Voicing My CHOiCES (VMC) is an advance care planning (ACP) guide designed to assist adolescents and young adults (AYAs) with serious illness in communicating their care preferences to others. This study evaluated a revised version of VMC. A structured interview was used alongside two versions of VMC to solicit AYA preferences and feedback regarding content and layout changes.
View Article and Find Full Text PDFClin Pract Pediatr Psychol
March 2023
Objective: Chronic illness in children and adolescents is associated with significant stress and risk of psychosocial problems. In busy pediatric clinics, limited time and resources are significant barriers to providing mental health assessment for every child. A brief, real-time self-report measure of psychosocial problems is needed.
View Article and Find Full Text PDFNeurofibromatosis type 1 (NF1) is a genetic condition affecting 1 in 3000 individuals. Having a child with a chronic illness can introduce both practical and emotional challenges to a parental relationship. This cross-sectional study was administered to 50 parents of children with NF1, diagnosed between the ages of 1-24.
View Article and Find Full Text PDFBackground: There is limited understanding of associations between a combination of health behaviors (physical activity, sedentary/screen-time, diet) and cardiometabolic health risk factors, physical performance, and emotional health among young (<18) childhood cancer survivors (CCS). The aims of this research were to address this gap by 1) deriving health behavior adherence profiles among CCS, and 2) examining associations among demographic, diagnosis and/or treatment exposures, cardiometabolic, physical performance, and emotional functioning with health behavior profile membership.
Methods: Participants included 397 CCS (≥5 years post-diagnosis; 10-17 years old) enrolled in the St.
Background And Aims: End-of-life (EoL) discussions can be difficult for seriously ill adolescents and young adults (AYAs). Researchers aimed to determine whether completing (VMC)-a research-informed advance care planning (ACP) guide-increased communication with family, friends, or health care providers (HCPs), and to evaluate the experience of those with whom VMC was shared.
Methods: Family, friends, or HCPs who the AYAs had shared their completed VMC with were administered structured interviews to assess their perception of the ACP discussion, changes in their relationship, conversation quality, and whether the discussion prompted changes in care.
Objectives: Psychosocial late effects among survivors of pediatric brain tumors are common. For school-aged survivors, social skills deficits and isolation present a particular challenge. Social problem-solving is a social skill that is an important determinant of social outcomes and may yield a potential target for intervention.
View Article and Find Full Text PDFObjective: The primary aims of this research were to examine substance use among adolescent and young adult survivors of pediatric cancer (AYA survivors) and AYA without a history of chronic or life threatening illness (AYA comparisons) and to explore links between demographic, medical, caregiver-AYA, and family system factors with AYA substance use patterns.
Methods: Participants included 289 AYA (survivors, n = 171; comparisons = 118; 51% female; M = 17.15, SD = 2.
Objectives: The preschool years (ages 4-6) are essential for the development of social-emotional skills, such as problem solving, emotion regulation, and conflict resolution. For children with cancer treated during this period, especially those with brain tumors, there are questions regarding the consequences of missed normative social experiences. The objective of this pilot study was to explore the social-emotional functioning of young children with brain tumors, as compared to those with non-CNS solid tumors, who have recently completed treatment.
View Article and Find Full Text PDFObjectives: Social interaction and peer relationships are critical for development, especially for adolescents and young adults (AYA). Cancer treatment may disrupt social functioning and impact quality of life. Prior research into AYA social functioning has primarily been qualitative in nature or assessed via broad measures of functioning.
View Article and Find Full Text PDFPurpose: Ipilimumab was the first FDA-approved agent for advanced melanoma to improve survival and represents a paradigm shift in melanoma and cancer treatment. Its unique toxicity profile and kinetics of treatment response raise novel patient education challenges. We assessed patient perceptions of ipilimumab therapy across the treatment trajectory.
View Article and Find Full Text PDFCancer survivors narrate their experiences in unique ways, articulating different aspects of the cancer journey. The purpose of this study was to analyze the content of cancer narratives that melanoma survivors share online in order to present the ways that survivors narrate their cancer experience, to identify survivors' motivations for sharing, and to better understand the ways in which survivors are impacted by and cope with the diagnosis and treatment of cancer. The sample consisted of 95 unique melanoma survivor narratives, accessed from the Melanoma Research Foundation in November 2015, that were inductively and deductively coded for key themes and subthemes.
View Article and Find Full Text PDFProblem Identification: Oral anticancer medication (OAM) use has been steadily increasing, leading to several patient benefits. A notable challenge for nurses is accurate monitoring of patient OAM regimens because nonadherence is associated with poor health outcomes and decreased survival. Currently, no gold standard measure of OAM adherence exists.
View Article and Find Full Text PDFPurpose: The incidence of melanoma has been increasing dramatically among teenage and young adult women over the past several decades. Despite a causal link between ultraviolet light exposure and melanoma, a significant proportion of young women intentionally tan. Furthermore, we know very little about the family's role in melanoma-related risk practices.
View Article and Find Full Text PDFTanning increases dramatically through the teenage years, but the family context of this health risk behavior is relatively unstudied. We conducted videotaped conversations between teenage girls (10th and 11th grade) and their mothers. We developed a coding system for discussion content and highlight findings including inadequate knowledge concerning the harms of tanning and positive views of outdoor tanning over indoor tanning, yet agreement that all tans are attractive.
View Article and Find Full Text PDF