Family communication and courageous coping in Korean adolescents and young adults: a cross-sectional study.

Objective: Adolescents and young adults (AYAs) with cancer are a vulnerable population during a critical developmental transition that can benefit from the adoption of courageous coping. Parental support is crucial in enhancing adjustment and coping skills. The linkage between parent-adolescent communication (PAC) and the use of courageous coping (UCC), however, remains unclear.

The Concept of Double Protection in the Childhood Cancer Context.

Background: The concept of double protection is used to describe communication avoidance used by parents and their child or adolescents with cancer in attempts to protect the other against disease-related stress and emotions, resulting from communication about the cancer, its treatment, and thoughts. This concept has received limited attention in the research literature.

Objectives: The aims of this concept analysis are to (1) explore its defining characteristics, applicability, and utility, (2) spotlight the concept and increase awareness and interest among healthcare providers and researchers, and (3) provide a direction for future interventions to improve parent-child communication in the childhood cancer context.

Understanding Processes, Outcomes, and Contexts in Medication Adherence: The Medication Adherence Context and Outcomes (MACO) Framework.

Poor medication adherence is a significant problem, yet interventions to improve it have been largely ineffective. Existing ecological models indicate that adherence is multi-dimensional; however, they do not reflect understanding of context-specific processes and how they lead to adherence outcomes. A framework that reflects context-specific processes is important because it could be used to inform context-specific intervention delivery and measure associated adherence outcomes.

Interprofessional spiritual care education in pediatric hematology-oncology: A pilot study.

Background: Evidence and clinical guidelines call care team members to address the spiritual well-being of pediatric patients, especially adolescents and young adults (AYA), with cancer and blood disorders. However, the lack of relevant training in generalist spiritual care has been a key barrier. Therefore, we aimed to improve clinicians' capabilities by utilizing the Interprofessional Spiritual Care Education Curriculum (ISPEC) to close this gap in pediatric hematology-oncology.

Randomized Clinical Trial of a Self-care and Communication Intervention for Parents of Adolescent/Young Adults Undergoing High-Risk Cancer Treatment: A Report From the Children's Oncology Group.

Background: Parents of adolescents and young adults (AYAs) with cancer offer primary support to their children and often experience their own high levels of distress, affecting parent-AYA communication and quality of life.

Objective: To reduce parent distress and improve communication during high-risk cancer treatment, we examined efficacy of a self-care and communication intervention for parents and indirect benefit for AYAs receiving a therapeutic music video (TMV) intervention.

Methods: In this study, we conducted a multisite, randomized controlled trial with AYAs and parents enrolled as dyads (n = 110).

COMPLETE (Communication Plan Early Through End of Life): Development of a Research Program to Diminish Suffering for Children at End of Life.

While overall survival has improved significantly for children with cancer over the past 75 years, cancer remains the leading cause of death from disease among children and adolescents. Further, despite the many advances in medical and nursing care, children with cancer still experience significant physical and emotional suffering over the course of their illness, especially at the end of life (EOL). Children endure significant rates of high-intensity medical interventions (e.

Triangulation approach to developing, evaluating, and applying the evolving theory of adolescent acceptance of asthma.

Acceptance is a term used by healthcare professionals regarding patients' psychosocial adjustment to chronic conditions. This paper describes a triangulation approach, applied over 25 years, to develop and evaluate a theory of adolescent acceptance of asthma. The theory was used to guide the development and evaluation of an education and counseling program focused on fostering acceptance.

Parents' Experiences of Having a Young Child With Acute Lymphoblastic Leukemia in China.

Background: Understanding parents' experiences is a prerequisite to developing interventions that are sensitive to needs of children and families. In China, little is known about parental experiences of having a young child with acute lymphoblastic leukemia (ALL). This phenomenological study aimed to describe parental experiences of having a young child with ALL in China.

Active Music Engagement and Cortisol as an Acute Stress Biomarker in Young Hematopoietic Stem Cell Transplant Patients and Caregivers: Results of a Single Case Design Pilot Study.

This paper reports the results of a single case design pilot study of a music therapy intervention [the Active Music Engagement (AME)] for young children (age 3.51 to 4.53 years) undergoing hematopoietic stem cell transplantation (HCST) and their caregivers.

The experiences of health-care providers during the COVID-19 crisis in China: a qualitative study.

Background: In the early stages of the outbreak of coronavirus disease 2019 (COVID-19) in Hubei, China, the local health-care system was overwhelmed. Physicians and nurses who had no infectious disease expertise were recruited to provide care to patients with COVID-19. To our knowledge, no studies on their experiences of combating COVID-19 have been published.

A Pilot Study of the Effects of COMPLETE: A Communication Plan Early Through End of Life, on End-of-Life Outcomes in Children With Cancer.

Context: Most children with cancer die in hospital settings, without hospice, and many suffer from high-intensity medical interventions and pain at end of life (EOL).

Objectives: To examine the effects of COMPLETE: a communication plan early through EOL to increase hospice enrollment in children with cancer at EOL.

Methods: This is a two-phase, single-arm, two-center, and prospective pilot study of hospice enrollment in children with cancer whose parents received COMPLETE.

Predictors of resilience among adolescent disaster survivors: A path analysis.

Aims: To investigate a theoretical model of risk and protective factors to predict resilience among adolescent disaster survivors.

Design: A cross-sectional study.

Methods: Parent's consent and student's informed consent forms were distributed at seven schools in a postdisaster setting (Yogyakarta, Indonesia) between July-October 2017; those who agreed to participate had to complete the self-reported questionnaires.

Cortisol as an Acute Stress Biomarker in Young Hematopoietic Cell Transplant Patients/Caregivers: Active Music Engagement Protocol.

Primary aims of the proposed protocol are to determine the feasibility/acceptability of the active music engagement intervention protocol during hematopoietic stem cell transplantation (HSCT) and clinical feasibility/acceptability of the biological sample collection schedule. The authors propose a single-case, alternating treatment design to compare levels of child and caregiver cortisol in blood and saliva collected on alternating days, when the dyad receives and does not receive AME sessions. Included are the scientific rationale for this design and detailed intervention and sample collection schedules based on transplant type.

Development and Psychometric Evaluation of the Connectedness with Health Care Providers Scale for Adolescents and Young Adults with Cancer.

Purposes of this study were to (1) develop an instrument of connectedness with health care providers (HCPs) for adolescents and young adults (AYAs) with cancer (ages 13 to 21 years); (2) evaluate the content validity of the instrument through expert panels; (3) assess the dimensionality of the instrument; (4) evaluate the internal consistency reliability of the instrument; and (5) evaluate the convergent and discriminant validity of the instrument through hypothesis testing. The Connectedness with HCPs Scale (C-HCPS) was developed and evaluated in two phases. Phase I involved generating items, having two expert panels (AYAs and clinicians;  = 13) evaluate the items for content validity, and pretesting the instrument before pilot testing ( = 6).

Adolescent/Young Adult Perspectives of a Therapeutic Music Video Intervention to Improve Resilience During Hematopoietic Stem Cell Transplant for Cancer.

This empirical phenomenology study reports adolescents/young adults (AYA) experiences of the therapeutic music video (TMV) intervention arm of a randomized controlled clinical trial (Children's Oncology Group; COG-ANUR0631; R01 NR008583) during hospitalization for a hematopoietic stem cell transplant. A purposive subsample of 14 AYA were interviewed using a broad open-ended data-generating question about their TMV intervention experiences. At the end of each interview, we also asked AYA for suggestions on how to improve the TMV.

A Systematic Literature Review of the Current State of Knowledge Related to Interventions for Bereaved Parents.

Aims: The purpose of this systematic literature review is to describe the interventions for bereaved parents, evaluate intervention effectiveness through study methodology rigor, replicability, and theoretical foundations.

Methods: We searched MEDLINE via PubMed (1966-2018), CINAHL (1937-present), PsycINFO (1887-present), and Embase (1947-present) using various search words and MeSH terms related to the study purpose. A blinded screening of title/abstract was performed, with conflicting inclusion decisions resolved through group discussions.

Improving recruitment and retention of adolescents and young adults with cancer in randomized controlled clinical trials.

Participation of adolescents and young adults (AYAs) with cancer in randomized clinical trials (RCTs) is necessary to advance treatments and psychosocial programs. Exploring AYAs experiences in an RCT will inform strategies to support recruitment and retention. A qualitative design was used to study the experiences of 13 AYAs in the Stories and Music for Adolescent and Young Adult Resilience during Transplant I (SMART I) trial.

Oncology Nurse Managers' Perceptions of Palliative Care and End-of-Life Communication.

The purpose of this study was to describe pediatric oncology nurse managers' (NMs) perspectives of palliative care/end-of-life (PC/EOL) communication. The study, guided by group-as-a-whole theory and empirical phenomenology, was part of a larger, multisite study aimed at understanding pediatric oncology nurses' experiences of PC/EOL communication. Nurses were assigned to focus groups based on length or type of experience (i.

Like Prisoners in a War Camp: Adolescents and Young Adult Cancer Survivors' Perspectives of Disconnectedness From Healthcare Providers During Cancer Treatment.

Background: Adolescent/young adult (AYA) cancer survivors experience greater psychosocial distress than younger or older adults. To address their psychosocial distress, it is important that healthcare providers (HCPs) foster connectedness with AYAs; however, some HCPs' words and behaviors may actually create a sense of disconnectedness with AYAs.

Objective: The aim of this study was to describe AYA cancer survivors' experiences of disconnectedness from HCPs during cancer treatment.

Perceived Stress and the Fatigue Symptom Cluster in Childhood Brain Tumor Survivors.

Objectives: To explore and estimate relationships among the elements of the symptom cluster in survivors of brain tumors aged 8-12 years during early survivorship.

Sample & Setting: Child participants completed treatment at least six months and less than six years prior to enrollment at Children's Hospital of Alabama in Birmingham or Cook Children's Medical Center in Fort Worth, Texas.

Methods & Variables: With cross-sectional methods, the authors measured child-perceived stress, sleep-wake disturbance (SWD) (parent report), and fatigue.

Well-Being of Child and Family Participants in Phase 1 Pediatric Oncology Clinical Trials.

Problem Identification: Pediatric oncology phase 1 clinical trials (P1Ts) are essential to developing new anticancer therapies; however, they raise complex ethical concerns about balancing the need for this research with the well-being of participating children. The purpose of this integrative review was to synthesize and appraise the evidence of how P1T participation, which begins with consent and ends with the transition off the P1T, can affect the well-being (either positively or negatively) of children with cancer. The Resilience in Individuals and Families Affected by Cancer Framework, which has an outcome of well-being, was used to synthesize findings.

Parental Experiences of Child Participation in a Phase I Pediatric Oncology Clinical Trial: "We Don't Have Time to Waste".

Children with cancer are only eligible for phase I clinical trials (P1Ts) when no known curative therapy remains. However, the primary aims of P1Ts are not focused on directly benefiting participants. This raises ethical concerns that can be best evaluated by exploring the experiences of participants.

Parent Perspectives of Receiving Early Information About Palliative and End-of-Life Care Options From Their Child's Pediatric Providers.

Background: Parents of children diagnosed with cancer may experience decision regret about cancer treatment decisions and dissatisfaction with the perceived clarity in information received from their child's providers.

Objective: The aim of this study was to describe parental perspectives about receiving an early palliative care and end-of-life (PC/EOL) communication intervention titled "Communication Plan: Early through End of Life Intervention" (COMPLETE) from an interprofessional team of physician and registered nurse providers.

Methods: Ten parents participated in semistructured interviews after receiving the COMPLETE intervention.

A Connectedness Primer for Healthcare Providers: Adolescents/Young Adult Cancer Survivors' Perspectives on Behaviors That Foster Connectedness During Cancer Treatment and the Resulting Positive Outcomes.

Purpose: Many healthcare providers (HCPs) struggle to communicate and connect with adolescents and young adults (AYA) with cancer that hinders their ability to adequately assess and address the psychosocial needs of AYA. The purpose of this article is to describe the key behaviors of HCPs AYA perceive as essential to fostering connectedness with them and the outcomes AYA experience from such connectedness.

Methods: The sample for this empirical phenomenological study was nine AYA cancer survivors (aged 20-23 years) who were diagnosed in adolescence.

Bereaved Parents' Health Status During the First 6 Months After Their Child's Death.

Purpose: To examine bereaved parents' physical, mental, and social health during the first 6 months after their child's (<12 years) death from a life-threatening illness.

Background And Significance: Bereaved parents have higher mortality and morbidity rates when compared to nonbereaved parents. Acute illnesses, hospitalizations, and medication changes are highest in the first 6 months.