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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)
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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 May 11, 2025.

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