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

Judith B Vick; Jennifer L Wolff

doi:10.1111/1475-6773.13857

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

Health Serv Res. 2021 Oct;56 Suppl 1(Suppl 1):990-1005. doi: 10.1111/1475-6773.13857. Epub 2021 Oct 4.

Authors

Judith B Vick^{1

2}, Jennifer L Wolff^{1

2}

Affiliations

¹ Johns Hopkins University School of Medicine, Department of Internal Medicine, Baltimore, Maryland, USA.
² Johns Hopkins Bloomberg School of Public Health, Department of Health Policy and Management, Baltimore, Maryland, USA.

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.

Keywords: caregivers; choice behavior; delivery of health care; multiple chronic conditions; patient participation; review; self-management.

Publication types

Systematic Review

MeSH terms

Adult
Aged
Aged, 80 and over
Caregivers / psychology*
Delivery of Health Care / standards*
Family / psychology*
Female
Humans
Male
Middle Aged
Multiple Chronic Conditions / therapy*
Patient Participation / psychology*
Point-of-Care Systems / standards*
Practice Guidelines as Topic
Self-Management / psychology*
United States