additional telehealth exposure, and virtual care has now become the preferred option. This study provides important family perspectives that can help guide development of future diabetes clinical care.

Usability of Virtual Visits for the Routine Clinical Care of Trans Youth during the COVID-19 Pandemic: Youth and Caregiver Perspectives.

We evaluated families' perspectives on the usability of virtual visits for routine gender care for trans youth during the COVID-19 pandemic. An online survey, which included a validated telehealth usability questionnaire, was sent to families who had a virtual Gender Clinic visit between March and August 2020. A total of 87 participants completed the survey (28 trans youth, 59 caregivers). Overall, usability was rated highly, with mean scores between "quite a bit" and "completely" in all categories (usefulness, ease of use, interface and interaction quality, reliability, and satisfaction). Caregivers reported higher usability scores compared to trans youth [mean (SD) 3.43 (0.80) vs. 3.12 (0.93), p = 0.01]. All families felt that virtual visits provided for their healthcare needs. A total of 100% of youth and caregivers described virtual appointments as safer or as safe as in-person visits. A total of 94% of participants would like virtual visits after the pandemic; families would choose a mean of two virtual and one yearly in-person visit with a multidisciplinary team. Overall, virtual gender visits for trans youth had impressive usability. Participants perceived virtual visits to be safe. For the future, a combination of virtual and in-person multidisciplinary visits is the most desired model.

Evaluation of telephone and virtual visits for routine pediatric diabetes care during the COVID-19 pandemic.

AIMS: To evaluate pediatric type 1 diabetes telehealth visits during the COVID-19 pandemic, with a focus on assessing the usability of these visits and gathering patient perspectives. METHODS: An online survey, which included a validated telehealth usability questionnaire, was offered via email to families with a telephone or virtual visit since the COVID-19-related cancellation of routine in-person care. Survey data was linked with the British Columbia (BC) Clinical Diabetes Registry. Outcomes between groups were assessed using Welch's t-test. Associations with type of visit as well as with desire to return to in-person care were assessed with logistic regression models. RESULTS: The response rate was 47%. Of 141 survey respondents, 87 had clinical data available in the BC Clinical Diabetes Registry, and thus were included in our analysis. Overall, telephone and virtual visits were rated highly for usability. Telephone visits were easier to learn to use, and simpler to understand; however, telephone and virtual visits were similar across multiple areas. No factors associated with choosing one type of visit over the other, or with desire to return to in-person care, could be identified. 72% of participants want future telehealth care; however, some would like all future care to be in-person. CONCLUSIONS: Telephone and virtual visits had impressive usability. Many families want telehealth to play a significant part in their future care.

Development and Validation of a Brief Hospital-Based Ambulatory Patient Experience Survey Tool.

Recognition of the value of the patient perspective on services has led healthcare organizations to measure patient care experiences. A brief, generic and psychometrically sound scale to measure patient experiences in ambulatory/outpatient settings in Canada would be useful and is currently lacking. The purpose of this study was to develop and validate an English-language hospital-based ambulatory patient experience survey tool in a Canadian context. Based on a review of more than 20 instruments measuring experiences predominately in non-acute care settings, we initially selected 27 items to be included in the questionnaire, addressing quality dimensions of access, communication, continuity and coordination, shared decision making, emotional support, trust/confidence, privacy, patient-reported impact and physical environment. The survey instrument was subsequently tested among 1,219 ambulatory patients, and its psychometric properties were assessed. A final questionnaire was produced with 14 items and two emerging subscales: Patient-Provider Communication and Overall Quality of Experience, as determined by a factor analysis. The items within the scale showed high construct validity. Reliability was also excellent for the instrument. The applicability of this tool in supporting quality improvement initiatives is discussed.

Voices of Postpartum Women: Exploring Canadian Women's Experiences of Inpatient Postpartum Care.

OBJECTIVE: To explore and understand postpartum inpatient experiences in a Canadian context. METHODS: Inpatients at BC Women's Hospital & Health Centre were invited to complete a questionnaire during their postpartum stay. Completed responses were obtained from 178 women, representing 44% of all postpartum inpatients during the survey period. RESULTS: Overall, women had positive experiences during their postpartum stay: 93% rated their experience as "excellent" or "very good"; 78% felt that nurses never seemed rushed or too busy to care for them; and 85% of women found the nurses to be very helpful with breastfeeding. Two-thirds of the women had concerns about going home that were related to infant feeding, feeling overwhelmed, and not knowing how to settle their baby. Other areas of improvement pertained to the hospital environment being less restful than desired. Certain groups needed additional support, such as primiparous women, women who had Caesarean deliveries, and women from certain ethnic groups. CONCLUSION: This exploration of women's inpatient postpartum experiences in a Canadian hospital provides valuable information for improving service delivery, including assessing hospital routines, providing information/education, and improving discharge planning. Given that postpartum experiences are not uniform across demographic groups, an alternative or augmented approach to postpartum care may be warranted for some women.

Intercountry Consensus Building: Lessons From Developing a Chronic-Conditions Self-Management Support Framework.

Self-management support initiatives that aim to improve the self-care of chronic conditions are considered a key part of a health promotion strategy for addressing the impacts of long-term illness. Given the growth of these activities and still evolving evidence base, thoughtful intercountry collaborations with subject matter experts can be an effective way to expedite building self-management support capacity, promoting the advancement of evidence, and developing effective policies and programs. The challenge is to find an effective consensus building process that promotes linkages between researchers and health promotion decisions makers across vast geographical boundaries and limited resources. This paper describes the international, multistage, face-to-face, and online process that was used for developing an international framework for self-management support by researchers, educators, health care providers, policy makers, program managers/directors, program planners, consultants, patient group representatives, and consumers in 16 countries. We reflect on key lessons from this international initiative and discuss how this type of process may be useful for other health promotion groups trying to exchange knowledge and build consensus on how to move a field of research, policy, and/or practice forward, and advance the evidence-base of practice and the relevance of research.

Toward consensus on self-management support: the international chronic condition self-management support framework.

Self-management support (SMS) initiatives have been hampered by insufficient attention to underserved and disadvantaged populations, a lack of integration between health, personal and social domains, over emphasis on individual responsibility and insufficient attention to ethical issues. This paper describes a SMS framework that provides guidance in developing comprehensive and coordinated approaches to SMS that may address these gaps and provides direction for decision makers in developing and implementing SMS initiatives in key areas at local levels. The framework was developed by researchers, policy-makers, practitioners and consumers from 5 English-speaking countries and reviewed by 203 individuals in 16 countries using an e-survey process. While developments in SMS will inevitably reflect local and regional contexts and needs, the strategic framework provides an emerging consensus on how we need to move SMS conceptualization, planning and development forward. The framework provides definitions of self-management (SM) and SMS, a collective vision, eight guiding principles and seven strategic directions. The framework combines important and relevant SM issues into a strategic document that provides potential value to the SMS field by helping decision-makers plan SMS initiatives that reflect local and regional needs and by catalyzing and expanding our thinking about the SMS field in relation to system thinking; shared responsibility; health equity and ethical issues. The framework was developed with the understanding that our knowledge and experience of SMS is continually evolving and that it should be modified and adapted as more evidence is available, and approaches in SMS advance.

Embracing Our "Otherness".

Theories on the importance of holistic and spiritual healing within nonconventional models of care are vast, yet there is little written about the practical, clinical-level interventions required to deliver such practices in collaborative cross-cultural settings. This article describes the learning experiences and transformative journeys of non-Indigenous nurse practitioners working with a Cultural Lead from an Indigenous community in British Columbia, Canada. The goal of the Seven Sisters Healthy Heart Project was to improve heart health promotion in an Indigenous community through a model of knowledge translation. The article describes the development of a bridge between two cultures in an attempt to deliver culturally responsive programming. Our journeys are represented in a phenomenological approach regarding relationships, pedagogy, and expertise. We were able to find ways to balance two worlds-the medical health services model and Indigenous holistic models of healing. The key to building the bridge was our willingness to be vulnerable, to trust in each other's way of teaching and learning, and allowing diverse viewpoints and knowledge sources to be present. Our work has vast implications for health promotion in Indigenous communities, as it closes the gap between theory and practice by demonstrating how Indigenous models can be integrated into mainstream health promotion practices.

Women-Centered and Culturally Responsive Heart Health Promotion Among Indigenous Women in Canada.

Most women in Canada confront a combination of bio-psychosocial factors that put them at risk for cardiovascular disease. The challenge for health planners is to address these factors while contextualizing interventions that meet the specific needs of particular social and cultural groupings. The article will discuss a women-centered, group-based heart health pilot initiative designed to engage with indigenous approaches to healing. The nurse practitioners co-led the group with a representative from the indigenous community to balance women-centered practices with more traditional and culturally appropriate ones. In particular, indigenous processes, such as a Talking Circle, combined with indigenous knowledge/content were integrated into the pilot program. The project was evaluated to investigate its outcomes (how the intervention impacted the participants) and processes (how participants perceived the intervention). Evaluation involved analysis of the Talking Circle's content, a focus group, field observations, and self-completed surveys. Most women made changes regarding their diet, some began physical activities, and others focused on better managing their emotional health. Women viewed the group as successful because it embraced both women-centered and culturally appropriate health promotion practices. The intervention created a culturally safe space for learning and transformation. The findings confirm the need for employing culturally relevant, gender-specific approaches to heart health promotion that are situated in and responsive to community needs.