Enhancing Physical and Community MoBility in OLDEr Adults with Health Inequities Using CommuNity Co-Design (EMBOLDEN): Results of an Environmental Scan.

Background: Using the comparatively new environmental scan methodology, a protocol was developed and conducted to inform the co-design and implementation of a novel intervention to promote mobility among older adults in Hamilton, Ontario, Canada. The EMBOLDEN program seeks to promote physical and community mobility in adults 55 years and older who face barriers accessing community programs and who reside in areas of high inequity in Hamilton, and to address the following areas of focus: physical activity, nutrition, social participation, and system navigation supports. Methods: The environmental scan protocol was developed using existing models and drew insights from census data, a review of existing services, organizational representative interviews, windshield surveys of selected high-priority neighbourhoods, and Geographic Information System (GIS) mapping. Results: A total of 98 programs for older adults from 50 different organizations were identified, with the majority (92) supporting mobility, physical activity, nutrition, social participation, and system navigation. The analysis of census tract data identified eight high-priority neighbourhoods characterized by large shares of older adults, high material deprivation, low income, and high proportion of immigrants. These populations can be hard to reach and face multiple barriers to participation in community-based activities. The scan also revealed the nature and types of services geared toward older adults in each neighbourhood, with each priority neighbourhood having at least one school and park. Most areas had a range of services and supports (i.e., health care, housing, stores, religious options), although there was a lack of diverse ethnic community centres and income-diverse activities specific to older adults in most neighbourhoods. Neighbourhoods also differed in the geographic distribution number of services, along with the number of recreational services specific to older adults. Barriers included financial and physical accessibility, lack of ethnically diverse community centres, and food deserts. Conclusions: Scan results will inform the co-design and implementation of the Enhancing physical and community MoBility in OLDEr adults with health inequities using commuNity co-design intervention-EMBOLDEN.

Development of the Engage with Impact Toolkit: A comprehensive resource to support the evaluation of patient, family and caregiver engagement in health systems.

INTRODUCTION: Recent shifts in the patient, family and caregiver engagement field have focused greater attention on measurement and evaluation, including the impacts of engagement efforts. Current evaluation tools offer limited support to organizations seeking to reorient their efforts in this way. We addressed this gap through the development of an impact measurement framework and accompanying evaluation toolkit-the Engage with Impact Toolkit. METHODS: The measurement framework and toolkit were co-designed with the Evaluating Patient Engagement Working Group, a multidisciplinary group of patient, family and caregiver partners, engagement specialists, researchers and government personnel. Project activities occurred over four phases: (1) project scoping and literature review; (2) modified concept mapping; (3) working group deliberations and (4) toolkit web design. RESULTS: The project scope was to develop a measurement framework and an evaluation toolkit for patient engagement in health systems that were practical, accessible, menu-driven and aligned with current system priorities. Concept mapping yielded 237 impact statements that were sorted, discussed and combined into 81 unique items. A shorter list of 50 items (rated 8.0 or higher out of 10) was further consolidated to generate a final list of 35 items mapped across 8 conceptual domains of impact: (1) knowledge and skills; (2) confidence and trust; (3) equity and inclusivity; (4) priorities and decisions; (5) effectiveness and efficiency; (6) patient-centredness; (7) culture change and (8) patient outcomes and experience. Working Group members rated the final list for importance (1-5) and identified a core set of 33 items (one for each of the 8 domains and 25 supplementary items). Two domains (priorities and decisions; and culture change) yielded the highest overall importance ratings (4.8). A web-based toolkit (www.evaluateengagement.ca) hosts the measurement framework and related evaluation supports. CONCLUSION: The Engage with Impact Toolkit builds on existing engagement evaluation tools but brings a more explicit focus to supporting organizations to assess the impacts of their engagement work. PATIENT CONTRIBUTION: Patient, family and caregiver partners led the early conceptualization of this work and were involved at all stages and in all aspects of the work. As end-users of the toolkit, their perspectives, knowledge and opinions were critical.

Patient-Oriented Research: Enhancing Partnership-Engaged Knowledge Mobilization for Impact.

Patient-engaged research requires strong patient and applied partnerships to realize innovative knowledge mobilization. Demonstrating impact and sustainability, advancing health equity, evaluating engagement and incorporating flexibility are key ingredients to advance engagement science.

The Aging, Community and Health Research Unit Community Partnership Program (ACHRU-CPP) for older adults with diabetes and multiple chronic conditions: study protocol for a randomized controlled trial.

BACKGROUND: Older adults (≥65 years) with diabetes and multiple chronic conditions (MCC) (> 2 chronic conditions) experience reduced function and quality of life, increased health service use, and high mortality. Many community-based self-management interventions have been developed for this group, however the evidence for their effectiveness is limited. This paper presents the protocol for a randomized controlled trial (RCT) comparing the effectiveness and implementation of the Aging, Community and Health Research Unit-Community Partnership Program (ACHRU-CPP) to usual care in older adults with diabetes and MCC and their caregivers. METHODS: We will conduct a cross-jurisdictional, multi-site implementation-effectiveness type II hybrid RCT. Eligibility criteria are: ≥65 years, diabetes diagnosis (Type 1 or 2) and at least one other chronic condition, and enrolled in a primary care or diabetes education program. Participants will be randomly assigned to the intervention (ACHRU-CPP) or control arm (1:1 ratio). The intervention arm consists of home/telephone visits, monthly group wellness sessions, multidisciplinary case conferences, and system navigation support. It will be delivered by registered nurses and registered dietitians/nutritionists from participating primary care or diabetes education programs and program coordinators from community-based organizations. The control arm consists of usual care provided by the primary care setting or diabetes education program. The primary outcome is the change from baseline to 6 months in mental functioning. Secondary outcomes will include, for example, the change from baseline to 6 months in physical functioning, diabetes self-management, depressive symptoms, and cost of use of healthcare services. Analysis of covariance (ANCOVA) models will be used to analyze all outcomes, with intention-to-treat analysis using multiple imputation to address missing data. Descriptive and qualitative data from older adults, caregivers and intervention teams will be used to examine intervention implementation, site-specific adaptations, and scalability potential. DISCUSSION: An interprofessional intervention supporting self-management may be effective in improving health outcomes and client/caregiver experience and reducing service use and costs in this complex population. This pragmatic trial includes a scalability assessment which considers a range of effectiveness and implementation criteria to inform the future scale-up of the ACHRU-CPP. TRIAL REGISTRATION: Clinical Trials.gov Identifier NCT03664583 . Registration date: September 10, 2018.

Out-of-pocket expenses related to aging in place for frail older people: a scoping review.

OBJECTIVE: The objective of this scoping review was to map and describe the available evidence reporting out-of-pocket expenses related to aging in place for older people with frailty and their caregivers. INTRODUCTION: As the global population ages, there has been increasing attention on supporting older people to live at home in the community as they experience health and functional changes. Older people with frailty often require a variety of supports and services to live in the community, yet the out-of-pockets costs associated with these resources are often not accounted for in health and social care literature. INCLUSION CRITERIA: Sources that reported on the financial expenses incurred by older people (60 years or older) with frailty living in the community, or on the expenses incurred by their family and friend caregivers, were eligible for inclusion in the review. METHODS: We searched for published and unpublished (ie, policy papers, theses, and dissertations) studies written in English or French between 2001 and 2019. The following databases were searched: CINAHL, MEDLINE, Scopus, Embase, PsycINFO, Sociological Abstracts, and Public Affairs Index. We also searched for gray literature in a selection of websites and digital repositories. JBI scoping review methodology was used, and we consulted with a patient and family advisory group to support the relevance of the review. RESULTS: A total of 42 sources were included in the review, including two policy papers and 40 research papers. The majority of the papers were from the United States (n = 18), with others from Canada (n = 6), the United Kingdom (n = 3), Japan (n = 2), and one each from Australia, Brazil, China, Denmark, Israel, Italy, The Netherlands, Poland, Portugal, Singapore, South Korea, Taiwan, and Turkey. The included research studies used various research designs, including cross-sectional (n = 18), qualitative (n = 15), randomized controlled trials (n = 2), longitudinal (n = 2), cost effectiveness (n = 1), quasi-experimental (n = 1), and mixed methods (n = 1). The included sources used the term "frailty" inconsistently and used various methods to demonstrate frailty. Categories of out-of-pocket expenses found in the literature included home care, medication, cleaning and laundry, food, transportation, medical equipment, respite, assistive devices, home modifications, and insurance. Five sources reported on out-of-pocket expenses associated with people who were frail and had dementia, and seven reported on the out-of-pocket expenses for caregivers of people with frailty. While seven articles reported on specific programs, there was very little consistency in how out-of-pocket expenses were used as outcome measures. Several studies used measures of combined out-of-pocket expenses, but there was no standard approach to reporting aggregate out-of-pocket expenses. CONCLUSIONS: Contextual factors are important to the experiences of out-of-pocket spending for older people with frailty. There is a need to develop a standardized approach to measuring out-of-pocket expenses in order to support further synthesis of the literature. We suggest a measure of out-of-pocket spending as a percentage of family income. The review supports education for health care providers to assess the out-of-pocket spending of community-dwelling older people with frailty and their caregivers. Health care providers should also be aware of the local policies and resources that are available to help older people with frailty address their out-of-pocket spending.

Effectiveness of a nurse-led hospital-to-home transitional care intervention for older adults with multimorbidity and depressive symptoms: A pragmatic randomized controlled trial.

OBJECTIVE: To evaluate the effectiveness of a nurse-led hospital-to-home transitional care intervention versus usual care on mental functioning (primary outcome), physical functioning, depressive symptoms, anxiety, perceived social support, patient experience, and health service use costs in older adults with multimorbidity (≥ 2 comorbidities) and depressive symptoms. DESIGN AND SETTING: Pragmatic multi-site randomized controlled trial conducted in three communities in Ontario, Canada. Participants were allocated into two groups of intervention and usual care (control). PARTICIPANTS: 127 older adults (≥ 65 years) discharged from hospital to the community with multimorbidity and depressive symptoms. INTERVENTION: This evidence-based, patient-centred intervention consisted of individually tailored care delivery by a Registered Nurse comprising in-home visits, telephone follow-up and system navigation support over 6-months. OUTCOME MEASURES: The primary outcome was the change in mental functioning, from baseline to 6-months. Secondary outcomes were the change in physical functioning, depressive symptoms, anxiety, perceived social support, patient experience, and health service use cost, from baseline to 6-months. Intention-to-treat analysis was performed using ANCOVA modeling. RESULTS: Of 127 enrolled participants (63-intervention, 64-control), 85% had six or more chronic conditions. 28 participants were lost to follow-up, leaving 99 (47 -intervention, 52-control) participants for the complete case analysis. No significant group differences were seen for the baseline to six-month change in mental functioning or other secondary outcomes. Older adults in the intervention group reported receiving more information about health and social services (p = 0.03) compared with the usual care group. CONCLUSIONS: Although no significant group differences were seen for the primary or secondary outcomes, the intervention resulted in improvements in one aspect of patient experience (information about health and social services). The study sample fell below the target sample (enrolled 127, targeted 216), which can account for the non-significant findings. Further research on the impact of the intervention and factors that contribute to the results is recommended. TRIAL REGISTRATION: clinicaltrials.gov Identifier: NCT03157999.

An evaluation study of caregiver perceptions of the Ontario's Health Links program.

INTRODUCTION: In 2012, the Ontario government launched Health Links (HL), which was designed to integrate care for patients with multimorbidity and complex needs who are high users of health services. This study evaluated perceptions of family and friend caregivers of patients enrolled in the HL program. Research questions included: What are (a) characteristics of caregivers of patients enrolled in HL (b) caregivers' perceptions of the program in relation to HL's guiding principles (patient and family-centred care, accessibility, coordination of services, and continuity of care and care provider) and (c) caregivers' perceptions of the impact of HL on themselves and their care recipient? METHODS: This study involved a survey and qualitative, semi-structured interviews. HL guiding principles (patient and family-centered care, accessibility, coordination of services, and continuity) guided the analysis. RESULTS: Twenty-seven surveys and 16 qualitative interviews were completed. Caregivers reported high levels of strain [Modified Caregiver Strain Index (MCSI) 15.5 (SD 7.03)], mild anxiety [Generalized Anxiety Disorder (GAD 7), 9.6 (SD 6.64)] and depression [Center for Epidemiological Studies Depression Scale (CES-D 10), 11.9 (SD 8.72)]. Regarding the guiding principles, most caregivers had a copy of the HL patient's care plan, although some caregivers noted that their needs were not included in the plan, nor were they asked for input. Caregivers found the program's home and phone visits accessible. Despite minimum wait times for community-based services, other access barriers persisted, (i.e., out-of-pocket costs). HL provided well-coordinated patient services, although some perceived that there was poor team communication. Caregiver perceptions varied on the quality of care provided. Provider continuity provided caregiver relief and patient support: A lack of continuity was related to changes in care coordinators and weekend staff and attrition. CONCLUSIONS: Caregivers of HL patients appreciated patient- and family-centred, accessible, consistent, coordinated and team-based approaches in care. Providers and decision-makers are urged to ensure that programs aimed at high system users address these core concepts while addressing caregivers' needs.

Capacity development among academic trainees in community-based primary health care research: The Aging, Community and Health Research Unit Experience.

Health care system capacity and sustainability to address the needs of an aging population are a challenge worldwide. An aging population has brought attention to the limitations associated with existing health systems, specifically the heavy emphasis on costly acute care and insufficient investments in comprehensive primary health care (PHC). Health system reform demands capacity building of academic trainees in PHC research to meet this challenge. The Aging, Community and Health Research Unit at McMaster University has purposefully employed a capacity building model for interdisciplinary trainee development. This paper will describe the processes and outcomes of the model, outlining how the provision of funding, mentorship, and a unique learning environment enables capacity building in networking, collaboration, leadership development, and knowledge mobilization among its trainees. The reciprocal advancement of the research unit through the knowledge and productivity of trainees will also be detailed.

Enhancing nutritional environments through access to fruit and vegetables in schools and homes among children and youth: a systematic review.

BACKGROUND: Low fruit and vegetable (FV) consumption is one of the top 10 global risk factors for mortality, and is related to increased risk for cancer, cardiovascular disease and diabetes. Many environmental, sociodemographic and personal factors affect FV consumption. The purpose of this review is to examine the effects of interventions delivered in the home, school and other nutritional environments designed to increase FV availability for five to 18-year olds. METHODS: The search included: 19 electronic bibliographic databases; grey literature databases; reference lists of key articles; targeted Internet searching of key organization websites; hand searching of key journals and conference proceedings; and consultation with experts for additional references. Articles were included if: in English, French and Spanish; from high-, middle-, and low-income countries; delivered to anyone who could bring about change in FV environment for 5 to 18 year olds; with randomized and non-randomized study designs that provided before-after comparisons, with or without a control group. Primary outcomes of interest were measures of FV availability. RESULTS: The search strategy retrieved nearly 23,000 citations and resulted in 23 unique studies. Interventions were primarily policy interventions at the regional or state level, a number of curriculum type interventions in schools and community groups and a garden intervention. The majority of studies were done in high-income countries.The diversity of interventions, populations, outcomes and outcome measurements precluded meta-analysis. The most promising strategies for improving the FV environment for children are through local school food service policies. Access to FV was successfully improved in four of the six studies that evaluated school-based policies, with the other two studies finding no effect. Broader state or federally mandated policies or educational programs for food service providers and decision makers had mixed or small impact. Similarly family interventions had no or small impact on home accessibility, with smaller impact on consumption. CONCLUSIONS: The studies have high risk of bias but more rigorous studies are difficult to impossible to conduct in naturalistic settings and in policy implementation and evaluation. However, there are promising strategies to improve the FV environment, particularly through school food service policies.

Influence of maternal birthplace on postpartum health and health services use.

This study examined differences in health status, rates of postpartum depression, perceptions of health services, unmet service needs, and barriers to service use among women born in and outside of Canada at 6 weeks following postpartum discharge from hospital. A secondary analysis of data gathered for a longitudinal cross-sectional survey of postpartum health and service use was conducted. Data from participants recruited from two urban hospitals were used for this analysis (n = 1,045). Analyses examined differences between women born in and outside of Canada. Immigrant women were significantly more likely to experience fair/poor postpartum health status and risk for postpartum depression. Immigrant women were also more likely to rate community health services as fair/poor, and were less likely to be able to get care for emotional health problems. Postpartum health services need to be responsive and accessible in order to meet the needs of immigrant women.