TY - JOUR
T1 - Leaving a Legacy
T2 - Allied Health Professionals’ Perceptions of Fertility Preservation and Posthumous Reproduction for Adolescent and Young Adults with a Poor Cancer Prognosis
AU - Barrett, Francesca
AU - Sampson, Amani
AU - Campo-Engelstein, Lisa
AU - Caplan, Arthur
AU - Vadaparampil, Susan T.
AU - Quinn, Gwendolyn P.
N1 - Publisher Copyright:
© Mary Ann Liebert, Inc.
PY - 2024/2/1
Y1 - 2024/2/1
N2 - Purpose: To explore Allied Health Professionals’ (AHPs) experiences with and perceptions of posthumous assisted reproduction (PAR) among adolescent and young adults (AYA, ages 15–39) with a poor cancer prognosis. Methods: We conducted a qualitative analysis of video-based 90-minute focus groups (FGs) of AHPs who participated in the Enriching Communication Skills for Health Professionals in Oncofertility (ECHO) training program from May to August 2021. Moderator-facilitated discussions were guided by topics related to experiences around discussions and utilization of PAR among AYA with a poor cancer prognosis. Thematic analysis was conducted using the constant comparison method. Results: Forty-three AHPs participated in one of seven FGs. Three themes emerged: (1) PAR as palliative care: preserving patient’s legacy for their partner, siblings, and parents; (2) ethical and legal considerations for balancing patient’s time-sensitive needs; and (3) barriers AHPs encounter navigating complex dynamics of care in this population. Subthemes included an emphasis on patient autonomy, a multidisciplinary approach to counseling, early initiation of fertility discussions continuing over time, documenting reproductive desires, and concerns for family and offspring after patient death. Conclusions: AHPs desired timely conversations on reproductive legacy and family planning. In the absence of institutional policies, training, and resources, AHPs emphasized feeling ill-equipped to navigate the complex dynamics between patients, families, and colleagues. The development of transparent institutional policies, implementation of multidisciplinary care teams, and oversight with ethics committees may improve the provision of reproductive health care and/or end-of-life care for AYA with a poor cancer prognosis and their families.
AB - Purpose: To explore Allied Health Professionals’ (AHPs) experiences with and perceptions of posthumous assisted reproduction (PAR) among adolescent and young adults (AYA, ages 15–39) with a poor cancer prognosis. Methods: We conducted a qualitative analysis of video-based 90-minute focus groups (FGs) of AHPs who participated in the Enriching Communication Skills for Health Professionals in Oncofertility (ECHO) training program from May to August 2021. Moderator-facilitated discussions were guided by topics related to experiences around discussions and utilization of PAR among AYA with a poor cancer prognosis. Thematic analysis was conducted using the constant comparison method. Results: Forty-three AHPs participated in one of seven FGs. Three themes emerged: (1) PAR as palliative care: preserving patient’s legacy for their partner, siblings, and parents; (2) ethical and legal considerations for balancing patient’s time-sensitive needs; and (3) barriers AHPs encounter navigating complex dynamics of care in this population. Subthemes included an emphasis on patient autonomy, a multidisciplinary approach to counseling, early initiation of fertility discussions continuing over time, documenting reproductive desires, and concerns for family and offspring after patient death. Conclusions: AHPs desired timely conversations on reproductive legacy and family planning. In the absence of institutional policies, training, and resources, AHPs emphasized feeling ill-equipped to navigate the complex dynamics between patients, families, and colleagues. The development of transparent institutional policies, implementation of multidisciplinary care teams, and oversight with ethics committees may improve the provision of reproductive health care and/or end-of-life care for AYA with a poor cancer prognosis and their families.
KW - Allied Health Professionals
KW - adolescent and young adults
KW - fertility preservation
KW - oncofertility
KW - posthumous assisted reproduction
UR - http://www.scopus.com/inward/record.url?scp=85187198679&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=85187198679&partnerID=8YFLogxK
U2 - 10.1089/jayao.2022.0184
DO - 10.1089/jayao.2022.0184
M3 - Article
C2 - 37294937
AN - SCOPUS:85187198679
SN - 2156-5333
VL - 13
SP - 156
EP - 161
JO - Journal of Adolescent and Young Adult Oncology
JF - Journal of Adolescent and Young Adult Oncology
IS - 1
ER -