Browsing by Author "Stolee, Paul"

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Aging-related technologies: A multiple case study of innovation processes
(University of Waterloo, 2017-09-21) Koch, Melissa; Stolee, Paul
Introduction: As part of a Canadian research network focused on aging and technology – Aging Gracefully across Environments using technology to support Wellness, Engagement, and Long Life (AGE-WELL) – this thesis explored how technologies currently being developed to support older adults and their caregivers fare through the processes of innovation. This included an exploration of the factors that might facilitate or constrain these new technologies from their initial development to implementation, as well as any policy, regulatory and/or health system issues that may be relevant. Methods: A multiple case study was conducted of four AGE-WELL technology projects. For each, data were collected through: interviews with project members and key stakeholders (n=20); surveys (n=4); ethnographic observations at each project site (n=4); and document reviews. Data were analyzed using directed coding, guided by the ADOPT (Accelerating Diffusion of Proven Technologies for Older Adults) framework (Wang et al., 2010). The results were compared across sites using a cross-case analysis. Results: Challenges related to the initial stages of the work included obtaining ethics clearance, recruitment of study participants, and getting small-scale studies completed. Challenges were also experienced in creating business models – including uncertainties around who might benefit from or pay for the technologies. Facilitators included collaboration among stakeholders (e.g. clinicians, industry, end-users) and support from the AGE-WELL network to form partnerships. Conclusions: Technologies have the potential to help older adults maintain their independence, health and quality of life. Understanding the factors that facilitate or constrain the development and implementation of these types of technologies can help promote their diffusion and adoption.
Assessing the Whole Person: Examining how Psychosocial Factors are currently considered within Frailty Screening Tools
(University of Waterloo, 2019-08-19) Van Damme, Jill; Stolee, Paul
Background: Many operationalisations of frailty exclude psychosocial factors, despite considerable research on the links between frailty and these factors. This study examined older adult/caregiver (OA) and healthcare provider (HCP) perspectives on frailty screening, identify domains, conceptual frameworks and psychometric testing for identified frailty screening tools. Methods: 14 OA and 15 HCP completed audio-recorded interviews, which were transcribed verbatim and analyzed using inductive analysis. A systematic search of the literature was conducted following PRISMA guidelines. MEDLINE, CINAHL, EMBASE, and PsycInfo were searched from inception to December 31, 2018. The biopsychosocial model of health provided a framework for the domain mapping activity, and COSMIN’s Risk of Bias checklist was used to report psychometric properties of the tools to better understand frailty screening tools. Results: The interviews yielded several themes with associated subthemes: definitions and conceptualizations of frailty, factors contributing to frailty, and frailty screening. Sixty-seven frailty screening tools were identified in 79 articles. Screening tools assessed biological factors (100%), psychological factors (73%), social factors (52%) and contextual factors (78%). The frailty syndrome was the prominent framework used in identified studies (n=27). Reliability and validity information was available for 31 studies. Conclusions: When frailty screening tools address psychosocial and biomedical factors, there may be opportunities to enhance the effectiveness of screening through more individualized and patient centered approaches, leading to improved health outcomes.
"...but I know something's not right here": Exploring the diagnosis and disclosure experiences of persons living with ALS
(Public Library of Science (PLOS), 2024) Foldvari, Kathleen M.; Stolee, Paul; Neiterman, Elena; Boscart, Veronique; Tong, Catherine
Background Amyotrophic Laterla Sclerosis (ALS), an incurable motor neuron disease, primarily affects those between the ages of 60-79, and has an approximate post-diagnosis life-expectancy of only two to five years. The condition has an unpredictable but ultimately terminal trajectory that poses challenges for patients, caregivers and healthcare providers. While the diagnosis and disclosure are critical periods for intervention and support, knowledge regarding the relational, communicational and psychodynamic forces that occur within the process of diagnostic disclosure is relatively limited. Objectives The purpose of this study was to explore the experiences of persons living with ALS in the diagnosis and disclosure of that condition, with the support of their caregivers. Methods We conducted a focus group and in-depth individual interviews with people living with ALS (n=9), and caregivers (n=9). The interviews were transcribed, cleaned, and anonymized, and then entered into NVivo 11 for thematic analysis. Results Participants discussed the diagnostic process, including inklings and subtle changes prior to diagnosis, attempts at self-diagnosis, and the lengthy assessment process. Time was also a consideration in the diagnostic disclosure process, in which participants shared how the disclosure was the product of longstanding conversations with their care providers. It was described as rarely a shock to finally have confirmation. Participants shared their information seeking strategies and needs for a diagnosis that, for them, typically came with insufficient information on the disease, prognosis, and next steps. Significance This project serves as a step in bridging the relevant gaps in our knowledge and understanding towards improved person-centered care practices in the diagnosis and disclosure of ALS.
Considerations regarding Incorporating a Cash-for-care Program in Ontario's Approach to Care for Older Adults
(University of Waterloo, 2023-11-13) Andrews, Douglas; Stolee, Paul
Ontario, like Canada more generally, has an aging population, which will exert further pressures on the approaches to providing care to older persons. Certain of these pressures are outlined, with the aid of population projections. Many developed countries, most of which have aging populations, have adopted various approaches to care provision for older adults, which differ from Ontario’s approach in certain ways. Ariaans et al. (2021) developed a typology based on the approaches used in 25 OECD countries but did not include Canada or Ontario in the analysis. This thesis analyzes the care approach used in Ontario along the dimensions developed by Ariaans et al. (2021) to place it within the typology used by Ariaans et al. (2021). A measure used by Ariaans et al. (2021) is whether a cash-for-care program is included. Ontario’s approach does not incorporate a cash-for-care program, whereas some other countries’ approaches do include a cash-for-care program. A scoping review was performed to identify and report on the benefits and disbenefits of a cash-for-care program, identified in the literature, and five themes were revealed. A form of framework analysis was used for more detailed exploration of the gender engraining aspects of cash-for-care programs. The discussion has special relevance to any proposed intervention, such as introduction of a cash-for-care program, because women play a disproportionately large role as carers, both paid and unpaid, and as care recipients in long-term care homes, and may be adversely affected.
Developing a process of risk-stratified care coordination for older adults in primary care
(University of Waterloo, 2016-04-04) Elliott, Jacobi Brianne; Stolee, Paul
BACKGROUND Older Canadians with chronic diseases are the highest users of the health care system. Primary health care (PHC) could play a central, coordinating role in assessing older adults and managing their care, but at present lacks specific strategies to fulfil this role. Priorities for enhanced care coordination in PHC include: 1) consistent processes to identify and assess older persons and create individual care plans aligned with risk levels; 2) improved care coordination and system navigation; 3) improved access to appropriate services; and 4) improved patient and caregiver engagement (Heckman et al., 2013; World Health Organization, 2008; Wagner, 2000; Goodwin et al., 2013). This dissertation project aims to understand how a process of risk-stratified care coordination for older adults can be developed and implemented in primary care. Information gathered to answer this question will provide an in-depth understanding of: i) the local context where the process is implemented, including available health and support services; ii) the process of implementing a screening and referral process in primary care, and iii) the experiences of providers, patients and caregivers with implementation to see how the process might be modified and to understand what factors are important for future spread. METHODS The Chronic Care Model (Wagner et al., 1999), a framework to guide care improvements and a multi-level (environmental, organizational, patient, provider, and program) framework for implementation of health innovations (Chaudoir et al., 2013) were used to guide the three study phases. Overalldata collection and analysis followed a mixed methods design, within a developmental evaluation approach. Data were collected using ethnographic observations (phases 1,2,3), informal feedback (phase 2), individual and focus group interviews (phases 1 and 3), and survey (phases 1 and 3) and tracking forms (phase 3). Data were analyzed using appropriate qualitative and quantitative techniques. Patients, family caregivers, and health care providers were purposefully sampled from two Family Health Teams in Ontario (rural and urban). RESULTS Through focus group interviews with health care providers, lack of care coordination, information sharing, patient engagement, and service awareness were identified. To address these concerns, a process of risk-screening and care coordination for patients 70 + years of age was developed and implemented through an iterative process, in two primary care clinics. 512 patients were screened for level of risk using the interRAI Assessment Urgency Algorithm (AUA) and care was coordinated for individuals based on level of need. Among those screened, 70% of individuals screened as low risk, 25% were screened as moderate risk, and 5% were screened as high risk. As a result, service referrals were made to self-management, community programs, and specialized geriatric services using an online referral mechanism. Although the screening and referral process is time consuming, health care providers, patients and caregivers identified many benefits including early identification of service need, greater awareness of services available in the community, and improved relationships between patients and providers. CONCLUSIONS A process of risk-stratified care coordination was developed and implemented in primary care through an ongoing, iterative process with older adults, caregivers, and health care providers. Future research activities should focus on testing these findings in other models of care (e.g. solo-physician practice) and in other regions.
Developing an integrated geriatric care planning approach in home care
(University of Waterloo, 2018-08-29) Giosa, Justne Lauren; Stolee, Paul
Introduction The demand for home care services in Canada is on the rise, as older adults wish to remain in their own homes as long as possible and deinstitutionalization of care continues to promise significant savings to the system (Better Home Care, 2016, p. 90). The provision of home care services to the older population is complicated by their increased likelihood to have two or more chronic health conditions and tendency to require care from multiple providers to meet their often complex physical, functional, social, cognitive and psychosocial needs (Health Council of Canada, 2012; Statistics Canada, 2015). In Ontario, home care service allocation, care planning and care delivery are further fragmented as a result of the multi-layered and complex funding and coordination model that exists across the province (Health Quality Ontario, 2012; Local Health Integration Networks, 2014a). More integrated care planning at the point-of-care has the potential to improve the delivery and experience of person- and family-centred geriatric home care (Harvey, Dollard, Marshall, & Mittinty, 2018). This study aimed to develop an implementation framework for a new integrated geriatric care planning approach, at the point-of-care in home care. Key objectives included: a) to investigate the geriatric assessment practices of point-of-care providers; b) to collect ideas from older adults and their family/friend caregivers for improving person-and family-centred goal-setting; and c) to co-design solutions for more integrated geriatric care planning with older adults, their family/friend caregivers and point-of-care providers. Methods The Medical Research Council (MRC) Framework for Developing Complex Interventions and the Co-creating Knowledge Translation Framework guided this study (Craig et al., 2013; Powell et al., 2013). A sequential transformative mixed methods design from a pragmatic theoretical lens was applied, using an ideology of collective creativity to meaningfully engage older adults, their family/friend caregivers, and point-of-care providers (Creswell, Clark, Gutmann, & Hanson, 2003; Feilzer, 2010; Sanders & Stappers, 2008; Sanders & Stappers, 2012). Phase one data collection involved scoping the literature, clinical expert key informant interviews (N = 7) and a web-based survey of point-of-care providers (N = 350). Phase two data collection involved solutions-focused key informant interviews with older adults and their family/friend caregivers (N = 25). Quantitative data analysis involved psychometric testing and descriptive statistics. Qualitative data analysis involved inductive and deductive coding techniques and framework analysis (Gale, Heath, Cameron, Rashid, & Redwood, 2013; Lofland, Snow, Anderson, & Lofland, 2006). The data were brought together as an implementation framework during the interpretation phase of this research through a co-design workshop with older adults, their family/friend caregivers and point-of-care providers (N = 19). Results A new survey for assessing geriatric care assessment practices (G-CAP survey) was developed and demonstrated acceptable test-retest reliability (M ICC = 0.58; M kappa = 0.63), discriminative (M t = 3.0; M p = 0.01) and divergent/convergent (M r= |0.39|) construct validity for use with point-of-care nurses, occupational therapists and physiotherapists in home care. Survey data revealed that point-of-care providers use their observation and interview skills (M = 4.50 on a 5 point scale where 1= never and 5= often-always) far more often than standardized assessment tools for client assessment (M = 1.72) and rarely share assessment data with or receive assessment from other providers (M =3.75; M =3.46). Interview data indicated that older adults and their family/friend caregivers want to be engaged in conversations about their goals in relation to their daily lives, personal background and medical history. An implementation framework for integrated geriatric care planning at the point-of-care emerged, involving three key influencing factors: 1) inclusive assessment practices; 2) dialogue-based goal-setting; and 3) flexible communication strategies. Conclusions Integrated care planning for service allocation and point-of-care delivery in geriatric home care would be better supported by assessment, goal-setting and communication practices that equally address the information needs and person- and family-centred care experiences desired by older adults, their family/friend caregivers and point-of-care providers in order to promote virtual home care teams. Future research should focus on prototyping strategies, technology, tools and evaluation criteria and measures to operationalize the implementation framework.
Developing and evaluating an integrated rehabilitative model of care for stroke patients in the home and community care sector
(University of Waterloo, 2020-11-02) Afzal, Arsalan; Stolee, Paul; Heckman, George
Background: Stroke is a leading cause of disability and the third leading cause of mortality in Canada. Access to evidence-based rehabilitative care can reduce the risk of disability and improve health outcomes of stroke survivors. Up until recently, stroke survivors in many health regions in Canada did not have access to intensive and timely community-based rehabilitation which followed the recommended Canadian Stroke best practice guidelines. As a result, stroke survivors suffered negative health outcomes and had suboptimal experiences as they transitioned to home from a hospital or a rehabilitation centre. The Waterloo Wellington health region of Ontario re-designed its stroke care system across the continuum of care, including implementation of an integrated community stroke rehabilitation pathway that is in alignment with the Canadian stroke best practices. Significant investments in resources have been made to reorganize and integrate the stroke care system with the intention of improving patient outcomes and patient experience. This study aimed to evaluate the newly implemented model of care by measuring patient’s health outcomes as well as patient experience. The study also compared the psychometric properties of the interResident Assessment Instrument-Home Care (interRAI HC) with other commonly used assessment tools in the stroke rehabilitation population. Research Objectives: This research study consisted of two primary research questions and a third secondary question. The first research objective was to answer the question, “What are the functional and depression related outcomes of stroke survivors that received stroke rehabilitation through the community stroke rehabilitation model of care? The second research objective is to answer the question, “What is the experience of stroke survivors that received care through the community stroke rehabilitation model of care?” The third research objective aims to answer the question, “How do the psychometric properties of responsiveness and construct validity of specific scales embedded in interRAI HC instrument compare with those of the Barthel Index (BI) and Reintegration to Normal Living Index (RNLI) instruments?” Methods: To evaluate functional and depression related outcomes, an observational study with a pre-post design was used. Secondary home care data were extracted on patient assessments during April 2014 to April 2017 using the interRAI HC, BI and RNLI instruments. Outcomes were measured for the ADL and DRS scales. A control group was formed using data from the Canadian Institute for Health Information (CIHI); this group included stroke survivors who received traditional rehabilitative care or no care post hospital discharge in the community elsewhere in Ontario during the same period. Four regression models were created to explore associations between having functional or depression related impairment and the treatment assignment (treatment vs control group). Models were adjusted using a propensity score variable to control for treatment selection bias. To evaluate patient experience, a Patient Experience Survey for Community-based Rehabilitation (PESCR) instrument was developed for this project using a Program Logic Model (PLM) and also through consultations with subject matter experts and stroke survivors. The PESCR was administered in a home care setting to stroke survivors who completed the rehabilitation program, at the 3 months follow up home visit by a community care coordinator. Participants were asked to provide feedback on: 1) patient experience; 2) transitional care; 3) timeliness of access to care; 4) integrated care; and 5) returning to normal activities. Internal consistency reliability was measured using Cronbach’s alpha coefficient. Construct validity was assessed using the correlation of total scores with a global question. Thematic content analysis was used to review the open-ended responses on the survey. To answer the third research question, responsiveness statistics (standardized response mean and effect size) were used to compare the interRAI HC ADL Long Form and DRS with the BI and RNLI respectively. Construct validity was assessed by the correlation between the ADL Long Form and the BI as well as the correlation between the DRS and the RNLI. Results During the period of 2014 and 2017, 479 stroke survivors were placed onto the community stroke rehabilitation pathway for approximately 12 weeks in the Waterloo Wellington health region. Each stroke survivor received an average of 30.5 rehabilitation home visits with an average time of 56 minutes per visit. The mean age of participants was 77.9 (9.5 SD) and 51.2% were females. After adjusting for baseline characteristics and treatment selection bias, participants in the treatment group were three (2.99) times more likely to be independent in ADLs than those in the control group at the 3 months follow up (Adjusted OR = 2.99, 95% CI 1.53 – 5.86, p < 0.01). Participants in the treatment group were 3.8 times more likely to have no difficulty in IADL activities than those in the control group at the 3 months follow up (Adjusted OR = 3.83, 95% CI 1.77 – 8.25, p < 0.001). There was no statistically significant association found between treatment assignment and depression (Adjusted OR = 0.81, 95% CI 0.47 – 1.38, p > 0.05). Four hundred and four (84.3%) individuals that received care through the Waterloo Wellington’s stroke rehabilitation model of care were asked to complete the patient experience survey. Of these, 134 (33.1%) participants responded including 112 (83.5%) stroke survivors and 22 (16.4%) family members/care givers. Of those that completed the survey, 122 (91.0%) participants were satisfied with the care they received in the community. Based on the open-ended responses, many participants felt that the therapy should have continued beyond the 3-month period post hospital discharge. The responses also suggested that clients and families preferred a longer but less intense physical therapy. Some respondents also felt overwhelmed when the community rehabilitation was initiated within 48 hours of hospital discharge. Some respondents felt that community rehabilitation started too early as stroke survivors and families needed time for adjustment as they transitioned back home. The interRAI HC’s ADL Long Form scale and BI were highly correlated and seem to be evaluating their intended constructs. However, the ADL Long Form was not as responsive as the BI particularly in the subpopulation of stroke population with no or minimal levels of impairment in conducting ADLs. The DRS and RNLI were not correlated with each other and appear to measure different aspects of an individual’s psychosocial outcomes. The responsiveness results of our study suggest that the ADL and DRS scales from the interRAI HC instrument perform well in subpopulations with significant impairment, such as those who scored high on ADL scales, but these scales have less discriminatory power among those with less physical or psychosocial impairment, such as those with scores of zero on ADL or DRS scales. Conclusion: Our study adds to the body of evidence suggesting that a community-based rehabilitation program that is timely, well-coordinated and follows the recommended intensity (2-3 rehabilitation visits per week per discipline for up to 12 weeks), can achieve significant improvements in functional outcomes among a large proportion of stroke survivors who are trying to reintegrate back in the community. The participants had a positive experience overall as well as for specific aspects of care delivery. The lower scores in returning to normal activities suggest that some participants might continue to have unmet needs of functional independence. The interRAIHC’s ADL Long form and the DRS are valuable scales that are already part of the existing bundle of standardized geriatric assessment in the home and community care. Information collected using these assessments can be useful in the stroke rehabilitation population. Significance and Knowledge Translation: This study helps establish evidence for whether investments made in stroke community rehabilitative care in the Waterloo Wellington community are resulting in intended patient outcomes and improved patient experience. Results from this study highlight improvement opportunities for the existing model. It is hoped that this study also helps health planners and service providers to implement similar service delivery models in other regions.
Development and psychometric testing of a measure of the healthcare experiences of persons with dementia and their caregivers
(University of Waterloo, 2018-12-10) Prorok, Jeanette; Stolee, Paul
Background: Dementia affects many older adults. The Canadian Study of Health and Aging estimates that 8.0% of Canadians aged 65 years or older meet the criteria for dementia.(1) Within the subgroup of individuals aged 85 years or older, the prevalence rate increases to 34.5%.(1) While this is already a substantial proportion of the older adult Canadian population, it is only expected to increase as the Canadian population ages. Persons living with dementia and their caregivers have frequent contact with the healthcare system, yet in spite of this there is still much to be desired with regard to optimizing the healthcare experience for persons living with dementia and their caregivers. Moreover, in order to optimize the experience, it is necessary to be able to measure the experience. To date, no such measure exists. The aim of this study was to develop and test the psychometric properties of a measure of healthcare experience of persons living with dementia and their caregivers. Methods: The study was conducted in three phases. Phase I was a qualitative systematic review using a thematic synthesis approach. Several electronic databases were searched to identify studies of dementia healthcare experiences in primary and secondary care. Data were abstracted from included studies and analyzed using qualitative analysis software (NVivo 11). The thematic synthesis resulted in the development of a healthcare experiences model, which identified domains for development of a draft experience measure. Phase II sought the feedback of persons living with dementia and caregivers on the developed measure. Participants took part in either individual or focus group interviews (participant choice). All interviews were recorded and transcribed. Inductive content analysis of transcripts was used to identify modifications which should be made to the measure, as well as aspects of the measure that participants recommended remain unchanged. The revised measure underwent psychometric testing in Phase III. Once again, persons living with dementia and caregivers were recruited to take part. The measure underwent assessment of face validity, content validity, construct validity, internal consistency, and test-retest reliability. Results: Phase I resulted in a healthcare experiences model. It was hypothesized that the experiences of persons living with dementia and caregivers would be sufficiently different to warrant two different frameworks or models, however the experiences were found to have many commonalities and one model was developed. Consequently, this resulted in the development of one measure for both persons living with dementia and their caregivers. Thirteen persons living with dementia and 16 caregivers participated in individual, dyad, and focus group interviews in Phase II. Based on analysis of their feedback, several changes were made to the measure. These included addressing the topic of driving, improving the clarity of instructions, and making modifications to the wording of a few items. Following these modifications, the measure was ready for Phase III. Eighteen caregivers participated in this phase, though only three persons living with dementia could be recruited. Therefore, psychometric analyses were largely only conducted with data from the caregiver group. The measure was found to have good face validity and content validity. Correlation with a global question on the degree to which healthcare expectations were met showed good construct validity (Spearman correlation coefficient = 0.71). Internal consistency was also high (Cronbach’s α = 0.78). Test-retest reliability was found to be fair (ICC(2,1) = 0.62). Conclusions: This three-phase study aimed to develop a measure of healthcare experiences for persons living with dementia and their caregivers. The measure was based on the literature and revised with the input of individuals with lived experience. Caregivers participated in psychometric testing with overall positive results, though further testing is required with persons living with dementia.
Engaging Canada’s Older adults in health TECHnology innovation ecosystems: The ECOTECH Project
(University of Waterloo, 2017-04-28) McNeil, Heather; Stolee, Paul
Background: Technological innovation offers many opportunities and challenges to support the health and well-being of older adults. Increasingly, the value of developing regional infrastructure that supports and drives innovation in local clusters is recognized. This innovation typically arises from collaboration among researchers, government and industry (Etzkowitz & Leydesdorff, 2000). Application of this collaborative framework is emerging in the health sector in the context of innovation to support an aging population. Current trends towards transparency, citizen empowerment and the democratization of health support the need to understand the engagement of end users (specifically older adults and their caregivers) in the development of community infrastructure that supports innovation in health. The Engaging Canada’s Older adults in health TECHnology innovation ecosystems: ECOTECH Project aims to expand our understanding of how older adults and their caregivers might have greater involvement in the regional innovation ecosystems that may support development of new health and aging-related technologies and other innovations. Methods: This project consisted of a three phase integrated mixed methods study with a focus on knowledge exchange throughout. Phase I was a scoping review of the available literature on Regional Innovation Ecosystems (RIEs) to inform hypothesized modifications to current collaborative models of innovation and learn from initiatives outside of health that currently incorporate end user engagement. Phase II included interviews and focus groups with stakeholders including older adults and representatives from university, government, and industry to explore current practices in Canada for engaging end users in health innovation and explore opportunities for participation in Regional Health Innovation Ecosystems (RHIEs). Informed by these results, Phase III was a Concept Mapping exercise following the methodology of Kane and Trochim (2007). Data were collected through and analyzed using the Concept System software (2015). Multivariate statistical techniques (multidimensional scaling and cluster analysis) were applied to create a framework of priorities. Results: Although the literature revealed that there are a variety of roles that end users currently take on in RIEs, little discussion was available on the role that vulnerable populations play. These findings informed the interview phase which revealed an interest and readiness in some engagement of older adults and their caregivers in RHIEs. Enhancing their involvement will require a recognition of the need for diversity of older adult and caregiver representation, consideration of barriers such as system constraints and traditional partnerships, and recognition of multiple roles that older adults could play in health innovation. A seven cluster framework of priorities has emerged with specific actions to be taken to engage older adults and their caregivers in RHIEs. Conclusions and next steps: Greater involvement of older adults and caregivers in health and aging innovation can result in new technologies and processes that are more likely to meet their needs and preferences. This study identified directions and strategies for their enhanced involvement in regional ecosystems for innovation. Continued collaboration with stakeholders will allow the results of this study to be used in developing RHIEs in Canada. The next steps of this work will involve implementation of the framework of priorities in Canadian RHIEs. This evolution of current collaborations will support the development and appropriate adoption of health and aging technologies and innovations that have the potential to improve the health and well-being of older adults and their caregivers.
Evaluation of a Regional Behavioural Support Program
(University of Waterloo, 2019-09-03) Brooks, Kayla; Stolee, Paul
Background: Persons living with dementia may often present with responsive behaviours. Behavioural Supports Ontario (BSO) is a provincial initiative to enhance supports and services for persons living with responsive behaviours in acute care, long-term care and community care settings. Long-term care (LTC) settings use one of three BSO models, including two mobile models and one embedded model, depending on the regional health authority. A survey by Grouchy et al (2017) found the embedded model to be the most preferred in terms of service provision and impact on quality of care. The Waterloo Wellington region of Ontario uses the embedded model; however, it is unclear whether this is adequately meeting the needs of LTC residents and staff, and therefore an evaluation of program outcomes was conducted. Methods: Guided by principles of Utilization-Focused Evaluation (Patton, 2008) and Appreciative Inquiry (Cooperrider & Whitney, 2001), an evaluation of the BSO program was conducted in consultation with BSO members from the regional health authority, family caregivers, and other LTC staff members. The evaluation utilized qualitative (individual and focus group interviews) and quantitative (survey) methods. Areas of focus included service delivery elements related to: 1) collaboration and coordination of healthcare providers; 2) importance of program outcomes; and 3) self-perceived performance of program outcomes. Results: Qualitative interviews revealed themes related to current challenges in the LTC setting, and future directions that are important to consider for the success of the BSO program in the Waterloo Wellington region. A series of program outcomes were also identified throughout these interviews, and rated based on level of importance and performance in a quantitative survey. Generally, program outcomes were rated consistently across importance and performance by participants; however, some discrepancies could be observed. Discussion: Aside from the work done by Grouchy et al (2017) and by Gutmanis et al (2015), there are little data available on the impact of the BSO program. This evaluation helps to fill this gap by looking at successful indicators of the program and determining which components of the embedded BSO model are most important as well as the self-reported ratings of level of performance of each of these outcomes in the LTC homes. These findings may be helpful for regions developing similar programs as well as to direct key areas of focus for future program enhancement.
Healthcare Experiences of South Asian Older Adults in Canada: Aging well, Engagement, and Access
(University of Waterloo, 2023-09-01) Chowdhury, Diya; Stolee, Paul; Tong, Catherine
Background: Racial and ethnic disparities in healthcare have negative consequences for the health and quality of life of immigrants, while the lack of clarity in healthcare systems on how to best provide social and health services for these populations further exacerbates these disparities. With an increase in immigration and in the number of older adults in the Canadian demographic landscape, further research is necessary to understand the diverse ways through which racialized foreign-born older adults experience aging and how structural determinants impact their health and healthcare experience. Objectives: My research aims to (1) describe how foreign-born South Asian older adults define and conceptualize the notion of healthy aging, (2) examine South Asian-born older adults’ experiences and approaches to patient engagement and healthcare decision-making (3) identify and understand the structural determinants and systemic factors influencing the healthcare experiences and well-being of South Asian older adults in Canada. Methods: Employing a descriptive, multilingual, and cross-cultural qualitative approach, 47 South-Asian older adults (60+) were interviewed in a semi-structured format, in Hindi, Tamil, Punjabi, Urdu, Bangla, and English over Zoom. Interviews lasted an average of 84 minutes (min: 32, max: 120). I participated in 167 hours of online community events to support relationship building prior to the interviews. Results: This thesis demonstrates that South Asian older immigrants are a diverse and heterogeneous population and that their conception of healthy aging is strongly influenced by their country of origin. The findings show how racialized foreign-born older adults might provide distinctive perspectives on the aging process and on social theories of aging due to their simultaneous immersion in and belonging to global majority and global minority cultures. The findings also highlight the nuances of language and how miscommunication can arise even when patients and providers are conversing in the same language. Patient engagement and shared decision-making, including the desire for family involvement, are heavily influenced by both culture and gender. Additionally, perceptions of patients regarding the status of physicians can have a notable influence on patient engagement, leading to an increased tendency for patients to agree with healthcare providers’ approach to care. Lastly, this thesis demonstrates participants' perceptions of access to virtual and systemic factors, such as mandatory assimilation and whiteness as a taken-for-granted norm impacting the health and well-being of South Asian older adults.
"It reminds me that I'm still me": Social programs for younger persons with dementia
(University of Waterloo, 2016-08-24) Main, Sarah; Stolee, Paul
Introduction: The needs of persons living with young onset dementia (YOD) may not be met by community programs for older persons with dementia. Two YOD programs in southern Ontario were designed to meet the unique needs of this group. This study aimed to understand: program processes, potential benefits, member goals, and ways in which the program could be improved to better serve the needs of persons living with YOD and their care partners. Methods: The study followed a qualitative action research approach, and explored the potential of Goal Attainment Scaling (GAS) as an individualized outcome measure for individuals in YOD day programs. Semi-structured individual interviews were conducted with 12 program members, 11 care partners, and seven program staff. Focus group interviews were conducted with members (six/site), and staff (seven and five/site). Interviews were tape-recorded, transcribed and analyzed using directed and emergent coding. Goal Attainment Scaling (GAS) is an individualized measurement tool that has been tested for use with persons with dementia, but has not yet been examined in this context. This study aimed to understand whether GAS could be useful in identifying member goals, and as an outcome measure in social programs for persons with YOD. Results and Discussion: Results provide an understanding of the barriers, facilitators, and recommendations for program improvement, from the perspective of persons with YOD, their care partners, and staff. Benefits for program members were highlighted including but not exclusive to, connecting with others around common experiences, and active engagement in activities – members see the program as a club. Program staff described the value of peer support in accommodating the changing needs of members over time. Care partners received enhanced respite, feeling reassured that the person with YOD is in good hands and among peers. GAS was helpful in identifying the types of goals that members have in this context. Members described positive progress on individual goals (GAS), including socializing and getting out in the community; most members showed a one- to four-point increase on the five-point scale. This progress was reflected in the collective T-scores calculated. We were unable to identify goals for those members who struggled with verbal communication skills. Conclusions: Two YOD day programs, operating as social clubs, provided benefits for younger persons with dementia and their care partners. This study indicated components of YOD day programs that are valued by members and care partners, and that should be integrated into the development of a program model and service requirements for these programs. GAS shows promise as an individualized outcome measure in social programs for younger persons with dementia. Alternatives to a discussion based format should be explored for those who struggle with verbal communication. Further investigation of the use of GAS in this context is warranted in larger studies. Knowledge translation and significance: The results of the study may be useful in refining the processes of the existing YOD day programs. Additionally, the results may aid in the development of service requirements and standards for these programs, which may then facilitate the expansion of these services. Highlighting the differences in need for persons with YOD and care partners is anticipated to have policy implications, such as recognition by regulatory bodies of the benefits of separating YOD and LOD services, and the provision of funding to improve the availability and accessibility of such services.
A missing piece of the puzzle: Health care providers’ experiences supporting older homeless adults in outreach settings
(University of Waterloo, 2020-12-18) Sacco, Veronica; Stolee, Paul
BACKGROUND: The older homeless population in Canada is on the rise. Older homeless adults often face multiple health and social challenges, as well as have distinct service needs. While more research is emerging on the characteristics and experiences of older homeless adults, there is limited information on the experiences of health care providers working closely with this population. OBJECTIVES: The purpose of this study was to gain a better understanding of the experiences of frontline health care providers who support older homeless adults (defined as homeless adults aged 50 or older) in outreach settings. This study specifically investigated how they work in their roles with older homeless persons, as well as the challenges and rewards associated with supporting this unique population. METHODS: This qualitative research followed an interpretive description approach. The study consisted of in-depth, semi-structured interviews with a diverse sample of 10 health care providers who support older homeless adults in outreach settings in a mid-sized metropolitan area located in southern Ontario. Concurrent data collection and analysis, along with an iterative approach, were used to conceptualize patterns and key themes in the data. FINDINGS/DISCUSSION: Four key themes emerged from data analysis, including: 1) the client-provider relationship as an essential building block; 2) progression of care that acknowledges the ‘whole person’; 3) collaboration as integral to providers’ work; and 4) system navigation. These themes demonstrated that health care providers offer more than clinical services to their clients. They provide social and health support, are collaborators, system navigators, advocates, and educators. Through their multifaceted roles, health providers encounter individual and systems- level challenges, the latter of which posed the most barriers to delivering optimal care to clients. Some prominent systems-level challenges in their work were: limited funding, insufficient resources and supports tailored to an older homeless population, coordinating care with different sectors, the cyclical nature of homelessness, and stigmatization. Nonetheless, providers also highlighted the rewarding aspects of their roles. They attained personal and professional fulfillment through witnessing their clients’ resilience, celebrating the small wins, having strong interprofessional relationships with colleagues, and having substantial flexibility in their work. CONCLUSION: Facilitating a greater understanding of these health care workers’ experiences can be used to identify strategies on how to further support providers in their roles. Furthermore, findings from this study may assist in informing how service provision can be improved to better meet the needs of older homeless individuals. In line with interpretive description’s emphasis on producing practical knowledge for practitioners, a series of proposed recommendations for practice, policy and future research were outlined.
Policies and Regulations to Enable Innovation and Adoption of Health Technologies for Older Adults: Documented Problems and Proposed Solutions
(University of Waterloo, 2019-12-18) MacNeil, Margaret; Stolee, Paul
Introduction Technologies can help older adults live independently in their homes, but innovators often struggle to get their technologies in the hands of older people, their families and the systems that help to care for them (Naylor et al., 2015). Governments and older adults agree that aging at home for as long as possible is the goal. Technologies exist to help health care institutions, older adults, and caregivers to manage health and wellbeing of older adults (Quinn, O’Brien & Springan, 2018), but the layers of jurisdiction combined with silos across types and levels of care settings are complex for innovators to negotiate. To ensure older adults and their caregivers see the benefits of innovative technologies as quickly as possible, innovators need to better understand the Canadian policy and regulatory landscape, and policy-makers need to better understand policy recommendations which could facilitate innovation and adoption of technologies. The objectives of this research are to i) document and understand facilitators and barriers to health technology adoption in Canada across all stages of innovation; ii) understand how these facilitators and barriers might impact technologies for older adults and caregivers; and iii) create an evidence-informed policy agenda for health technology innovation for older adults. Methods A scoping review guided by Arksey and O’Malley (2005) looked at the barriers and facilitators to health technology innovation and adoption in Canada in published and grey literature. A graphic depiction was developed to explain scoping review results which outlined the stages along the innovation pathway (development, assessment, implementation, sustainability) and how some facilitators and barriers to technology innovation and adoption exist within certain stages, and others are common across stages (Canadian policy context, resources, partnerships). Forty-six qualitative interviews with innovators, industry representatives, researchers and policymakers were analyzed using framework analysis (Ritchie & Spencer, 2003). Deductive coding guided by the graphic depiction developed in the scoping review as well as inductive coding to further explain phenomena within each theme guided data analysis. Through the scoping review and the qualitative interviews, an inventory of facilitators and barriers of health technology innovation was developed. Content analysis (Hsieh & Shannon, 2005) was used to code facilitators and barriers into policy actions. Group concept mapping was used as a systematic approach to integrate group brainstorming, sorting, and rating of policy action statements on their relevance and feasibility (Kane & Trochim, 2007). Results The scoping review generated a comprehensive summary of facilitators and barriers to technology development, assessment and implementation, and how those stages are crosscut by barriers and facilitators in the Canadian policy context, resources and partnerships. Qualitative interviews show resource constraints specific to innovation and adoption of the home and community care sector. Interviews revealed a complex home and community care sector where care delivery activities crowd out the possibility of considering or adopting a technology, exacerbated by the lack of funding for evaluation and implementation of technologies. Group concept mapping identifies which evidence-informed policy options are deemed the most relevant and the most feasible to be implemented, based on input from a diverse stakeholder group. Results reflect funding and system constraints in health care, and the value of diverse partnerships across all stages of technology innovation. Conclusions This work generated an understanding of facilitators and barriers to health technology innovation and adoption; how aging-related technologies might experience barriers and facilitators to health technology innovation and adoption; and expert stakeholders’ perceptions about the relevance and feasibility of potential policy options. These results can inform a policy agenda to facilitate innovation and safe adoption of health technologies for older adults.
PUSHING THE BOUNDARIES OF CONSUMER GRADE WEARABLE DEVICES IN HEALTH CARE FOR OLDER ADULTS
(University of Waterloo, 2020-08-07) Kim, Ben; Lee, Joon; Stolee, Paul
Background: The proliferation of wearable and mobile devices in recent years has led to the generation of unprecedented amounts of health-related data. Together with the growing population of older adults in Canada, the increasing adoption of these technologies created a momentous opportunity to improve the way we deliver, access, and interact with the health care system. Many have recognized the opportunity, yet there is a lack of evidence on how these devices and the growing size of health data can be used to transform health care and benefit us. In Chapter 2, a review of the literature was presented to identify the current evidence of wearable technology and gaps that exist in aging research. Based on the literature review, one promising way to use wearable devices is to assess frailty, which can contribute to improving care and enhancing aging-in-place. Chapter 3 summarizes key concepts related to wearable devices including mobile health, patient-generated health data, big data, predictive algorithms, machine learning, and artificial intelligence. While in-depth mathematical representation of these big data analytics is outside the scope of this dissertation, this chapter provides foundational information along with examples found in health care settings. Objective: The overall aim of this dissertation was to investigate possible use of consumer-grade wearable devices and the patient-generated health data to improve the health of older adults. Methods: This thesis is presented as three individual studies included in Chapters 4 to 6. Study 1 aimed to investigate use of wearable devices to predict and find associations with frailty for community-dwelling older adults receiving home care service. Participants were asked to wear wearable device for 8 days in their home environment and no supervision was provided. Frailty level was assessed using the Fried Frailty Index. Other variables were collected including Charlson Comorbidity Index, independence using the Katz Index, and home care service utilization level. A sequential stepwise feature selection method was used to determine variables that are fitted in multiple variable logistic regression model to predict frailty. Study 2 extended the investigation of possible use of wearable devices for understanding frailty by examining the relationship between wearable device data and frailty progression among critical illness survivors from an intensive care unit at Kingston General Hospital. Participants were assessed for frailty using the Clinical Frailty Scale three times; at admission, at hospital discharge, and at 4-weeks post-hospital discharge. The changes in frailty level between the three time points were used to identify association with wearable device data that was collected for 4 weeks post-hospital discharge. Demonstrating evidence for wearable devices and patient-generated health data in research does not guarantee its use in real life. In Study 3, a mixed method study was conducted to explore clinicians’ and older adults’ perceptions of patient-generated health data. Focus group interviews were conducted with older adults and health care providers from the Greater Toronto Area and the Kitchener-Waterloo region. A questionnaire that aimed to explore perceived usefulness of a range of different patient-generated health data was embedded in the study design. Focus group interviews were transcribed verbatim. Line by line coding was conducted on all interviews followed by thematic analysis. Results: Results from Study 1 indicate data generated from wearable devices are closely linked to frailty level. Results showed a significant difference between frail and non-frail participants in age (p<0.01), home care service utilization (p=0.012), daily step count (p=0.04), total sleep time (p=0.010), and deep sleep time (p<0.01). Total sleep time (r=0.41, p=0.012) and deep sleep time (r=0.53, p<0.01) were associated with frailty level. A receiver operating characteristics area under the curve of 0.90 was achieved using deep sleep time, sleep quality, age, and education level (Hosmer-Lemeshow p=0.88), demonstrating that data from wearable devices can augment the demographic and conventional clinical data in predicting frailty status. Results from Study 2 demonstrated that frailty level increases significantly following a critical illness (p=0.02). Frail survivors had significantly lower daily step counts (p=0.02). Daily step count (r=-0.72, p=0.04) and mean heart rate (r=-0.72, p=0.046) were strongly correlated with frailty level at admission and discharge. Mean standard deviation of heart rate was correlated with the change in frailty status from admission to 4-week follow-up (r=0.78, p<0.05). The results demonstrated a relationship between the worsening of frailty due to critical illness and the pattern of increasing step count (r=0.65, p=0.03) and heart rate (r=0.62, p=0.03) over the 4-week observation period. Results from Study 3 provided an understanding of what older adults and clinicians considered barriers to using patient-generated health data in their care and clinical settings. Four main themes were identified from the focus group interviews: influence of patient-generated health data on patient-provider trust; reliability of patient-generated health data; meaningful use of patient-generated health data and decision support system; and perceived clinical benefits and intrusiveness of patient-generated health data. Results from the questionnaire and focus group interviews demonstrated that older adults and clinicians perceived blood glucose, step count, physical activity, sleep, blood pressure, and stress level as the most useful data for managing their health and delivering high quality care. Discussion: This dissertation provides evidence for using consumer-grade wearable device to assess, monitor, and predict frailty for older adults who receive home care or survived critical illness. The possibility of using a wearable device to assess frailty can enable health care providers to obtain frailty information in a timely manner, which is challenging to acquire otherwise due to a lack of appropriate tools in primary care, ambulatory care, home and community care, critical illness care, and other sectors. There was a distinct relationship between failure to recover frailty level from critical illness and the pattern of daily step count and heart rate. This can enable early detection of critical illness survivors who may not return to pre-critical illness level. It can provide guidance to identify those who may benefit the most from follow-up visits and elevated treatment. To ensure the benefits of patient-generated health data are realized, it must be integrated into health care. There are technical challenges that prevent such integration and discussion around policies and regulations must begin to make progress. Conclusion: This dissertation demonstrated use of wearable devices to assess frailty and identified factors that can hinder the integration of patient-generated health data into health care. It opened a possibility of assessing frailty, expanding the boundaries of current use of consumer-grade wearable devices.
Transitional Care Experiences Across Different Health Care Settings
(University of Waterloo, 2018-08-20) Brooks, Laura; Stolee, Paul
Background: Older adults with multiple chronic conditions typically require care from numerous specialized health care providers across various different settings, making it necessary for patients to transition between these providers and settings (Institute of Medicine, 2001; Coleman, 2003). Transitions of care often result in discontinuities in care, leading to unmet patient needs, adverse events, and poor satisfaction with care, especially in patients with multiple chronic conditions, such as patients with hip fracture (Coleman & Boult, 2003; Naylor, 2000; Naylor, et al., 2009; Jaglal et al., 1996). This project aimed to understand how experiences of patients with hip fracture, family caregivers, and health care providers may differ across different points of transition. Methods: A secondary analysis of 103 qualitative, semi-structured interview transcripts was conducted to gain an understanding of how transitional care experiences may differ across varying settings of care. The analysis was completed using emergent coding techniques according to Braun & Clarke (2006) and Lofland & colleagues (2006). The results of this analysis were presented in a focus group interview, where participants who represented various roles across the health system were asked to comment on how the secondary analysis results fit their experiences and the current context of the health system. Results of the focus group interview were similarly analyzed using emergent coding techniques (Braun & Clarke, 2006; Lofland et al., 2006). Results: Seven key themes, each relating to various distinct transitional care settings, emerged from the secondary analysis: (1) Patients and family caregivers felt uninformed; (2) Multiple different providers contributed to patient and family caregiver confusion; (3) Transitions increased stress in patients and family caregivers; (4) Family caregivers were not considered important in the patient’s care; (5) Care was not tailored to patient needs; (6) System related issues impacted care experience; (7) Providers faced barriers in getting adequate information. The focus group interview results built upon these themes, adding an additional five related themes: (1) Enhancing knowledge and understanding in patients and family caregivers is important for safe and effective transitions; (2) Appropriate collaboration and communication between health care professionals improves transitions; (3) Consistency in health care providers can support system navigation and transitional care; (4) Development of system solutions should involve input from patients, caregivers, and front-line providers; (5) Transitional care may be improved through interventions aimed at enhancing communication and information sharing. The secondary analysis and focus group interview revealed that experiences of patients, caregivers, and health care providers vary by transition type. Specifically, transitions to other formal care settings are experienced differently from transitions to home. Discussion: In transitions to formal care settings, similarities were largely related to feeling confused, while in transitions to home, similarities existed in regards to patients, caregivers and health care providers feeling unprepared. Interestingly, the findings of the secondary analysis related to transitions to home seem to overlap with key factors of existing transitional care interventions, many of which have been developed for transitions to home. Future research should further explore the ways in which other transition settings may impact patient, caregiver, and health care provider experience, and quality of care, for a variety of complex health conditions.
Understanding how mHealth tools can support care coordination between older adults and healthcare providers: a scoping study
(University of Waterloo, 2018-09-17) Fernandes, Paige; Stolee, Paul
Background & Objectives: There is growing interest in the use of health information technologies to support care planning and communication between patients and care providers. This study aimed to: i) review the literature for mHealth tools supporting care coordination; and ii) use these data to inform a consultation process with older adults and primary care providers. Methods: This scoping study used the methodology of Arksey & O'Malley (2005), as supplemented by Levac and colleagues (2010). The consultation included three focus group interviews (n = 11 older adults; n = 6 caregivers) and five individual interviews (n = 4 providers; n = 1 caregiver). Interviews were audio-recorded and transcribed verbatim and analyzed using thematic content analysis (Braun & Clarke, 2006), supported by NVivo 11 software. Results: Scoping review findings included current mHealth challenges, existing features, and supports for tool implementation and use. The consultation process identified that appointment details, a paper version and training were priorities for older adults and tracking medications, symptoms and goals were important for providers. Conclusions: This study confirmed that older adults and providers have an interest in using mHealth tools. This study also highlighted the value of engaging older adults and providers in tool development. These data will inform the development of an mHealth tool to support care coordination.
“You do realize that I'm like totally winging this?”: Exploring the diagnosis, disclosure and coping experiences of persons living with ALS
(University of Waterloo, 2018-10-16) Pauloff, Kathleen; Stolee, Paul
Background: Amyotrophic Lateral Sclerosis (ALS), an incurable motor neuron disease, primarily affects those between the ages of 60-79, and sees an approximate post-diagnosis life-expectancy of only 2-5 years. The condition has an unpredictable but ultimately terminal trajectory that poses a number of challenges for patients, caregivers and healthcare providers. One of these major challenges is the need to make sure that patients’ quality-of-life is as high as possible throughout the disease course. Many factors have been shown to influence quality-of-life, including patients and caregivers’ ability to cope and adapt to the changes associated with the disease. There is some evidence to suggest that the manner in which healthcare providers present the information and empathize with their patients’ thereafter, in addition to patients’ initial reactions to hearing their diagnosis, may hold some predictive value or have an impact on subsequent coping-related outcomes. But still, our knowledge regarding the relational, communicational and psychodynamic forces that occur within the process of diagnostic disclosure is relatively limited. Therefore, further investigation of patients and caregivers’ experiences in the conversations surrounding their ALS diagnosis is necessary to enhance guidelines and practices towards improved coping and quality-of-life support for people living with ALS. Objectives: The purpose of this study was to explore the experiences of persons living with ALS in diagnosis and disclosure, with specific attention paid to their experiences in hearing their diagnosis, and their preferences for care and coping support. The perspectives of those living with the disease and those of their caregivers were considered. Methods: Data were collected from a sample of 18 people consisting of persons with ALS/ PLS (n = 9), family caregivers (n = 7), a professional caregiver (n = 1), and one past caregiver (n = 1). Data were collected during individual (n = 5), dyad (n = 8) and group (n = 9) interviews that were conducted using interview guides comprised of a series of open-ended questions related to the study’s research questions. The interviews were audio-recorded and transcribed verbatim. A thematic analysis of the acquired data was conducted using methods outlined by Braun & Clarke (2006) in order to establish major themes. Coding was done using NVivo 11 software. Results: The data revealed six major themes that specifically relate to the ALS diagnosis process, eight themes relating to the diagnostic disclosure process, and eight themes pertaining to the coping process. Three major themes were established with regards to participants’ desired experiences for support in their coping: hope stimulating conversations and activities, ongoing information provision aimed at curbing uncertainty, and independence, autonomy, lifestyle and normalcy supported throughout the disease course. Significance: This project serves as an initial step in bridging the relevant gaps in our knowledge and understanding toward improved patient-centred care practices in diagnosis, disclosure, care and coping support for persons with ALS. There is also potential for the project’s findings to guide practice and policy developments to benefit the care of persons with other illnesses characterized by short and unpredictable trajectories.