Quality of patient, family, caregiver and public engagement in decision-making in healthcare systems: a scoping review protocol

Abstract

IntroductionTo advance person- and family-centred healthcare, government initiatives have supported the engagement of patients and family caregivers in decision-making in healthcare systems. There is, however, no consensus on how to define success for such initiatives. This scoping review aims to identify the key elements for defining the quality of patient and family caregiver engagement in decision-making across the engagement domains (individual, community/organisation, system) of British Columbia’s healthcare system. We will use those elements to develop a conceptual evaluation framework.Methods and analysisThis scoping review follows Arskey and O’Malley’s methodology. (1) The research question was identified through team discussions. (2) Articles for data source will be identified using a librarian-informed search strategy for seven bibliographic databases as well as grey literature sources. (3) Selected articles will be relevant to the evaluation of patient and family caregiver engagement in healthcare systems. (4) Two researchers will independently extract data into predefined and emerging categories. (5) The researchers will reconcile and organise the identified elements. The research team’s collective perspective will then refine the elements, and select, interpret and summarise the results. (6) Persons from key stakeholder groups will be consulted to refine the emergent conceptual framework.Ethics and disseminationWe will seek ethics approval for the stakeholder consultation. This study follows an integrated knowledge translation approach. The results will inform evaluation of the Patients as Partners Initiative of the British Columbia Ministry of Health, and will be disseminated as a scientific article, a research brief, and presentations at conferences and stakeholder meetings.

A Canadian model for providing high-quality, timely and relevant evidence to meet health system decision-maker needs: the SPOR Evidence Alliance

“…For example, the British Columbia Ministry of Health requested a systematic review in 2019 to identify key indicators of successful patient and family caregiver engagement within their provincial health care system (Hamilton et al 2019). A post-doctoral research fellow led this work with oversight and guidance from a senior researcher and in collaboration with a family caregiver as co-researcher.…”

Fatores socioculturais que contribuem para a qualidade de vida de cuidadores familiares de adultos dependentes de cuidados crônicos

“…28 A maioria dos participantes referiu a má qualidade do sono em decorrência do cuidado contínuo do familiar dependente de cuidados, o que exige um estado de alerta prolongado, além A necessidade de políticas e regulamentos governamentais para apoiar as famílias Diante das repercussões intersetoriais causadas pela sobrecarga de cuidar, é necessário que gestores e formuladores de políticas se atentem para melhorias no apoio aos cuidadores e suas famílias. 30 Programas que visem à capacitação para as atividades de cuidado seriam importantes, pois os cuidadores deste estudo que receberam algum tipo de capacitação expressaram satisfação e sentimento de competência em cuidar de seu familiar dependente de cuidados. Esse achado coincide com outro estudo que constatou que treinamento e orientação resultaram em maior otimismo e competência de resolução de problemas entre os cuidadores.…”

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

“…In this paper, 'patients and family caregivers' simply describes the many categories of individuals and groups served by healthcare systems. 10 In a 2009 scoping review on public engagement in healthcare priority setting and resource allocation, Mitton et al noted that engagement exercises are rarely evaluated. 11 The Manafò et al scoping review a decade later, likewise, noted that limited evaluation has hindered patient and public engagement in decision-making exercises.…”

“…19 We revised our published review protocol in an iterative process to refine the scope of our research question. 10 Scoping reviews do not require ethics approval. 17 18 Stage 1: identified the research questions Our question remained unchanged from our published protocol: 'What key elements define the quality of patient, family, caregiver, and public engagement in decisionmaking in healthcare systems for use in the evaluation of a provincial engagement initiative?'…”

“…17 18 Stage 1: identified the research questions Our question remained unchanged from our published protocol: 'What key elements define the quality of patient, family, caregiver, and public engagement in decisionmaking in healthcare systems for use in the evaluation of a provincial engagement initiative?' 10 The key elements were framed as themes for evaluation. In contrast to the published protocol, we focused on engagement within the organisation and system domains and excluded individual domain engagement.…”