What do patients want? Expectations and perceptions of IVF clinic information and support regarding frozen embryo disposition.

OBJECTIVE: To describe frozen embryo holders' expectations and perceptions of IVF clinic information, support, and storage fees and their relevance to embryo disposition decision making. DESIGN: Qualitative interview study. SETTING: Three northern California IVF practices. PATIENT(S): One hundred six families (110 women and 74 men) with an average of six frozen embryos in storage for 5 years. INTERVENTION(S): Three in-depth interviews over 1 year. MAIN OUTCOME MEASURE(S): Thematic analysis of interview transcripts. RESULT(S): Although embryo holders expected that IVF clinics were under obligation to assist in the disposition decision and would be their main source of information, these expectations did not become manifest until years after embryo cryopreservation. Patients expressed a variety of preferences for the timing, format, and content of information and support, ranging from detailed written information to counselor/advocates that could provide logistical guidance and/or psychologic support. Embryo holders perceived an insufficiently defined infrastructure to facilitate donation to other couples, whereas donating to medical research was seen as less complicated and more likely to be encouraged and supported by physicians and clinics. Although increasing storage fees motivated disposition decision making, they could be interpreted as coercive and/or not reflective of actual clinic costs. CONCLUSION(S): Frozen embryo-holding patients' expectations of information and support to assist them with disposition decision making and embryo donation suggests that IVF clinics may benefit from a review of their frozen embryo counseling, storage, and disposition policies and procedures.

How couples who have undergone in vitro fertilization decide what to do with surplus frozen embryos.

In a qualitative interview study of 77 families with stored frozen embryos, we found that while embryo disposition decision making was influenced by individual life circumstances, embryo quantity/quality, personal values, embryo conceptualization, and clinic information, it was a stepwise process that could be represented as three sequential questions: (1) Will the embryos be used for additional attempts at conception? If not, (2) Will the embryos remain in storage? And if not, (3) Will the embryos be donated to other people or to science, or will they be destroyed? While almost two-thirds (63%) of participants kept their embryos in storage after 5 years, either passively through disagreement or indecision or actively to maintain embryo potential, avert feelings of loss, or as psychological or genetic "insurance," IVF clinic support and detailed information about options motivated families to make disposition decisions.

How parents whose children have been conceived with donor gametes make their disclosure decision: contexts, influences, and couple dynamics.

OBJECTIVE: To describe parents' disclosure decision-making process. DESIGN: In-depth ethnographic interviews. SETTING: Participants were recruited from 11 medical infertility practices and 1 sperm bank in Northern California. PATIENT(S): One hundred forty-one married couples who had conceived a child using donor gametes (62 with donor sperm, 79 with donor oocytes). INTERVENTION(S): Husbands and wives were interviewed together and separately. MAIN OUTCOME MEASURE(S): Thematic analysis of interview transcripts. RESULT(S): Ninety-five percent of couples came to a united disclosure decision, some "intuitively," but most after discussions influenced by the couples' local sociopolitical environment, professional opinion, counseling, religious and cultural background, family relationships, and individual personal, psychological, and ethical beliefs. Couples who were not initially in agreement ultimately came to a decision after one partner deferred to the wishes or opinions of the other. Deferral could reflect the result of a prior agreement, one partner's recognition of the other's experiential or emotional expertise, or direct persuasion. In disclosing couples, men frequently deferred to their wives, whereas, in nondisclosing couples, women always deferred to their husbands. CONCLUSION(S): Although the majority of couples were in initial agreement about disclosure, for many the disclosure decision was a complex, negotiated process reflecting a wide range of influences and contexts.

Strategies for disclosure: how parents approach telling their children that they were conceived with donor gametes.

OBJECTIVE: To describe how parents envision, plan, and enact disclosing to their children that they were conceived with donor gametes. DESIGN: In-depth ethnographic interviews. SETTING: Participants were recruited from 11 medical infertility practices and 1 sperm bank in Northern California. PATIENT(S): A total of 141 married couples who had conceived a child using donor gametes (62 with donor sperm and 79 with donor oocytes). INTERVENTION(S): Husbands and wives were interviewed together and separately. MAIN OUTCOME MEASURE(S): Thematic analysis of interview transcripts. RESULT(S): Disclosing parents predominantly subscribed to one of two disclosure strategies: the conviction that early disclosure is of paramount importance so that the child "always knows," or the belief that later disclosure is preferable after family routines have been established and the child has the maturity to understand biologic concepts and has developed a sense of discretion. No parent regretted disclosing, and many expressed relief. CONCLUSION(S): Parents choosing early disclosure were more at ease with the disclosure process, whereas parents choosing later disclosure reported greater uncertainty about how and when to disclose. Parents wished for more peer and/or professional support and guidance to assist them with disclosure, not only initially but continuing long after their children were born.