From Lawn Care to Home Care

Decision letter: Genomic epidemiology of COVID-19 in care homes in the east of England

Background: Ontario’s health system goal is to put clients at the centre with the right care, at the right time, in the right place. To do this there is a need to integrate home care with community-based services. This type of integration should, in theory, better support people to continue living well, with dignity and safety, in their homes and communities for as long as possible. A critical component of improving integrated home and community care is gathering self-reported data of client experience, through patient-reported experience measures (PREMs). When client reported data is integrated into health system improvement initiatives, there is a trend towards better health outcomes, including the adoption of safe practices, better communication, and improved clinical indicators. However, no PREM currently exists to measure client experience of integrated home and community care.
 Aims: We aimed to engage clients of home care services and family/friend caregivers to clients receiving home care in Ontario, Canada to tells us about the usability of a newly developed PREM for emerging models of integrated home and community care. This engagement should ensure the PREM is easy to comprehend and straightforward, making it more likely to generate reliable and valid information . 
 Methods: We engaged with clients and caregivers (n=10) with diverse gender expressions, racial backgrounds, abilities, and socioeconomic status in one-to-one interviews to identify issues related to answering the questions on our newly developed PREM. Participants were asked to “think aloud and tell us everything that comes to mind, whether it seems important or not” while completing the PREM. This approach elicited information about the clarity of the instructions, their understanding of the questions, the item stem and scale match, and what led them to their answer. We asked additional question related to comprehension of terms, ambiguity, value-laden words, double-barreled questions, positive and negative wording, and length. Two members of the research team conducted thematic analysis of the generated transcripts and came to consensus regarding required changes to the scaling and items.
 Results: At the time of the conference, the detailed results of the cognitive testing will be available. We anticipate sharing recommendations from users of home care on 1) creating clear scaling options, 2) wording items clearly, 3) the appropriate length of the questions and overall survey, and 4) clarifying jargon or unintended meaning of questions. The finalized draft PREM will be shared.
 Learnings: Results will provide insight into how to clarify wording and scale a survey about client experience of integrated home and community. This will help to improve survey design and user experience, ultimately enhancing potential for a reliable and valid measure of patient experience. 
 Next steps: The PREM will be adapted and psychometrically tested. If found to be reliable and valid for use in home and community care, it will be rolled out at a home care service provider organization across Canada in late 2023. This PREM data should be integrated with other metrics of the quadruple aim to best guide healthcare improvement.

Engaging Communities as Home Care Providers, Utilizing a Social Enterprise Model

Background: People want to live well in their homes and communities for as long as possible. To support this, some home care services in Ontario, Canada are restructuring to integrate medical and personal care, with community-based social care and services (e.g., friendly visiting, meals, and transportation). Measures of client experience, referred to as ‘patient-reported experience measures’ (PREMs) are important for guiding health system improvements in a way that is meaningful to clients. A current challenge is that existing PREMS are insufficient for measuring client experience of new models of home and community care.
 Aims: This study engaged clients, family/friend caregivers, and health and social care providers in a participatory process to develop relevant items for a PREM for integrated home and community care. This engagement process aimed to provide opportunities for client feedback to support integrated care and ensure the new PREM will collect data that can inform health system improvements in ways that are most meaningful to clients and caregivers.
 Methods: Guided by Streiner et al.’s (2015) approach, we engaged experts-by-lived experience in content and face validity testing of an item pool matrix to determine relevance and coverage of domains and items. The matrix consisting of 3 domains, 14 categories, and 72 items was based on a literature review of home and community PREMs (32 PREMs with 550+ items) and interviews with healthcare leader experts (n=6). To conduct content and face validity testing we held three focus groups with home care recipients and family/friend caregivers (n=17) as well as individual interviews with health and social care providers working in home care (n=15). We analyzed transcripts line-by-line to generate themes related to face and content validity of each item. 
 Results: Participants agreed that client experience of innovative home and community care is well captured by three domains: equity, continuity, and life care. They also agreed the corresponding 72 proposed items had face validity. Suggestions to improve content validity included that items be adapted to recognize the role of caregivers; the role of primary providers and/or coordinators in delivering well organized care; and shifting from a focus on self-management to having needed supports to stay in the home, and collaboratively developing care plans. Participants excluded several items due to being vague or not meaningful, such as asking, “my providers understood my needs”. Based on feedback, 22 items were removed from the matrix.
 Learnings: Engaging experts-by-lived experience in development of PREMs helps ensure the data generated from PREMs will be meaningful and useful for guiding health system improvements that matter to clients. Relying on existing literature and traditional expert opinion alone did not guarantee relevance or coverage of items. 
 Next steps: The feedback from participants will be used to further refine and scale the PREM items. Clients of home care and family/friend caregivers will then be re-engaged in cognitive testing to identify issues related to answering the questions on the scale. Once complete, the PREM will undergo psychometric testing.

Prior to 1997, home health agencies (HHAs) were reimbursed on a fee-for-service basis and had incentives to provide more services. The 1997 Balanced Budget Act (BBA) reduced payments for home care services to help control Medicare spending. To examine the length of stay in home care before and after the 1997 BBA. Cross-sectional study of home care patients in the 1996 and 1998 National Home and Hospice Care Surveys, which surveyed 1053 HHAs in 1996 and 1088 HHAs in 1998. Nationally representative random sample of home care patients with Medicare coverage in 1996 (4127 patients) and 1998 (4051 patients). Length of stay in home care (based on the number of days a patient was enrolled in home care services). From 1996 to 1998, unadjusted median length of stay decreased by 16 days for all home care patients (60-44 days, P =.002). The decrease affected for-profit HHAs more than not-for-profit HHAs (111-55 days [51% decrease, P =.002] vs 46-36 days [22% decrease, P =.042]). In a Cox proportional hazards model of time to discharge from home care, post-BBA year (1998) was associated with a shorter length of stay in home care (adjusted hazard ratio [aHR] for home care discharge, 1.39 [95% confidence interval [CI], 1.19-1.61]), and for-profit status was associated with a longer length of stay in home care (aHR, 0.82 [95% CI, 0.71-0.94]) after adjusting for patient demographics, diagnoses, and functional status. After the 1997 BBA, length of stay in home care decreased among Medicare patients, particularly among those receiving care from for-profit HHAs.

Activities of Daily Living in Nursing Home and Home Care Settings: A Retrospective 1-Year Cohort Study

Medically Fragile Children Challenge Medical Home Concept

Developing and implementing a national approach to home care has been an ongoing and sometimes controversial point of debate between the provinces and the federal government for a few years. We agree that Canada is ready for such a model, but the policy instruments imbedded in the model must be carefully considered in our commentary we expand on several points made by the lead paper, but focus specifically on the proposed model with respect to the suggested policy instrument recommended for financing the model and some of the key issues surrounding the delivery of home care. It is imperative from our perspective that the current political environment be fully understood to appreciate the context in which the model would be introduced. We argue t ha t understanding the complexities of home care is one thing, resolution of the issues in the model proposed is another. Although the federal government has agreed that there will be more dollars infused through the Canada Health and Social Transfer, the suggested policy instrument recommended for financing the model does not assure that home care programs will receive the funding that is required when other important and competing interests are considered (e.g., cancer treatment and waiting lists). We are at a point where there is incredible potential to reconfigure the health system such that home and community-based care can play a much greater role, but how do we fully realize that potential? The first step is to take the opportunity afforded by the huge surplus of the federal government and to invest heavily in developing home care -to create a system by design. That means thinking about funding directed to home care as an investment, and not as a cost. More funding, however, has limited utility without a sense of where the funding should be targeted, and for what purpose. We agree in principle that a national approach is required to advance and support home care to meet the needs of the future with the correct policy instruments. What happens in the next couple of years will shape that long-term model of home care. Whether that be by default or design is contingent on the willingness and commitment of the politicians and policymakers, and the degree to which the Canadian public have a voice that will be heard.

PII: S0022-3476(95)70392-6

Many older persons with advanced dementia receive terminal care in nursing homes, others remain in the community with home care services. To describe and compare the end-of-life experience of persons dying with advanced dementia in the nursing home and home care settings. Retrospective cohort study. Persons 65 years or older with advanced dementia who died within 1 year of admission to either a nursing home in Michigan between July 1, 1998 until December 31, 2000 (n = 2730), or the state's publicly funded home and community-based services from October 1, 1998 until December 31, 2001 (n = 290). Data were derived from the Minimum Data Set (MDS)-Nursing home Version 2.0 for the institutionalized sample, and the MDS-Home Care for the community-based sample. Variables from the MDS assessment completed within 180 days of death were used to describe the end-of-life experiences of these two groups. Nursing home residents dying with advanced dementia were older, had greater functional impairment, and more behavior problems compared to home care clients. Few subjects in the nursing home (10.3%) and home care (15.6%) cohorts were perceived to have less than 6 months to live. Only 5.7% of nursing home residents and 10.7% home care clients were referred to hospice. Hospitalizations were frequent: nursing home, 43.7%; home care, 31.5%. Pain and shortness of breath were common in both settings. End-of-life variables independently associated with nursing home versus home care included: hospice (adjusted odds ratio [AOR] 0.26, 95% confidence interval [CI], 0.16-0.43), life expectancy less than 6 months (AOR 0.31; 95% CI, 0.20-0.48), advance directives (AOR, 1.48; 95% CI, 1.11-1.96), pain (AOR, 0.38; 95% CI, 0.29-0.50), shortness of breath (AOR 0.20; 95% CI (0.13-0.28), and oxygen therapy (AOR, 2.47; 95% CI, 1.51-4.05). Persons dying with advanced dementia admitted to nursing homes have different characteristics compared to those admitted to home care services. Their end-of-life experiences also differ in these two sites of care. However, palliative care was not optimal in either setting.

With the aging of the population, especially in Canadian rural areas, providing home care services will be particularly challenging as care is needed by increasingly vulnerable rural older adults in increasingly vulnerable rural settings with fewer services, supports, and caregivers. The purpose of this paper is to present examples of the federal (e.g., First Nations and Inuit Home and Community Care) and provincial (e.g., Ontario's Community Care Access Centres) home care policy context in which Canadian home care is provided, to identify the challenges faced by home care providers in meeting the needs of rural residents, and to offer solutions to these challenges. The most pressing challenges in aging rural settings are to ensure effective access to quality health care services and to address the shortage of home care providers, especially registered nurses. Provincial and federal home care models would be enhanced by an integrative model of continuing care and a national home care framework that would address the broader funding and human resource issues. Other uniquely rural recruitment and retention strategies are suggested such as maximizing the “fit” between the home care provider's attributes and the needs and expectations of the rural community. Sufficient public funding and resources for rural and remote home care programs are needed to develop and implement (1) the expanded role of case managers; (2) health care teams that include both professionals and paraprofessionals; (3) standardized assessment tools and reporting systems; (4) innovative use and training in the use of technology; and (5) partnerships that optimize resources and build support networks for rural home care providers, clients, and family and friend caregivers.

Background: Since 205, SE Health has been on a bold change leadership journey to operationalize transitional models of home and community care with 20+ system partners including hospitals and regional health authorities. Join us to learn and share successes, challenges, and opportunities for scale and spread of community-driven integrated care solutions. Audience: As one of Canada largest not-for-profit social enterprises working across the care continuum, SE Health is in a unique position to develop, implement, evaluate, scale, and spread evidence to support meaningful health system change. The SE Research Centre is embedded in SE Health and conducts applied health services research to develop evidence-based solutions to tough health and social care problems. We invite anyone interested in this type of learning health system environment policy leaders, decision-makers, researchers, providers, clients, and families to come together in this workshop around the Quadruple Aim and Health Equity as a common language for transparent dialogue on progress, results, and impact of integrated transitional care programs. Approach: This workshop will begin with an overview (5 minutes) of a scoping review that revealed a need for more evidence to understand the current and future influence of integrated home and community care programs on Quadruple Aim and Health Equity outcomes across the health system. Next, we will present the SE Health case study (20 minutes) of developing and testing transitional models of home and community care, using Quadruple Aim and Health Equity as a frame for sharing about successes and opportunities. Details will include: ) Population Health: Implementation of a comprehensive standardized assessment tool at intake and discharge (interRAI Home Care), with opportunities to maximize use of this data to support goal-oriented care planning and outcome evaluation; 2) Client experience: A primary clinician model design to support continuity, with opportunities to standardize outcome measurement around what matters most to clients and families; 3) Provider Experience: Workforce stabilization through operationalization of a dedicated and salaried staffing model, with room to optimize discipline-specific scopes of practice across interdisciplinary teams; 4) Value: 20+ programs with high volumes that free up hospital beds for people who need them, and a goal to refine program inclusion criteria to better predict service utilization patterns; 5) Equity: Improved client and caregiver access and linkages to publicly-funded community-based care that emphasizes social determinants of health, with opportunities for additional authentic engagement of end-users in program evaluation. For most of the workshop (45 minutes), participants will be divided into small groups and asked to identify micro, meso, and maco system barriers and solutions for further scale and spread of transitional models of home and community care reflecting on the case study and their own experiences. Groups will have an opportunity to consider the following research knowledge products to support their ideation: ) a Holistic Health Needs Report; 2) the Client Experience Survey of Integrated Home and Community Care; 3) The Observe, Coach, Assist and Report framework for team-based care; 4) The Resource Utilization Groups III Home Care (RUG-III-HC) Case Mix Algorithm; and 5) The Participatory Research to Action Framework. Outcomes: In the final part of the workshop (0 minute), small groups will have an opportunity to share back to the larger group one actionable idea to improve evidence-based decision-making in scale and spread of integrated transitional models of home and community care, using the research knowledge product at their table. Facilitators will summarize key takeaways for strategic clarity among funders, decision-makers, researchers, providers, clients and families. At the end of the workshop, participants will have an opportunity to take away summaries and copies of the knowledge products for further consideration in their own change leadership on integrated care.

Since the early 1990s home care increasingly has emerged as a favoured policy response to the growing costs which an aging population poses for our health care system. This paper explores the early history of home care for the elderly in Ontario during the first three decades after World War II. It demonstrates that policy debates over the merits of home versus institutional care for the elderly, and community-based over hospital-based approaches to home care are not recent phenomenon but have been on going since the 1940s within the public health and social services sector. The paper examines why home care failed for so long to develop beyond the margins of Ontario's highly institutionalized health care system. It also explores how earlier visions of community-based home care, designed to help the elderly age in place, increasingly were obscured by an exclusive preoccupation with home care's "cost effectiveness" as an alternative to hospital or residential care, a rationale which discounted home care's costs to unpaid and principally female care givers. The paper concludes that the Ontario health ministry's systematic devaluing of caregiving and home maker skills, the fear of undermining the family's willingness to provide care, as well as the failure to develop effective mechanisms for integrated regional health care planning, also impeded the progress of home care's development before the 1980s.

Many cystic fibrosis patients with Pseudomonas lung infections receive intravenous (IV) antibiotics and chest physiotherapy (CPT) at home. Previous studies have suggested that home care, in the setting of a clinical study, is as efficacious as hospital care. This report compares the outcomes of home care with minimal supervision to outcomes of hospital care. We compared two groups of similar age and severity of lung impairment. Patients met strict definitions for home or hospital treatment (27 home care courses/33 hospital care courses). Five patients completed six courses of both home care and hospital treatment. Treatment in both groups included intravenous antibiotics and CPT. Primary outcome measures included changes in pulmonary function between the start of treatment and after 2 weeks of therapy, duration of treatment, and intervals between antibiotic courses. In hospitalized patients, forced vital capacity (FVC) increased by 17.4 +/- 3.1% (mean +/- SEM), and forced expiratory volume in one second (FEV1) increased by 23.3 +/- 4.1%, both significant at P < 0.001. The FVC and FEV1 of patients treated at home increased by 10.2 +/- 2.0% and 13.7 +/- 2.6% respectively, neither of which was a significant improvement. Similar results were found in the five patients completing both home and hospital courses. The average duration of treatment was twice as long and time between IV antibiotic courses only two-thirds as long for those treated at home compared with the hospitalized patients. Previous reports have claimed that home care in the setting of a prospective study is as efficacious as hospital care. Our experience indicates that routine home care with minimal supervision of patients is less effective than hospital care. Furthermore, home care as delivered to patients in this report increased the overall cost of care by as much as 30% because of longer and more frequent courses of antibiotic therapy.

Background: Long-term care (LTC) reform was an international priority well before the COVID-19 pandemic. While strategies to promote de-institutionalization, rehabilitation, caregiver support and enhanced home and community care have varied by country in terms of implementation and success, the pandemic universally reinforced existing system-specific barriers and weaknesses. In Canada, heightened access issues and silo-ed delivery of community-based medical, functional and social care and support services contributed to increased caregiver burnout and growing residential care waitlists.&#x0D; Aims: This study aimed to develop an alternative model to residential LTC that would enable older adults to live, age and receive care at home long-term. The specific objectives were to: 1) describe variation in medical, functional and psychosocial ‘life care’ needs of community-dwelling older adults; 2) develop a model of needs-based care with packages to support variation in needs; and 3) to assess preliminary feasibility of the model using the Ontario, Canada (population 15 million) health care market. &#x0D; Approach: An exploratory, sequential, mixed methods design was applied (5). Phase 1 involved historical analysis of 2017-18 Ontario interRAI home care assessments (n=283,601) and 2018-19 Ontario service utilization data (n=115,000) to develop unique patient vignettes. Phase 2 was a 6-week modified eDelphi process with interdisciplinary home care clinicians (n=42) to develop care packages for the model, including types and dose of care and services. Six focus groups (n=67) were then conducted with older adults, caregivers and health and social care providers across Ontario to validate and refine the model. Phase 3 explored feasibility of the emerging model through comparison of the home care patient vignettes with the needs of the residential LTC population using 2017-18 Ontario interRAI data (n=115,000). Preliminary costing of the model was based on existing system per diems and direct care costs in comparable transitional care models.&#x0D; Results: A model of ‘Long-term Life Care’ at home (LTLifeC model) includes care packages to meet the dominant life care needs of 6 unique patient groups representing known predictors of LTC home admission: social frailty, caregiver distress, chronic disease, cognition/ behaviours, medical complexity, and geriatric syndromes. Overlap in care needs of home care and LTC populations confirms potential to shift care to the community; yet current home care clients receive six times less daily care hours on average, compared to residential LTC standards. New LTLifeC packages of home-based interdisciplinary care ranged from 3.1-8.9 hours daily, including comprehensive assessment, integrated care planning, direct care provision and community referral(s). Initial cost comparisons suggest plausible short and long-term system benefits of model adoption.&#x0D; Learnings: Evidence-informed decision making for sustainable home and community care as part of an integrated system of LTC requires attention to both routinely collected health information, or ‘big data’, and expertise by lived-experience. Adoption of the LTLifeC model will require decision-making to prioritize societal values for living and aging at home and in community. &#x0D; Next Steps: An evaluation framework will be developed to guide pilot implementation and testing of the LTLifeC model through the lens of the quadruple aim.