Dataset Information

Engaging Older Adults in Health Care Decision-Making: A Realist Synthesis.

ABSTRACT:

Background

Engagement in healthcare decision making has been recognized as an important, and often lacking, aspect of care, especially in the care of older adults who are major users of the healthcare system.

Objective

We aimed to conduct a review of available knowledge on engagement in healthcare decision making with a focus on older patients and their caregivers.

Methods

We conducted a realist synthesis focusing on strategies for engagement of older patients and their caregivers in healthcare decision making. The synthesis encompassed theoretical frameworks and both peer-reviewed and grey literature. Expert consultations included interviews (n = 2) with academics and group consultations (n = 3) with older adults and their caregivers. Abstracts that reported description, assessment, or evaluation of strategies for engagement of adult patients, families, or caregivers (i.e., that report on actual experiences of engagement) were included.

Results

The search generated 15,683 articles, 663 of which were pertinent to healthcare decision making. Theoretical and empirical work identified a range of strategies and levels of engagement of older patients and their families in healthcare decision making. The importance of communication emerged as a key recommendation for meaningful engagement among providers and patients and their caregivers. The principles developed in this study should be implemented with consideration of the context in which care is being provided.

Conclusions

We have developed a framework that promotes the engagement of patients and their caregivers as equal partners in healthcare decision making. Future research should implement and test the framework in various clinical settings.

SUBMITTER: Elliott J

PROVIDER: S-EPMC5021754 | biostudies-literature | 2016 Oct

REPOSITORIES: biostudies-literature

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Publications

Engaging Older Adults in Health Care Decision-Making: A Realist Synthesis.

Elliott Jacobi J McNeil Heather H Ashbourne Jessica J Huson Kelsey K Boscart Veronique V Stolee Paul P

The patient 20161001 5

<h4>Background</h4>Engagement in healthcare decision making has been recognized as an important, and often lacking, aspect of care, especially in the care of older adults who are major users of the healthcare system.<h4>Objective</h4>We aimed to conduct a review of available knowledge on engagement in healthcare decision making with a focus on older patients and their caregivers.<h4>Methods</h4>We conducted a realist synthesis focusing on strategies for engagement of older patients and their car ...[more]

PMID: 27048393

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Project description:BackgroundHealth care systems are increasingly moving towards more integrated approaches. Shared decision making (SDM) is central to these models but may be complicated by the need to negotiate and communicate decisions between multiple providers, as well as patients and their family carers; particularly for older people with complex needs. The aim of this review was to provide a context relevant understanding of how interventions to facilitate SDM might work for older people with multiple health and care needs, and how they might be applied in integrated care models.MethodsIterative, stakeholder driven, realist synthesis following RAMESES publication standards. It involved: 1) scoping literature and stakeholder interviews (n = 13) to develop initial programme theory/ies, 2) systematic searches for evidence to test and develop the theories, and 3) validation of programme theory/ies with stakeholders (n = 11). We searched PubMed, The Cochrane Library, Scopus, Google, Google Scholar, and undertook lateral searches. All types of evidence were included.ResultsWe included 88 papers; 29 focused on older people or people with complex needs. We identified four context-mechanism-outcome configurations that together provide an account of what needs to be in place for SDM to work for older people with complex needs. This includes: understanding and assessing patient and carer values and capacity to access and use care, organising systems to support and prioritise SDM, supporting and preparing patients and family carers to engage in SDM and a person-centred culture of which SDM is a part. Programmes likely to be successful in promoting SDM are those that allow older people to feel that they are respected and understood, and that engender confidence to engage in SDM.ConclusionsTo embed SDM in practice requires a radical shift from a biomedical focus to a more person-centred ethos. Service providers will need support to change their professional behaviour and to better organise and deliver services. Face to face interactions, permission and space to discuss options, and continuity of patient-professional relationships are key in supporting older people with complex needs to engage in SDM. Future research needs to focus on inter-professional approaches to SDM and how families and carers are involved.

Project description:BACKGROUND:Shared Decision-making (SDM), a medical decision-making model, was popularized in the late 1980s in reaction to then predominate paternalistic decision-making, aiming to better meet the needs of patients. Extensive research has been conducted internationally examining the benefits of SDM implementation; however, existing theory on how SDM works, for whom, in which circumstances, and why is limited. While literature has shown positive patient, health care provider, and system benefits (SDM outputs), further research is required to understand the nuances of this type of decision-making. As such, we set out to address: "In which situations, how, why, and for whom does SDM between patients and health care providers contribute to improved engagement in the Shared Decision-making process?" METHODS:To achieve our study goals we conducted a seven-step realist synthesis process, which included: (1) preliminary program theory development, (2) search strategy development, (3) selection and appraisal of literature in accordance with realist methodology, (4) data extraction, (5) identification of relevant formal theories, (6) data analysis and synthesis, and (7) formation of a revised program theory with the input of stakeholders. This process was done in accordance with RAMESES guidelines and publication standards for a realist synthesis. Expert consultations were also held to ensure consistency within the SDM literature. RESULTS:Through our realist synthesis, we developed a program theory of SDM which includes three contexts (pre-existing relationship, difficulty of decision, and system support), eight mechanism sets (anxiety, trust, perception of other party capacity, perception of time, self-efficacy, world view, perception of capacity to external support, and recognition of decision), and one outcome (engagement in SDM). CONCLUSIONS:As far as the authors of this paper are aware, this paper is the first to begin unpacking how SDM works, for whom, in which circumstances, and why. By examining key mechanism sets and exploring how they facilitate or inhibit SDM, we have produced a program theory that may assist health care professionals, policy makers, and patients. While further research is suggested to further unpack the concepts identified within this paper, this provides an initial understanding into the theory behind SDM. REGISTRATION:PROSPERO: CRD42017062609.

Project description:INTRODUCTION:How shared decision making (SDM) works with indigenous patient values and preferences is not well understood. Colonization has affected indigenous peoples' levels of trust with institutions, and their world view tends to be distinct from that of nonindigenous people. Building on a programme theory for SDM, the present research aims to refine the original programme theory to understand how the mechanisms of trust and world view might work differently for indigenous patients. DESIGN:We used a six-step iterative process for realist synthesis: preliminary programme theory development, search strategy development, selection and appraisal of literature, data extraction, data analysis and synthesis, and formation of a revised programme theory. DATA SOURCES:Searches were through Medline, CINAHL, and the University of Saskatchewan iPortal for grey literature. Medline and CINAHL searches included the University of Alberta Canada-wide indigenous peoples search filters. DATA SYNTHESIS:Following screening 731 references, 90 documents were included for data extraction (53 peer reviewed and 37 grey literature). Documents from countries with similar colonization experiences were included. RESULTS:A total of 518 context-mechanism-outcome (CMO) configurations were identified and synthesized into 21 CMOs for a revised programme theory. Demographics, indigenous world view, system and institutional support, language barriers, and the macro-context of discrimination and historical abuse provided the main contexts for the programme theory. These inspired mechanisms of reciprocal respect, perception of world view acceptance, and culturally appropriate knowledge translation. In turn, these mechanisms influenced the level of trust and anxiety experienced by indigenous patients. Trust and anxiety were both mechanisms and intermediate outcomes and determined the level of engagement in SDM. CONCLUSION:This realist synthesis provides clinicians and policymakers a deeper understanding of the complex configurations that influence indigenous patient engagement in SDM and offers possible avenues for improvement.

Project description:IMPORTANCE:Hospitalized older adults often lack decisional capacity, but outside of the intensive care unit and end-of-life care settings, little is known about the frequency of decision making by family members or other surrogates or its implications for hospital care. OBJECTIVE:To describe the scope of surrogate decision making, the hospital course, and outcomes for older adults. DESIGN, SETTING, AND PARTICIPANTS:Prospective, observational study conducted in medicine and medical intensive care unit services of 2 hospitals in 1 Midwestern city in 1083 hospitalized older adults identified by their physicians as requiring major medical decisions. MAIN OUTCOMES AND MEASURES:Clinical characteristics, hospital outcomes, nature of major medical decisions, and surrogate involvement. RESULTS:According to physician reports, at 48 hours of hospitalization, 47.4% (95% CI, 44.4%-50.4%) of older adults required at least some surrogate involvement, including 23.0% (20.6%-25.6%) with all decisions made by a surrogate. Among patients who required a surrogate for at least 1 decision within 48 hours, 57.2% required decisions about life-sustaining care (mostly addressing code status), 48.6% about procedures and operations, and 46.9% about discharge planning. Patients who needed a surrogate experienced a more complex hospital course with greater use of ventilators (2.5% of patients who made decisions and 13.2% of patients who required any surrogate decisions; P <?.001), artificial nutrition (1.7% of patients and 14.4% of surrogates; P <?.001), and length of stay (median, 6 days for patients and 7 days for surrogates; P <?.001). They were more likely to be discharged to an extended-care facility (21.2% with patient decisions and 40.9% with surrogate decisions; P <?.001) and had higher hospital mortality (0.0% patients and 5.9% surrogates; P <?.001). Most surrogates were daughters (58.9%), sons (25.0%), or spouses (20.6%). Overall, only 7.4% had a living will and 25.0% had a health care representative document in the medical record. CONCLUSIONS AND RELEVANCE:Surrogate decision making occurs for nearly half of hospitalized older adults and includes both complete decision making by the surrogate and joint decision making by the patient and surrogate. Surrogates commonly face a broad range of decisions in the intensive care unit and the hospital ward setting. Hospital functions should be redesigned to account for the large and growing role of surrogates, supporting them as they make health care decisions.

Project description:ObjectivesWhile patients' health priorities should inform healthcare, strategies for doing so are lacking for patients with multiple conditions. We describe challenges to, and strategies that support, patients' priorities-aligned decision-making.DesignParticipant observation qualitative study.SettingPrimary care and cardiology practices in Connecticut.ParticipantsTen primary care clinicians, five cardiologists, and the Patient Priorities implementation team (four geriatricians, physician expert in clinician training, behavioral medicine expert). The patients discussed were ? 66 years with >3 chronic conditions and ?10 medications or saw ? two specialists.ExposureFollowing initial training and experience in providing Patient Priorities Care, the clinicians and Patient Priorities implementation team participated in 21 case-based, group discussions (10 face-to-face;11 telephonic). Using emergent learning (i.e. learning which arises from interactions among the participants), participants discussed challenges, posed solutions, and worked together to determine how to align care options with the health priorities of 35 patients participating in the Patient Priorities Care pilot.Main outcomesChallenges to, and strategies for, aligning decision-making with patient's health priorities.ResultsCategories of challenges discussed among participants included uncertainty, complexity, and multiplicity of problems and treatments; difficulty switching to patients' priorities as the focus of decision-making; and differing perspectives between patients and clinicians, and among clinicians. Strategies identified to support patient priorities-aligned decision-making included starting with one thing that matters most to each patient; conducting serial trials of starting, stopping, or continuing interventions; focusing on function (i.e. achieving patient's desired activities) rather than eliminating symptoms; basing communications, decision-making, and effectiveness on patients' priorities not solely on diseases; and negotiating shared decisions when there are differences in perspectives.ConclusionsThe discrete set of challenges encountered and the implementable strategies identified suggest that patient priorities-aligned decision-making in the care of patients with multiple chronic conditions is feasible, albeit complicated. Findings require replication in additional settings and determination of their effect on patient outcomes.

Dataset Information

Engaging Older Adults in Health Care Decision-Making: A Realist Synthesis.

Background

Objective

Methods

Results

Conclusions

Publications

Engaging Older Adults in Health Care Decision-Making: A Realist Synthesis.

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