Aftercare for Organ Donor Families: A Content Analysis of Organ Procurement Organization Family Services and Educational Materials
J. Akhtar1, C. Sidoti1, S. Klitenic1, T. Storch2, E. Hughes2, C. Hagan3, A. Helman3, I. Johnson3, K. Vanterpool1, H. Sung1, L. Zeiser1, M. Levan1
1Johns Hopkins, Baltimore, MD, 2Taylor's Gift Foundation, Coppell, TX, 3Living Legacy Foundation, Baltimore, MD
Meeting: 2022 American Transplant Congress
Abstract number: 1613
Keywords: Donation
Topic: Clinical Science » Ethics » 22 - Psychosocial and Treatment Adherence
Session Information
Session Name: Psychosocial and Treatment Adherence
Session Type: Poster Abstract
Date: Tuesday, June 7, 2022
Session Time: 7:00pm-8:00pm
Presentation Time: 7:00pm-8:00pm
Location: Hynes Halls C & D
*Purpose: Following a sudden and tragic loss, organ donor families’ members experience grief, and may even develop prolonged grief disorder. All US organ procurement organizations (OPOs) provide family support and aftercare services for organ donor families, but the breadth and focus of services vary across OPOs. We assessed the scope and gaps of existing donor family services in the US and its territories.
*Methods: Family service offerings were identified through each OPOs website (n =57), (Table 1). We used qualitative content analysis to identify topics covered and delivery format; 11 categories were developed inductively based on common services offered by OPOs. The frequency of each service was reported and analyzed using descriptive statistics.
*Results: Categories of existing donor family services and educational materials included written materials, podcasts, blogs, social media, support groups, provider referrals (referring individuals to specific counselors), on-site counseling, counseling, and support services (providing websites and phone numbers to local counseling/support services), family/recipient connections, and celebratory and honorary events (Table 1). Of all services, celebratory and honorary events as well as written materials were universally provided by OPOs (100%). Quilts made in honor of donors were commonly provided by OPOs, in which the donor families can submit a quilt square commemorating their loved one. A third to nearly a half of OPOs offered donor family services such as ‘Social Media,’ ‘Blogs,’ ‘Videos’ and’ ‘Podcasts.’ Social media support services were often offered through Facebook groups to create a sense of community for donor families. Family/recipient connections (98%) and counseling recommendations (86%) were commonly offered, while provider referrals, support groups, and on-site counseling were offered by less than 20% of OPOs.
*Conclusions: Counseling and support services for organ donor families vary by OPO and can be improved. The development and implementation of evidence-based grief programs tailored to these families can improve quality of services to support donor families.
Table 1: Frequency of family services offered by organ procurement organizations
Donor Family Service | Frequency distribution |
Written materials | 100.00% (n = 57) |
Celebratory and honorary events | 100.00% (57) |
Family/Recipient connection | 98.25% (56) |
Counseling Recommendations | 85.96% (49) |
Social media | 47.37% (27) |
Blogs | 38.60% (22) |
Videos | 35.09% (20) |
Podcasts | 33.33% (19) |
Provider referrals | 15.79% (9) |
Support groups | 14.04% (8) |
On-site counseling | 8.77% (5) |
To cite this abstract in AMA style:
Akhtar J, Sidoti C, Klitenic S, Storch T, Hughes E, Hagan C, Helman A, Johnson I, Vanterpool K, Sung H, Zeiser L, Levan M. Aftercare for Organ Donor Families: A Content Analysis of Organ Procurement Organization Family Services and Educational Materials [abstract]. Am J Transplant. 2022; 22 (suppl 3). https://atcmeetingabstracts.com/abstract/aftercare-for-organ-donor-families-a-content-analysis-of-organ-procurement-organization-family-services-and-educational-materials/. Accessed November 21, 2024.« Back to 2022 American Transplant Congress