Day-to-Day Decision Making by Adolescents and Young Adults with Cancer.

Background: Adolescents and young adults (AYAs) with cancer must negotiate the transition between childhood and adulthood while dealing with a life-threatening illness. AYA involvement in decision making varies depending on the type of decision and when decisions occur during treatment, and evidence suggests that AYAs want to be involved in decision making. Objective: To explore involvement of AYAs with cancer in day-to-day decisions affected by their cancer and treatment. Methods: This qualitative study used interpretive focused ethnography within the sociologic tradition, informed by symbolic interactionism. Semi-structured interviews and informal participant observation took place at two quaternary pediatric oncology programs. Results: Thirty-one interviews were conducted with 16 AYAs ages 15 to 20 years. Major day to day decision-making categories identified included: (1) mental mindset, (2) self-care practices, (3) self-advocacy, and (4) negotiating relationships. Participants described how they came to grips with their illness early on and decided to fight their cancer. They described decisions they made to protect their health, how they advocated for themselves and decisions they made about relationships with family and friends. Conclusions: Through day-to-day decisions, participants managed the impact of cancer and its treatment on their daily lives. Research should focus on developing and implementing interventions to empower AYAs to participate in day-to-day decisions that will affect how they manage their cancer, its treatment and ultimately their outcomes. Implications for Practice: Healthcare providers can facilitate AYA's participation in day-to-day decision making through encouraging autonomy and self-efficacy by providing support and through effective communication.

3 Dimensions of Treatment Decision Making in Adolescents and Young Adults With Cancer.

BACKGROUND: Adolescents and young adults (AYAs) experience treatment nonadherence rates as high as 60%, which can increase the risk of cancer relapse. Involvement of AYAs in treatment decisions might support adherence to medical treatment. OBJECTIVE: The aim of this study was to explore the involvement of AYAs, aged 15 to 20 years, in cancer treatment decision making (TDM). METHODS: Using interpretive focused ethnography, we conducted interviews with 16 AYAs (total of 31 interviews) receiving cancer treatment within 1 year of diagnosis. Participants reflected on a major recent TDM experience (eg, clinical trial, surgery) and other treatment decisions. RESULTS: Participants distinguished important major cancer treatment decisions from minor supportive care decisions. We identified 3 common dimensions related to AYAs' involvement in cancer TDM: (1) becoming experienced with cancer, (2) import of the decision, and (3) decision-making roles. The preferences of AYAs for participation in TDM varied over time and by type of decision. We have proposed a 3-dimensional model to illustrate how these dimensions might interact to portray TDM during the first year of cancer treatment for AYAs. CONCLUSIONS: As AYAs accumulate experience in making decisions, their TDM preferences might evolve at different rates depending on whether the decisions are perceived to be minor or major. Parents played a particularly important supportive role in TDM for AYA participants. IMPLICATIONS FOR PRACTICE: Clinicians should consider the AYAs' preferences and the role they want to assume in making different decisions in order to support and encourage involvement in their TDM and care.

Treatment Decision-Making Involvement in Adolescents and Young Adults With Cancer.

PROBLEM IDENTIFICATION: Involvement in treatment decision making (TDM) is considered a key element of patient- and family-centered care and positively affects outcomes. However, for adolescents and young adults (AYAs) with cancer, little is known about the current state of knowledge about their perspective on and involvement in TDM or the factors influencing AYAs' TDM involvement. LITERATURE SEARCH: Integrative review focused on AYAs aged 15-21 years, their involvement in TDM, and factors influencing their involvement using the MEDLINE®, PsycINFO®, CINAHL®, and Web of Science databases. DATA EVALUATION: 4,047 articles were identified; 21 met inclusion criteria. SYNTHESIS: Five factors were identified. IMPLICATIONS FOR RESEARCH: Research is needed to understand AYAs' preferences for TDM, the type and degree of their involvement, and the interactions between factors that contribute to or impede TDM.

Facilitators and Barriers to Interdisciplinary Communication between Providers in Primary Care and Palliative Care.

BACKGROUND: Community-based palliative care (CBPC) plays an integral role in addressing the complex care needs of older adults with serious chronic illnesses, but is premised on effective communication and collaboration between primary care providers (PCPs) and the providers of specialty palliative care (SPC). Optimal strategies to achieve the goal of coordinated care are ill-defined. OBJECTIVE: The objective of this study was to understand the facilitators and barriers to optimal, coordinated interdisciplinary provision of CBPC. METHODS: This was a qualitative study using a constructivist grounded theory approach. Thirty semistructured interviews were conducted with primary and palliative care interdisciplinary team members in academic and community settings. RESULTS: Major categories emerging from the data that positively or negatively influence optimal provision of coordinated care included feedback loops and interactions; clarity of roles; knowledge of palliative care, and workforce and structural constraints. Facilitators were frequent in-person, e-mail, or electronic medical record-based communication; defined role boundaries; and education of PCPs to distinguish elements of generalist palliative care (GPC) and more complex elements or situations requiring SPC. Barriers included inadequate communication that prevented a shared understanding of patients' needs and goals of care, limited time in primary care to provide GPC, and limited workforce in SPC. CONCLUSIONS: Our findings suggest that processes are needed that promote communication, including structured communication strategies between PCPs and SPC providers, clarification of role boundaries, enrichment of nonspecialty providers' competence in GPC, and enhanced access to CBPC.

"It was pretty scary": the theme of fear in young adult women's descriptions of a history of adolescent dating abuse.

The mental health impact of abusive adolescent dating relationships has not been well described, but fear related to abuse has been reported. We elaborate the theme of fear in women's descriptions of a history of adolescent dating abuse. A sample of community-based women, ages 19-34, who experienced an abusive dating relationship during adolescence (ages 11-20) was used. Data were analyzed via thematic analysis. Fear was a consistent and resonant theme. Three types of fear were identified: fear for self, fear for other relationships, and fearful expectation. These results offer important insights into the impact of abusive adolescent relationships on women's mental health.