Aftercare for organ donor families: a content analysis of organ procurement organization family services and educational materials
Carolyn Sidoti4,5, Jasmine Akhtar1, Samantha Klitenic1, Tara Storch3, Elizabeth Hughes3, Caroline Hagan2, Amber Helman2, Ieesha Johnson2, Karen Vanterpool1, Hannah Sung1, Laura Zeiser 1, Macey Levan4,5.
1Department of Surgery, Johns Hopkins, Baltimore, MD, United States; 2Family Services, Living Legacy Foundation of Maryland, Baltimore, MD, United States; 3Taylors Gift Foundation , Coppell, TX, United States; 4NYU Grossman School of Medicine, New York, NY, United States; 5NYU Langone Health , New York, NY, United States
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.
Conclusion: 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.
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