Patient engagement strategies for adults with chronic conditions: an evidence map.

BACKGROUND: Patient and family engagement (PFE) has been defined as a partnership between patients, families, and health care providers to achieve positive health care outcomes. There is evidence that PFE is critical to improving outcomes. We sought to systematically identify and map the evidence on PFE strategies for adults with chronic conditions and identify areas needing more research. METHODS: We searched PubMed, CINAHL, EMBASE, and Cochrane, January 2015 to September 2021 for systematic reviews on strategies for engaging patients with chronic conditions and their caregivers. From each review, we abstracted search dates, number and type of studies, populations, interventions, and outcomes. PFE strategies were categorized into direct patient care, health system, and community-policy level strategies. We found few systematic reviews on strategies at the health system, and none at the community-policy level. In view of this, we also searched for original studies that focused on PFE strategies at those two levels and reviewed the PFE strategies used and study findings. RESULTS: We found 131 reviews of direct patient care strategies, 5 reviews of health system strategies, and no reviews of community-policy strategies. Four original studies addressed PFE at the health system or community-policy levels. Most direct patient care reviews focused on self-management support (SMS) (n = 85) and shared decision-making (SDM) (n = 43). Forty-nine reviews reported positive effects, 35 reported potential benefits, 37 reported unclear benefits, and 4 reported no benefits. Health system level strategies mainly involved patients and caregivers serving on advisory councils. PFE strategies with the strongest evidence focused on SMS particularly for patients with diabetes. Many SDM reviews reported potential benefits especially for patients with cancer. DISCUSSION: Much more evidence exists on the effects of direct patient care strategies on PFE than on the effects of health system or community-policy strategies. Most reviews indicated that direct patient care strategies had positive effects or potential benefits. A limitation of this evidence map is that due to its focus on reviews, which were plentiful, it did not capture details of individual interventions. Nevertheless, this evidence map should help to focus attention on gaps that require more research in efforts to improve PFE.

Qualitative Investigation of Health Information Resources for Caregivers and Individuals Living With Spinal Cord Injury.

Objectives: To identify the information networks of caregivers and individuals with spinal cord injury (SCI) and how the health information is accessed and used. Methods: For this qualitative study, participants from the United States were recruited through hospital listservs, websites, social media, and word of mouth to participate in a phone interview. Fourteen individuals living with a traumatic SCI and 18 caregivers of individuals living with a traumatic SCI were interviewed using a semi-structured interview guide. The interviews were transcribed verbatim, coded using NVivo, and analyzed using qualitative thematic methods. Results: Participants reported that medical resources such as SCI specialists were considered the most reliable sources, but due to accessibility barriers the Internet was used the most. The Internet and social resources, such as online and in-person support groups, provided beneficial content information and emotional support, but they posed credibility concerns and left participants feeling unsure of reliability. Information gaps such as lack of education on basic care practices during the transition from acute to chronic care were identified by the participants. Conclusion: Because SCI is an overwhelming experience, it is difficult for patients to retain information in the initial acute care phase, leading to gaps in knowledge about long-term care. Patients are concerned about the reliability of online sources of information; therefore, there is a need for new methods of SCI information dissemination. Potentially, using primary care providers as conduits for information distribution might improve access to reliable long-term SCI information for caregivers and patients.