Objective: To examine the experience of low-income, African-American parents surrounding perinatal loss and to describe how other life stressors influenced the parents' responses and caring needs.Design: Descriptive, using a phenomenologic approach.Setting: All data were collected in person. Interviews were held in parents' homes or, at the request of three parents, in an office in the university between 5 and 21 weeks after the loss.Participants: A total of 23 parents (17 mothers and 6 of their partners) were interviewed following a perinatal loss due to pregnancy (16 weeks gestation or later) or a neonatal death (first 28 days of life). Follow-up interviews were held with 21 of these parents.Results: Revealed four themes: (a) recognizing problems and responding to the loss, (b) dealing with stressful life events, (c) creating and cherishing memories of their infant, and (d) living with the loss. Conclusions:The results of this study reveal experiences not previously reported, and provide a beginning understanding of the loss experience in this group of parents. Health care professionals should be aware of the presence of additional stressful events that parents may be experiencing and intervene appropriately to provide culturally competent care in a sensitive manner.

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Objective To provide an in-depth description of the decision-making process that women who are diagnosed with cancer undergo as they decide whether to accept or decline fertility cryopreservation. Design A qualitative, grounded theory approach. Setting and Participants Twenty-seven women (mean age = 29 years) who were diagnosed with cancer and were eligible for egg, embryo, or ovarian tissue cryopreservation were recruited from the Internet and two university centers. Methods Each woman participated in a semi-structured interview by phone (n = 21) or email (n = 6). Data were analyzed using the constant-comparative method to inductively ascertain the women’s decision-making process. NVivo 8 software was used to assist with data retrieval and analysis. Results The decision-making process consists of four major phases that women experience to actively formulate a decision: identify, contemplate, resolve, and engage. In the identify phase, women acquire knowledge and experience a double hit scenario that is often devastating. Within the contemplate phase, five interrelated dimensions emerged including constructing and/or endorsing preferences and values and undergoing decisional debriefing sessions. A decision is reached in the resolve phase and carried out in the engage phase. Among the participants, 14 declined fertility cryopreservation and 13 accepted egg and/or embryo cryopreservation. Conclusion The descriptive theoretical framework clarifies the underlying processes that women with cancer undergo to decide about fertility cryopreservation. Quality of care for women with cancer can be improved by implementing appropriately timed information and tailored developmental and contextual counseling to support decision making.

Background Young women with cancer now face the complex decision about whether to undergo fertility preservation. Yet little is known about how these women process information involved in making this decision. Objective The purpose of this paper is to expand theoretical understanding of the decision-making process by examining aspects of information processing among young women diagnosed with cancer. Methods Using a grounded theory approach, 27 women with cancer participated in individual, semi-structured interviews. Data were coded and analyzed using constant-comparison techniques that were guided by five dimensions within the Contemplate phase of the decision-making process framework. Results In the first dimension, young women acquired information primarily from clinicians and Internet sources. Experiential information, often obtained from peers, occurred in the second dimension. Preferences and values were constructed in the third dimension as women acquired factual, moral, and ethical information. Women desired tailored, personalized information that was specific to their situation in the fourth dimension; however, women struggled with communicating these needs to clinicians. In the fifth dimension, women offered detailed descriptions of clinician behaviors that enhance or impede decisional debriefing. Conclusion Better understanding of theoretical underpinnings surrounding women’s information processes can facilitate decision support and improve clinical care.

In the context of an inherited condition such as sickle cell disease (SCD), it is critical to understand how people with SCD or carriers (sickle cell trait [SCT]) face the challenges of making informed reproductive health decisions. The purpose of this analysis was to examine the beliefs, attitudes, and personal feelings of people with sickle cell disease or sickle cell trait related to making informed reproductive health decisions. We conducted three focus groups with a total of 15 people who had either SCD or SCT. We identified five themes: health related issues in sickle cell disease; testing for sickle cell trait; partner choice; sharing sickle cell status with partners; and reproductive options. These findings enhance understanding of the reproductive experiences in people with SCD and SCT and provide the groundwork for developing an educational intervention focused on making informed decisions about becoming a parent.