Key Points Question Are concerns about the opioid epidemic in the United States and the heightened oversight and restrictions on prescribing opioids associated with changes in the management of acute and chronic pain for patients with sickle cell disease? Findings This qualitative study interviewed 15 adults with sickle cell disease. Participants reported that they face increased barriers to the use of opioids for pain management, that their physicians exclusively focus on opioid dosage without establishing a multimodality pain management plan, and that they lack access to nonopioid therapies. Meaning Adult patients with sickle cell disease should be included in establishing goals for managing pain and improving functionality using multimodality approaches.

Sickle cell disease (SCD) is an inherited blood disorder that primarily affects African-American and other ethnic minority populations. There are three available disease-modifying therapies for sickle cell disease: hydroxyurea (HU), bone marrow transplantation (BMT), and chronic blood transfusion (CBT). Since these treatments vary in their therapeutic intent, efficacy in preventing progression of the disease, short and long-term adverse effects, costs and patient burden, the decision-making process regarding these therapies is complicated for both the patient and healthcare provider. While previous research has focused on the patient perspective of treatment-related decision making, there is a paucity of research investigating the physician perspective of treatment-related decision making. We conducted a qualitative study with physicians who were experts in the field of SCD. Interviews focused on physician perceptions of patient decisional needs as well as physicians’ approach to decision making regarding disease-modifying therapies in SCD. Thirty-six physician interviews were analyzed, with a focus on their perspectives regarding available treatment options and on how they approach decision making with patients. We identified two narrative approaches. The Collaborative approach (CA) was characterized by emphasizing the need to discuss all possible treatment options to ensure that the patient and/or family was equipped to make an informed decision. The Proponent approach (PA) was characterized by strongly advocating a pre-determined treatment plan and providing patients/families with information, with the objective of convincing them to accept the treatment. An interplay of patient-related and disease-related factors, decision type and physician-related factors, as well as institutional frameworks, influenced physician perspectives on treatment options and decision making regarding these therapies. These findings point to the potential value of developing systems to foster patient engagement as a way of facilitating shared decision making.

Sickle cell disease (SCD) is one of the most commonly inherited hemoglobin disorders that has a significant impact on quality of life, increased childhood morbidity, and premature mortality. Currently, hematopoietic stem cell transplant (HSCT) is the only treatment with a curative intent. The objective of this study was to determine patients' and caregivers' knowledge of HSCT, the factors influencing the decision to pursue HSCT, their experiences, and the impact of a successful HSCT on their daily living. At Children's Healthcare of Atlanta, we conducted a qualitative study using a semistructured interview guide of patient-caregiver dyads and 2 focus-group sessions of adult long-term survivors of HSCT to elicit key factors in decision making, their experiences with HSCT, and the impact of HSCT. Interviews and focus-group sessions were recorded and transcribed verbatim. Transcripts were coded and analyzed for emerging themes using NVivo 10.0. We enrolled 11 patient-caregiver dyads (n = 6, female patients; n = 10, mothers) in the qualitative interviews and 2 focus groups with 5 (n = 2, females) and 7 (n = 3, females) participants in each group, respectively. Our analysis revealed 3 prominent themes: (1) factors and concerns influencing HSCT decision making; (2) HSCT experiences; and (3) impact of HSCT on daily life. Participants reported that progression of disease-related complications and availability of a matched donor strongly influenced the decision to pursue HSCT. Although patients and caregivers had to deal with the arduous process of HSCT and transplant-related morbidities, participants were satisfied with their decision and expressed no decisional regrets. Decision making for HSCT for patients with SCD is a complex process. Understanding the key influential factors in decision making and the impact HSCT has on these patients and their families will generate crucial insights that can guide the care of future patients and research studies.

How is the transition to parenthood constructed in a context in which fatherhood and motherhood are therapeutically defined? Relying on ethnographic observations of 66 expectant and new parent couples assigned to 13 different parent educator-led groups, we show how, with the arrival of a baby, a sense of transition is crafted and often amplified. Our analysis suggests that just as the overall life course is constructed through language and meaningful gesture, so also the transition to parenthood is constructed through verbal and nonverbal signification. Using a vocabulary of contrast and change, parent educators and expectant and new parents create a collective feeling that they are witnessing a transformation of major proportions. By emphasizing the idea that things are no longer the same, parent educators also establish themselves as authorities whose job it is to steer fathers and mothers through unfamiliar terrain. For their part, expectant and new parents not only listen to but often also replicate the parent educators' vocabularies and, in so doing, further magnify distinctions between before parenthood and after, and between one stage of parenthood and another.Childbirth stands uncomfortably at the junction of the two worlds of nature and culture. Like death and disease it is a biological event, but the defining feature of biological events in human life is their social character. Ann Oakley (1980:7) Students of the life course increasingly see the value of employing a theoretical approach that does not presume "the objective existence of age-related [or stage-related] experiential trajectories," but rather is "more concerned with how individuals actively assign meanings and significance to experience over time, within the context of group life and social interaction" (Holstein and Gubrium 2003:835; see also Gubrium and Buckholdt 1977;Holstein and Gubrium 2000). From this perspective, it is less important to ask how people age, and about what happens to them as they move from one phase of life to the next, than it is to interrogate the very notion of age and to research how biographies are culturally crafted. The biological facts of aging and life course are not negated; they just are not believed to be sufficient to explain people's temporal experience.Drawing from a blend of Chicago School-oriented symbolic interactionism and phenomenologically inspired cognitive sociology (e.g., Berger and Luckmann 1966;Blumer 1969), this alternative approach rests on four central assumptions (drawing from Gubrium and Buckholdt 1977:54-5). The first is that "there is no such thing as life change separate from the public sense of it presented and negotiated by members of occasions when life course change is being considered." In concrete terms, life course transitions in particular, and social cognitions in general, are tied to the thought communities that serve as points of reference