ABSTRACT
There is increasing research and public policy investment in the development of technologies to support healthy aging and age-friendly services in Canada. Yet adoption and use of technologies by older adults is limited and rates of abandonment remain high. In response to this, there is growing interest within the field of gerotechnology in fostering greater participation of older adults in research and design. The nature of participation ranges from passive information gathering to more active involvement in research activities, such as those informed by participatory design or participatory action research (PAR). However, participatory approaches are rare with identified barriers including ageism and ableism. This stigma contributes to the limited involvement of older adults in gerotechnology research and design, which in turn reinforces negative stereotypes, such as lack of ability and interest in technology. While the full involvement of older adults in gerotechnology remains rare, the Older Adults' Active Involvement in Ageing & Technology Research and Development (OA-INVOLVE) project aims to develop models of best practice for engaging older adults in these research projects. In this comment paper, we employ an unconventional, conversational-style format between academic researchers and older adult research contributors to provide new perspectives, understandings, and insights into: (i) motivations to engage in participatory research; (ii) understandings of roles and expectations as research contributors; (iii) challenges encountered in contributing to gerotechnology research; (iv) perceived benefits of participation; and (v) advice for academic researchers.
More investments are being made to develop technologies that support healthy aging and age-friendly services in Canada. However, not many older adults use these technologies and those who do tend to stop using them after some time. Gerotechnology is a field of study that combines an interest in gerontology and technology. Within gerotechnology, researchers are learning more about how to encourage older adults to participate in research and the design of new technologies. There are different ways that older adults participate in gerotechnology research, with some approaches being more passive than others. In participatory design and participatory action research projects older adults are encouraged to engage more actively as co-researchers. However, researchers have found that there are some limitations to engaging older adults actively in research, including ageism and ableism, meaning that older adults are perceived to be capable of contributing based on their age and cognitive or physical abilities. These stereotypes have limited how often and how much older adults actually contribute to technology research and design. The Older Adults' Active Involvement in Aging & Technology Research and Development (OA-INVOLVE) project aims to address these gaps. In this comment paper, we present a conversation between academic and older adult researchers who have contributed to OA-INVOLVE. The goal of this conversation is to explore together: (i) motivations to engage in participatory research; (ii) understandings of roles and expectations as research contributors; (iii) challenges encountered in contributing to gerotechnology research; (iv) perceived benefits of participation; and (v) advice for academic researchers.
ABSTRACT
INTRODUCTION: Patient and caregiver engagement is critical, and often compromised, at points of transition between care settings, which are more common, and more challenging, for patients with complex medical problems. The consequences of poor care transitions are well-documented, both for patients and caregivers, and for the healthcare system. With an ageing population, there is greater need to focus on care transition experiences of older adults, who are often more medically complex, and more likely to require care from multiple providers across settings. The overall goal of this study is to understand what factors facilitate or hinder patient and caregiver engagement through transitions in care, and how these current engagement practices align with a previously developed engagement framework (CHOICE Framework). This study also aims to co-develop resources needed to support engagement and identify how these resources and materials should be implemented in practice. METHODS AND ANALYSIS: This study uses ethnographic approaches to explore the dynamics of patient and caregiver engagement, or lack thereof, during care transitions across three regions within Ontario. With the help of a front-line champion, patients (n=18-24), caregivers (n=18-24) and healthcare providers (n=36-54) are recruited from an acute care hospital unit (or similar) and followed through their care journey. Data are collected using in-depth semi-structured interviews. Workshops will be held to co-develop strategies and a plan for future implementation of resources and materials. Analysis of the data will use inductive and deductive coding techniques. ETHICS AND DISSEMINATION: Ethics clearance was obtained through the Western University Research Ethics Board, University of Windsor Research Ethics Board and the University of Waterloo Office of Research Ethics. The findings from this study are intended to contribute valuable evidence to further bridge the knowledge to practice gap in patient and caregiver engagement through care transitions. Findings will be disseminated through publications, conference presentations and reports.
Subject(s)
Caregivers , Patient Transfer , Humans , Aged , Ontario , Qualitative Research , HospitalsABSTRACT
INTRODUCTION: Older Canadians living with frailty are high users of healthcare services; however, the healthcare system is not well designed to meet the complex needs of many older adults. Older persons look to their primary care practitioners to assess their needs and coordinate their care. They may need care from a variety of providers and services, but often this care is not well coordinated. Older adults and their family caregivers are the experts in their own needs and preferences, but often do not have a chance to participate fully in treatment decisions or care planning. As a result, older adults may have health problems that are not properly assessed, managed or treated, resulting in poorer health outcomes and higher economic and social costs. We will be implementing enhanced primary healthcare approaches for older patients, including risk screening, patient engagement and shared decision making and care coordination. These interventions will be tailored to the needs and circumstances of the primary care study sites. In this article, we describe our study protocol for implementing and testing these approaches. METHODS AND ANALYSIS: Nine primary care sites in three Canadian provinces will participate in a multi-phase mixed methods study. In phase 1, baseline information will be collected through questionnaires and interviews with patients and healthcare providers (HCPs). In phase 2, HCPs and patients will be consulted to tailor the evidence-based interventions to site-specific needs and circumstances. In phase 3, sites will implement the tailored care model. Evaluation of the care model will include measures of patient and provider experience, a quality of life measure, qualitative interviews and economic evaluation. ETHICS AND DISSEMINATION: This study has received ethics clearance from the host academic institutions: University of Calgary (REB17-0617), University of Waterloo (ORE#22446) and Université Laval (#MP-13-2019-1500 and 2017-2018-12-MP). Results will be disseminated through traditional means, including peer-reviewed publications and conferences and through an extensive network of knowledge user partners. TRIAL REGISTRATION NUMBER: NCT03442426;Pre-results.
