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

We synthesized knowledge on patient, family, and caregiver engagement in healthcare decision making using a realist synthesis approach. As there is currently no consensus on the best approach to conduct a knowledge synthesis, Kastner et al. [5] proposed a scoping review to identify the most appropriate knowledge synthesis method. Of the 25 approaches listed, the realist synthesis approach developed by Pawson et al. [6] and Greenhalgh et al. [7] is most appropriate for this study. Realist syntheses address limitations of more traditional approaches to systematic reviews and meta-analyses. Such traditional approaches address effectiveness, often narrowly defined, but do not consider why, for whom, and in what circumstances an intervention or policy works [8]. This method provided rich information and explanation that can guide real-world decision making.

The basic phases of a realist review are similar to those followed in a conventional Cochrane review but involve more sub-steps and may be overlapping and iterative rather than sequential [6]. Realist synthesis involves identifying a theoretically based framework (“initial rough theories” [9]), which is then populated with evidence that is used to enrich and refine the theory. The refined theory then becomes the basis for practice and policy recommendations. The search methodology was informed by the framework for realist syntheses put forward by Wong et al. [10].

The processes of scope clarification, stakeholder involvement, systematic search and review, and development/dissemination of recommendations are consistent with accepted practice for creation of best practice guidelines [11]. The synthesis encompassed peer-reviewed and grey literature; conceptual/theoretical as well as empirical work; research conducted using qualitative, quantitative, and mixed methods; and expert opinion, including the opinions of seniors, older patients, and their social support networks. The realist synthesis comprised the five phases described below and illustrated in Table 1. A more detailed description of the methods can be found in the protocol paper by Stolee et al. [12].

Information gathered through key informant and focus group interviews helped to narrow the grey literature search, key concepts, and words, and assisted in the identification of key engagement frameworks.

The informants suggested one commonly used framework in the area of patient and citizen engagement, the Spectrum of Engagement [19]. They also emphasized the importance of the context,

“it’s not that you can take the framework and apply it across the whole spectrum of care for that particular group, it’s based on that particular situation that is impacting them for the moment, and it might be a very specific kind of approach or strategy, very specific …” (key informant).

As strategies emerge through the literature search, the specific situation for which that strategy can be applied must be considered.

Using data from the grey literature and key informant and focus group interviews, eight frameworks were selected for further review: Person-Centered Practice Conceptual Framework [20]; Shared Decision Making [20]; Ladder of Engagement [21]; Spectrum of Participation [19, 22]; Community Engagement Model [23]; and the Eight Dimensions of Patient-Centered Care [24]. After each framework was reviewed in detail with members of Patients Canada, the participants suggested that the Spectrum of Participation [22] and Picker’s Eight Dimensions of Patient-Centered Care [24] would be the most appropriate “initial rough theory” frameworks. The Spectrum of Participation provides a framework of different levels of engagement; inform, consult, involve, collaborate, and empower. The Eight Dimensions of Patient-Centered Care provide a list of elements that should be considered when treating a patient, including patient preferences, emotional support, physical comfort, information and education, continuity and transition, coordination of care, access to care and family and friends. One participant said, I can understand this model [Spectrum of Participation], which is important. For a diagram to work, it should be intuitively comprehensible. Participants preferred the spectrum illustrated as a circle rather than as a linear model, as it most depicts reality; patients and families should be able to move between any levels of engagement at any time. The ‘Preferences’, ‘Emotional Support’, and ‘Access to Care’ components of the Eight Dimensions of Patient-Centered Care were very important to participants. However, there was concern that this particular model did not reference the importance of partnerships or collaborations and did not consider the skills and knowledge of the patient or the provider to engage in meaningful discussions.

Figure 1 shows the number of studies included at each stage of the review. The search yielded a total of 15,683 articles once duplicates were removed. The articles first underwent a title and abstract review in which 10,467 articles were excluded; 562 articles focused on engagement in research and healthcare planning, and these were set aside for another realist review conducted by a member of the team. Articles focusing on cognitive impairment were also set aside because it was hypothesized that engagement techniques for this population would be unique. The remaining 663 (652 English and 11 French) articles underwent a full-text review. Reviewers (independently reviewed the remaining articles, sorting them into three categories: “Exclude,” “Theory,” or “Evidence/Intervention”. One reviewer was responsible for the French language articles. The reviewers met numerous times to discuss the process and ensure it remained consistent.

Of the 652 English language articles, 281 articles focused on theory and were set aside. The remaining 371, considered to have sufficient evidence, were included for data abstraction. Of the 11 French articles, two focused on theory and nine were included in the final sample to be abstracted. In total, 213 articles (208 English, 5 French) were abstracted and coded before saturation was reached. In total, 36 % (77/213) of the studies were conducted in the USA, 19 % (41/213) were conducted in the UK, and 10 % (22/213) were conducted in Canada. The articles identified research conducted across different settings, including community care (32 %, 68/213), primary care (17 %, 37/213), and hospital (20 %, 42/213). Methods used in each study varied. Of the articles analyzed, 15 % (33/213) focused on older adults.

Components of both the Spectrum of Participation [22], and the Eight Dimensions of Patient-Centered Care framework [24] were included on the data abstraction form (see the Electronic Supplementary Material for an example of the data abstraction form). Of the 213 articles abstracted, the majority of the studies discussed aspects related to patient preferences (80 %, 170/213) or information and education (67 %, 143/213). Only 15 % (32/213) discussed friends and family. In terms of level of engagement, 62 % (133/213) discussed engagement at the level of involving patients, but only 11 % (23/213) discussed empowering patients in healthcare decision making.

A number of “codes” emerged from a thorough line-by-line analysis [13] of the data abstraction table. Example codes include trust, respect, shared decision making, power dynamics, communication breakdown, expectations, involving family, wait time, and system complexities. The research team met frequently to discuss the codes and subsequent emerging themes. Through the analysis process, in collaborations with stakeholders, the results of this project indicated that, regardless of the level of engagement (as indicated by the Spectrum of Participation [22]), two levels need to be considered when engaging older adults in healthcare decision making. These levels include the individual actors (patients, providers, social support systems) and the broader health system (health sectors, environment, time, complexity). Following the emergent analysis technique, a more deductive coding approach using The Eight Dimensions of Patient-Centered Care [24] guided further analysis. This analysis both supported and countered elements of the candidate frameworks. We engaged stakeholders to review the resulting program theory and gain further insight from older adults into how to understand the context and mechanisms necessary to achieve outcomes of meaningful engagement. Figure 2a–c illustrate the theoretical relationship and underpinning of CMO examples that emerged from the literature review to engage older adults in healthcare decision making. The CMO examples a specific context (C), the underlying mechanism (M), and the subsequent outcome (O).

In the context of a doctor’s appointment, the patients’ past experience (positive or negative) (C) can affect the interaction they have with the healthcare provider. The mechanism of building trust (M) between the patient and provider is needed to develop a meaningful relationship (O) where the patient feels engaged in the decision making. This example is illustrated in Fig. 2a.

The realist synthesis of 213 abstracted and coded articles, and consultations with older adults and experts, produced a number of key findings. First, engagement in healthcare decision making is complex, and the specific strategies used will vary depending on the patient, setting, and situation; however, the key principles discussed in the framework above remain consistent. The skills and knowledge of the patient, their social support network, and the healthcare provider will influence the patients’ desired level of engagement. Some patients have limited or no understanding that they can participate in decision making with care providers. Patients and their social support networks should be educated on what engagement is and what the different levels of engagement are [44, 48, 58]. It is up to the patient to decide how much they want to participate in healthcare decision making; they should be encouraged by healthcare providers and supported by the system to do so [34, 37, 45]. Second, communication between providers, patients, and the social support network is key to the development of an open, honest, and trusting relationship, which in turn impacts the coordination of care [47]. Third, within a meaningful relationship, patients and their social support network will need to continuously evaluate their level of engagement and recognize that this level is fluid and evolving [51]. Providers, patients, and social support networks will gain knowledge, skills, and experiences as time passes, which may influence their desired engagement level. Therefore, in collaboration with healthcare providers, levels of engagement should be discussed and partnerships adjusted periodically. The idea of recognizing different levels of engagement has been supported by others, such as Facey et al. [59].

The focus of the realist review aimed to understand the engagement of older adults in decision making. Only a small number of articles focused specifically on this population. We found no significant difference in the literature that would lend itself to different engagement strategies. Our expectation is that our mechanisms for engagement would be the same for older adults and adults. The consultations with older adults were helpful to verify the findings from the literature and ensure that the engagement strategies were appropriate. However, our discussions with older adults did identify that consideration of family and friends is important. Only a small number of the abstracted articles discussed the aspect of family and friends [37, 40‐43]. However, the consultations conducted for this realist review, and other research our group has conducted [60, 61], indicated support for the inclusion of caregivers as important members of the circle of care. Thus, the inclusion of caregivers became a central component of the program theory.

As illustrated in Fig. 2a–c, the components of the framework used to understand engagement have evolved as a result of the literature search and consultation with stakeholders. Many of the dimensions in the Eight Dimensions of Patient-Centered Care [24] are elements within the components of the program theory. Information about the patient, social support network, and the provider is imperative to the building of a positive interaction that supports meaningful engagement. A strong relationship (interaction between patients, social support networks, and providers), supports the occurrence of more seamless coordination of care, access to services, and continuity of care across the complex system. When the frameworks were chosen in phase 1 of the study, participants commented on the absence of partnership or collaboration in the Eight Dimensions of Patient-Centered Care [24]. The importance of the relationship between patients, providers, social support network, and the context emerged through the review and consultation process, and it is the central element of the newly developed engagement framework. However, the elements of the candidate theory are evident in each level of the program theory. For instance, understanding patient preferences becomes an important consideration when looking at the patient at the individual level. Patient preferences will influence how the patient–provider–social support interaction occurs, thus resulting in different outcomes. Family and friends is one of the eight elements in the patient-centered care model and is also important in the new program theory. Social support networks play a large role in the care of patients, especially older adults.

The Spectrum of Participation [22], was found to be no longer important as its own framework, but rather to inform the idea of levels of participation/engagement, which need to be an ongoing consideration during the care process. The desired level of engagement should be considered at the patient level and will affect the mechanism and subsequent outcome.

By using a realist synthesis method, the review has begun to explain, how, why, and the context in which patient engagement occurs. A realist review is subjective and interpretive in nature, and although our methods and steps have been documented, other researchers reviewing the same literature may arrive at different conclusions depending on the theory used and how the data are interpreted [17].

At first, we perceived the number of articles generated through our search to be unmanageable; however, this provided a range of studies (methods, context, and populations) through which to understand the process of engagement. The amount of literature focused on engaging older adults was also limited, but the workshops held with Patients Canada, as well as the focus group with SHARP members, contributed to, and verified, the knowledge learned through the literature review.

We also recognize that a large number of theories and frameworks exist; however, information from our key informants and the focus of our search directed us to the candidate theories chosen for this review. Participants in our consultations provided feedback on the theories, a process unique to a realist synthesis.

We have reported on all of the items in the RAMESES (Realist And Meta-narrative Evidence Syntheses: Evolving Standards) publication standards [10], except for iterative searching. This review obtained a large sample of literature for which we felt we had sufficient data.

This review provides a better understanding of how meaningful engagement can be achieved and is grounded in literature searches (peer-reviewed and grey literature) and consultations with older adults, patients, and caregivers. The examples outlined throughout the result sections are meant as a guide. Given the specific situation, a number of processes can occur that influence meaningful engagement. The purpose of this paper is not to be prescriptive, but rather to give examples of different processes that can occur in different situations that may lead to meaningful engagement. The process will depend on the extent to which the patient (and social support network) wishes to be involved in decision making (Spectrum of Engagement) and their knowledge and skills (Individual Level). An interaction will then occur at the individual level or broader system level in hopes of achieving meaningful engagement.