Evaluation of first-person storytelling on changing health-related attitudes, knowledge, behaviors, and outcomes: A scoping review
PATIENT EDUCATION AND COUNSELING
2020; 103 (10): 1922–34
First-person storytelling (FPS) has the potential to engage patients in changing behavior differently than didactic education. We assessed the prevalence of FPS in health education interventions; whether published FPS research has shown improvements in attitudinal, knowledge, behavioral, or clinical outcomes; and whether randomized controlled trials (RCTs) including FPS have shown more effectiveness than non-FPS interventions.A scoping review of FPS studies published before October 2019 in five medical databases was conducted.22 out of 10,363 identified studies met eligibility criteria. FPS has been studied primarily in cancer, diabetes, and hypertension. Of the 12 RCTs, compared to controls, patients receiving FPS interventions improved attitudes (N = 6 studies) and knowledge (N = 1), improved health behaviors like quitting smoking (N = 6), and improved clinical outcomes like lowering A1C levels (N = 3). Of the 10 non-RCT studies, compared to baseline assessments, patients who received FPS interventions had improved knowledge (N = 1), attitudes (N = 3), clinical outcomes (N = 4), and improved health behaviors (N = 7).While rarely used, FPS interventions can improve patient health attitudes and outcomes. Future research should expand FPS to new health areas and determine best practices for developing FPS interventions.FPS may be particularly effective with low income patients and racial/ethnic minorities.
View details for DOI 10.1016/j.pec.2020.04.014
View details for Web of Science ID 000572849700007
View details for PubMedID 32359877
- Why Policy Changes May Be Necessary but Not Sufficient in Overcoming Disparities KIDNEY INTERNATIONAL REPORTS 2020; 5 (9): 1385–86
Amplifying the Patient Voice: Key Priorities and Opportunities for Improved Transplant and Living Donor Advocacy and Outcomes During COVID-19 and Beyond.
Current transplantation reports
To define patient advocacy and engagement for modern transplant and living donation care, particularly in light of the COVID-19 pandemic, describe the patient experience when transplant advocacy and engagement are optimized, and recommend opportunities for advocacy within three key areas: (1) including the patient voice in healthcare decisions and drug development, (2) access to the best evidence-based treatments and informed decision-making, and (3) present and future care innovations and policies.There are many avenues for transplant and living donation advocacy and engagement at the patient, provider, family, system, community, and policy levels. Key recommendations include the following: (1) simplifying education to be health literate, written at the appropriate reading level, culturally sensitive, and available in multiple languages and across many delivery platforms, (2) inviting transplant patients and donors to the conversation through advisory panels, consensus conferences, and new mediums like digital storytelling and patient-reported outcomes (PROs), (3) training all members of the health team to understand their role as advocates, and (4) advancing policies and programs that support the financial neutrality of living donation, and support recipients with the cost of immunosuppressive drugs. Key recommendations specific to the COVID-19 pandemic include providing up-to-date, health literate, concise information about preventing COVID-19 and accessing care including telehealth.Enhancing advocacy and engagement for transplant patients and donors along the pre-to-post transplant/donation continuum can improve clinical outcomes and quality of life generally, and more so, in light of the COVID-19 pandemic.
View details for DOI 10.1007/s40472-020-00295-x
View details for PubMedID 32904875
View details for PubMedCentralID PMC7462355
Recommendations for Systematizing Transplant Education Within a Care Delivery System for Patients With Chronic Kidney Disease Stages 3 to 5
PROGRESS IN TRANSPLANTATION
2020; 30 (2): 76–87
Early tailored transplant education could help patients make informed transplant choices.We interviewed 40 patients with chronic kidney disease (CKD) stages 3 to 5, 13 support persons, and 10 providers at Kaiser Permanente Southern California to understand: (1) barriers to transplant education and (2) transplant educational preferences and recommendations based on CKD stage and primary language spoken.A grounded theory analysis identified central themes related to transplant education barriers, preferences, and recommendations.Barriers included confusion about diagnosis and when transplant may be necessary, concerns about transplant risks, families' lack of transplant knowledge, financial burdens, transportation and scheduling, and the emotional overload of chronic illness. Hispanic and Spanish-speaking participants reported difficulty in understanding transplant education and medical mistrust. Recommendations included providing general education, earlier introduction to transplant, wait-listing information, transplant education for support persons, living donation education for patients and potential donors, opportunities to meet living donors and kidney recipients, information on the benefits of transplant, recovery, and available financial resources, flexible class scheduling, online and print resources, and more provider follow-up. Spanish-speaking and Hispanic participants recommended using bilingual educators, print, video, and online resources in Spanish, and culturally responsive education. Patients with CKD stages 3 to 4 wanted information on slowing disease progression and avoiding transplant.Increasing access to culturally responsive transplant education in multiple languages, pairing appropriate content to the disease stage, and increasing system-wide follow-up as the disease progresses might help patients make more informed choices about transplant.
View details for DOI 10.1177/1526924820913520
View details for Web of Science ID 000523518400001
View details for PubMedID 32238045
View details for PubMedCentralID PMC7430160
A Digital Library for Increasing Awareness About Living Donor Kidney Transplants: Formative Study
JMIR: Formative Research
View details for DOI 10.2196/17441
Storytelling to Inspire Dialysis Patients to Learn about Living Donor Kidney Transplant
View details for DOI 10.1159/000512651