A scoping review of person and family engagement in the context of multiple chronic conditions

Abstract

Objective To review definitions, concepts, and evidence regarding person and family engagement for persons with multiple chronic conditions (MCCs) in order to identify opportunities to advance the field. Data Source Ovid MEDLINE. Study Design We performed a two‐step process as follows: (1) a critical review of conceptual models of engagement to identify key concepts most pertinent to engagement among persons with MCC as a “launch pad” to our scoping review and (2) a scoping review of reviews of engagement for persons living with MCC. Data Collection/Extraction Methods First, we critically reviewed six models of engagement. Second, our scoping review identified 1297 citations, with 67 articles meeting criteria for inclusion. Of these, we focused on reviews, of which there were nine titles/abstracts retained for full‐text consideration. Six full‐text reviews were included in the final analysis. The purpose, review type, population, number/type of included studies, theoretical framework, and findings of each study were extracted and analyzed thematically. Principal Findings Conceptual models of engagement differ with respect to areas of emphasis (e.g., systems or clinical encounters) as well as attention to vulnerable populations, involvement of family, consideration of cost–benefit trade‐offs, and attention to outcomes that matter most. Our scoping review of reviews identified just one article explicitly focused on engagement interventions for those with MCC. Other reviews examined elements of self‐management and involvement in decision making, conceptually related to engagement without explicit use of the word. We find that existing evidence has predominantly described individual‐level strategies rather than targeting organizations, systems, or policies. Barriers to engagement are not well described nor are potential downsides to engagement. Family engagement is rarely considered. Conclusions Promising areas of future work include attention to barriers to engagement including trust, goal‐based care, the design of structural changes to care delivery, trade‐offs between benefits and costs, and family engagement.

Comorbidity: From a Confounder in Longitudinal Clinical Research to the Main Issue in Population Management

“…This is the challenge of comorbidity in this decade. Most agree that patient activation, empowerment and engagement, that is grounded in the realities of an individual's context and support system, are key to improving health in patients with significant comorbidity [90][91][92][93]. Average results from RCTs cannot be applied to patients with high comorbidity because of the tremendous heterogeneity of the patients [94].…”

Patient engagement in system redesign teams: a process of social identity

“…Our study extends this work by examining the relationship between perceptions, behaviors and contributions, in order to better understand how patients' role in a team can change over time, allowing for novel insights as to how teams can engage patients in efforts to improve health-care delivery and avoid tokenizing the patient perspective (Ocloo and Matthews, 2016). Additionally, prior work has focused on individual-level strategies to enhance patient engagement, without examination of barriers (Vick and Wolff, 2021); our findings expound on the barriers of patient engagement that can emerge from perceptions and behaviors of team members and patients.…”

“…Prior research describes patients sharing experiences, identifying improvement priorities and helping develop solutions (Boaz et al, 2016). However, processes that allow patients to assume different roles at different times to best achieve team outcomes remain underexplored, and there is a need to go beyond the identification of factors that can influence patient engagement to the mechanisms and pathways that can lead to changes in the patient's role (Carman et al, 2013;Alidina et al, 2021;Vick and Wolff, 2021). This means that teams that would like to spur higher levels of patient involvement have little guidance as to how they might accomplish this goal.…”

Healthcare professional perspectives on barriers and enablers to falls prevention education: A qualitative study

“…In line with participant views, group education [ 81 , 82 ], interactive education [ 83 ], and encouraging self-reflection [ 84 ] have been found to improve engagement and reinforce learning. Involving families when delivering education can also lead to better patient outcomes [ 85 ]. Findings about the delivery of education are a key determinant of the success of falls prevention programs in hospital [ 4 ].…”