Themes for evaluating the quality of initiatives to engage patients and family caregivers in decision-making in healthcare systems: a scoping review

Abstract

ObjectiveTo identify the key themes for evaluating the quality of initiatives to engage patients and family caregivers in decision-making across the organisation and system domains of healthcare systems.MethodsWe conducted a scoping review. Seven databases of journal articles were searched from their inception to June 2019. Eligible articles were literature reviews published in English and provided useful information for determining aspects of engaging patients and family caregivers in decision-making to evaluate. We extracted text under three predetermined categories: structure, process and outcomes that were adapted from the Donabedian conceptual framework. These excerpts were then independently open-coded among four researchers. The subsequent themes and their corresponding excerpts were summarised to provide a rich description of each theme.ResultsOf 7747 unique articles identified, 366 were potentially relevant, from which we selected the 42 literature reviews. 18 unique themes were identified across the three predetermined categories. There were six structure themes: engagement plan, level of engagement, time and timing of engagement, format and composition, commitment to support and environment. There were four process themes: objectives, engagement approach, communication and engagement activities. There were eight outcome themes: decision-making process, stakeholder relationship, capacity development, stakeholder experience, shape policy/service/programme, health status, healthcare quality, and cost-effectiveness.ConclusionsThe 18 themes and their descriptions provide a foundation for identifying constructs and selecting measures to evaluate the quality of initiatives for engaging patients and family caregivers in healthcare system decision-making within the organisation and system domains. The themes can be used to investigate the mechanisms through which relevant initiatives are effective and investigate their effectiveness.

Patient Engagement in Oncology Practice: A Qualitative Study on Patients’ and Nurses’ Perspectives

“…Among the strategies is the key involvement of the caregiver. In oncology and chronic diseases, the caregiver is an essential partner in the care pathway and can be a strategic ally for the healthcare team, as highlighted within the literature [ 38 , 39 ]. Caregiver engagement is seen as a crucial lever for the promotion of patient engagement, especially in situations where patient care is protracted over a long period of time; as a consequence, care in the person’s home environment becomes a value to be protected [ 40 , 41 , 42 , 43 ].…”

Patient engagement in the development and delivery of healthcare services: a systematic scoping review

“…To inform future research and practice, a scoping review was performed to systematically identify and map existing gaps in knowledge regarding the structure, process and outcome of PE. We used a PE-adapted version of Donabedian’s model to evaluate the quality of healthcare services to increase the understanding of current worldwide PE practices 11. This review will focus on PE structures (the characteristics of settings or contexts in which PE occurs), PE processes (what PE practices and mechanisms are actually performed) and outcomes (the consequences on healthcare services, stakeholder relationship and experiences as a consequence of PE practices).…”

Community engagement initiatives in primary health care to achieve universal health coverage: A realist synthesis of scoping review

“…Many studies in our review described different levels of community engagement, from passive and tokenistic participation to more active involvement on community empowerment. The impact of CE initiative in achieving stated objectives (e.g., improving service uptake, health outcome) was partially contingent on whether communities were engaged at the appropriate level of participation with adequate engagement time, duration, and frequency as well as appropriate timing [ 21 , 39 , 80 ]. In a national study conducted in New Zealand to examine the process of involving communities in PHC, various stakeholders clearly distinguished community participation from consultation.…”

“…Several studies reported that short-term success, long-term effectiveness, and sustainability of CE initiatives depends largely on adequate training of all stakeholders involved in delivering CE, including communities, staff, and service providers [ 40 , 76 ]. In addition, an engagement-capable environment that supports communities and removes engagement barriers–particularly for marginalised people and those with disability–is considered essential for the success of CE activities about the issues of equity in access to PHC services [ 80 ]. In many sub-Saharan African countries, community groups such as health committees played a crucial role in mobilising resources to support PHC delivery through various means including donations, organising community members to contribute in-kind (time, skills, raw materials etc), and lobbying local managers to retain health workers and support staff in their PHC facilities [ 16 ].…”

“…The extent to which the community is allowed to define priorities and set the objectives and agenda of engagement is one of the essential process aspects of CE initiatives. The literature reviewed consistently highlighted the importance of stakeholder collaboration–based on the shared values and vision–in developing the objectives and agenda for CE activities [ 21 , 25 , 39 , 80 , 81 ]. Among the most cited objectives for CE includes improving the level of general and specific PHC delivery, addressing healthcare access issues, particularly for disadvantaged people, and prevention and screening campaigns (e.g., HIV/AIDS, breast cancer screening) [ 21 , 24 , 25 , 36 , 38 , 44 ].…”