Access, relationships, quality and safety (ARQS): a qualitative study to develop an Indigenous-centred understanding of virtual care quality.

BACKGROUND: Among Indigenous peoples in Canada, access to high-quality healthcare remains an important determinant of health. The shift to virtual and remote-based approaches, expedited during the COVID-19 pandemic, influenced the ways in which individuals accessed care and the quality of care received. This study sought to determine which elements are required for effective and sustainable virtual care approaches for delivery of primary care to Indigenous patients and develop quality indicators grounded in Indigenous community and experience. We share a conceptual framework to understand how Indigenous patients access and define high-quality virtual care, grounded in Indigenous patient experiences and worldviews. METHODS: Using principles of patient-oriented research, we grounded this work in social justice and participatory action research. We sought to gain an in-depth understanding of the Indigenous experiences of virtual care and specifically of primary care. This was developed through semistructured interviews with Indigenous patients and Indigenous virtual primary care providers. RESULTS: Thirteen participants were interviewed between 5 August 2021 and 25 October 2021. Using Framework Analysis, we constructed four domains including access, relationships, quality and safety as being primary facets of defining high-quality Indigenous virtual primary care. DISCUSSION: The results presented here indicate that the shift to virtual care, largely seen in response to the COVID-19 pandemic, does not compromise quality of care, nor does it lead to negative patient experiences. Optimal care is possible in virtual settings for some care needs and types of appointments and has the potential to decrease barriers to access and improve patient experiences of safety and quality while facilitating patient/provider relationships. CONCLUSION: In summary, high-quality Indigenous virtual care benefits from attention to patients' experiences of access, relationships, safety and quality with their service providers and healthcare teams.

The Indigenous primary health care and policy research network: Guiding innovation within primary health care with Indigenous peoples in Alberta.

In 2015, the Truth and Reconciliation Commission of Canada released its Final Report with 94 Calls to Action, several of which called upon the health care sector to reform based on the principles of reconciliation. In the province of Alberta, Canada, numerous initiatives have arisen to address the health legacy Calls to Action, yet there is no formal mechanism to connect them all. As such, these initiatives have resulted in limited improvements overall. Recognizing the need for clear leadership, responsibility, and dedicated funding, stakeholders from across Alberta were convened in the Spring of 2019 for two full-day roundtable meetings to provide direction for a proposed Canadian Institutes of Health Research Network Environment for Indigenous Health Research that focused on primary health care and policy research. The findings from these roundtable meetings were synthesized and integrated into the foundational principles of the Indigenous Primary Health Care and Policy Research (IPHCPR) Network. The IPHCPR Network has envisioned a renewed and transformed primary health care system to achieve Indigenous health equity, aligned with principles and health legacy Calls to Action advocated by the Truth and Reconciliation Commission of Canada.

Standardized Feeding Approach Mitigates Weight Loss in Infants with Congenital Heart Disease.

OBJECTIVE: To evaluate the effect of a standardized feeding approach using a clinical nutrition pathway on weight-for-age Z score (WAZ) over hospital length of stay (HLOS) for infants with congenital heart disease (CHD). STUDY DESIGN: A 10-year retrospective cohort study examined eligible infants who underwent neonatal cardiac surgery between July 2009 and December 2018 (n = 987). Eligibility criteria included infants born at least 37 weeks of gestation and a minimum birth weight of 2 kg who underwent cardiac surgery for CHD within the first 30 days of life. Using the best linear unbiased predictions from a linear mixed effects model, WAZ change over HLOS was estimated before and after January 2013, when the standardized feeding approach was initiated. The best linear unbiased predictions model included adjustment for patient characteristics including sex, race, HLOS, and class of cardiac defect. RESULTS: The change in WAZ over HLOS was significantly higher from 2013 to 2018 than from 2009 to 2012 (ß = 0.16; SE = 0.02; P < .001), after controlling for sex, race, HLOS, and CHD category, indicating that infants experienced a decreased WAZ loss over HLOS after the standardized feeding approach was initiated. Additionally, differences were found in WAZ loss over HLOS between infants with single ventricle CHD (ß = 0.26; SE = 0.04; P < .001) and 2 ventricle CHD (ß = 0.04; SE = 0.02; P = .04). CONCLUSIONS: These data suggest that an organized, focused approach for nutrition therapy using a standardized pathway improves weight change outcomes before hospital discharge for infants with single and 2 ventricle CHD who require neonatal cardiac surgery.

Don't Push Your Luck! Educational Family Board (Not Bored) Game for School-Age Children Living with Chronic Conditions.

PURPOSE: Children who are living with chronic conditions may be supported in self-care through enjoyable active learning and family social processes. This research focused on development and evaluation of "Don't Push Your Luck!", an educational board game designed to inspire family discussion about chronic conditions, and help affected children learn about self-care choices and consequences. DESIGN AND METHODS: Mixed-method research was conducted with families from one outpatient Cystic Fibrosis Clinic and four Hemophilia Treatment Centres in Canada and United States (N=72). In phase I, board game prototype and questionnaires were refined with affected boys, siblings, and parents living with hemophilia (n=11), compared with families living with cystic fibrosis (n=11). In phase II, final board game was evaluated with families living with hemophilia (n=50). Data collection included pre-post-game questionnaires on decision-making and Haemo-QoL Index©, and post-game enjoyment. Analysis included descriptive statistics, inferential statistics (non-parametric), and qualitative themes. RESULTS: Findings revealed this game was an enjoyable and effective resource to engage families in self-care discussions. Key themes included communication, being involved, knowing, decisions and consequences, and being connected. Qualitative and quantitative findings aligned. Statistical significance suggests the game enhanced family engagement to support decision-making skills, as parents identified that the game helped them talk about important topics, and children gained insight regarding family supports and self-care responsibility. CONCLUSIONS: This board game was an effective, developmentally appropriate family resource to facilitate engagement and conversation about everyday life experiences in preparation for self-care. PRACTICE IMPLICATIONS: There is promising potential to extend this educational family board game intervention with a greater range of school-age children and families living with chronic conditions.