Cancer and its treatments are known to compromise fertility in adolescents and young adults (AYAs). The emotional burden of possible infertility is reduced in those who receive supportive oncofertility care. In legal minors, provision of health care must consider the legal context and desire that AYAs have for autonomous decision-making, together with their competence to make health decisions.
View Article and Find Full Text PDFTo understand how adolescents and young adults (AYAs) with cancer experience family and partner involvement in fertility preservation (FP) decision-making. As part of a nationally representative Australian cross-sectional study of 15-25-year olds with cancer, 196 participants (mean age 19.9 [standard deviation 3.
View Article and Find Full Text PDFBackground: Children undergoing hematopoietic stem cell transplantation (HSCT) are vulnerable to pain.
Objective: This study aimed to examine how healthcare providers and parents assessed pain and what contextual factors influenced their pain assessment practices for children hospitalized after allogeneic HSCT therapy.
Methods: A qualitative case study was conducted in a tertiary level pediatric HSCT unit in 2 phases.
Objective: This qualitative study examined ethical challenges reported by healthcare professionals (HCPs) working in a large Australian pediatric oncology center during a period of strict COVID-19 restrictions.
Methods: We conducted semi-structured interviews with 21 HCPs who provided pediatric cancer care during the pandemic in 2020, during strict lockdown periods. Interviews examined the difficulties they faced, as well as their own ethical evaluation of the impact of COVID-19 policies on oncology care.
This study describes the behavioral and emotional adjustment of 77 children and adolescents 3 months post-treatment for acute lymphoblastic leukemia (ALL), compared to 52 age and sex-matched healthy peers. Parents, teachers, and self-report ratings on the Behavioral Assessment System for Children, Second Edition (BASC-2) were utilized to measure psychological function. While overall mean scores were in the average range for both groups, parents and teachers rated patients higher on behavior symptoms, internalizing problems and adaptive skill difficulties.
View Article and Find Full Text PDFPurpose: Precision medicine uses advanced molecular techniques to guide the use of targeted therapeutic drugs and is an emerging paradigm in pediatric oncology. Clinical evidence related to the efficacy of many novel targeted drugs, however, is currently very limited given the rarity of pediatric cancer and the lack of published evidence for the use of these drugs in children. This systematic review aimed to evaluate the existing evidence for the feasibility and clinical efficacy of precision medicine in pediatric oncology.
View Article and Find Full Text PDFObjective: We assessed the acceptability of, and perceived benefits/barriers to, using Electronic health (eHealth) technology for childhood cancer survivorship care.
Methods: We interviewed survivors, their parents, and their nominated GP. We described a hypothetical eHealth tool to manage survivorship care and asked their likely use of, and perceived benefits/concerns for, the use of the tool.
Background: We examined parents' perceptions of their child's oncology care during a period of significant COVID-19 restrictions in Australia.
Methods: Parents of children, 0-18 years, receiving hospital-based cancer treatment, completed a survey examining their COVID-19 exposure and impact, information and knowledge, and perception of their child's medical care. Recruitment occurred between October and November 2020.
Background: Few studies haveexamined parent and family adaptation in the early period following the end of childhood cancer treatment. We examined parent adjustment at the end of their child's treatment for acute lymphoblastic leukemia (ALL).
Methods: Parents of childhood cancer survivors (CCS), who were 3 months post-ALL treatment, and parents of typically developing children completed measures of psychological and family functioning.
Tech Innov Patient Support Radiat Oncol
September 2021
Background: Procedural anxiety in children undergoing radiation therapy (RT) is common and is associated with poor procedural compliance and an increased used of general anaesthesia (GA). There is emerging evidence that Virtual Reality (VR) technology may reduce medical procedural distress through realistic and educative exposure to actual procedures via virtual simulation.
Objective: To examine the feasibility, acceptability and efficacy of an Immersive VR exposure intervention aimed at reducing anxiety and enhancing preparedness for pediatric patients undergoing radiation therapy, and their parents.
Background: The emerging role of genomically guided precision medicine in pediatric cancer care presents significant clinical, practical, and ethical challenges. We investigated the factors that influence decision-making in genomic medicine from the perspective of different stakeholders in the context of difficult-to-treat childhood cancer.
Methods: Health care providers (HCPs), parents of childhood cancer survivors, and general community members completed an online discrete choice experiment survey.
Cancer Rep (Hoboken)
December 2021
Background: Significant challenges persist in treating children with rare, relapsed, or refractory malignancies. Novel molecularly targeted drugs promise improved outcomes for these children with reduced toxicity. However, there is often limited evidence to substantiate their clinical efficacy and guide their use.
View Article and Find Full Text PDFPurpose: To investigate whether Immersive Virtual Reality (VR) has a greater positive influence on oncology patients' physical and emotional mood states when compared to an iPad attentional control condition. Our secondary objective was to understand what factors influenced VR effectiveness.
Method: Participants were 90 oncology inpatients, aged 7-19 years, and their primary parent caregiver.
Importance: A substantial proportion of parents whose child is diagnosed with a life-threatening illness experience high levels of distress that can lead to long-term mental health difficulties. This can affect the child's recovery.
Objective: To evaluate the efficacy of an acceptance and commitment therapy-based group intervention, delivered using videoconferencing, in reducing posttraumatic stress symptoms (PTSS) in these parents.
Virtual reality (VR), a novel and highly immersive technology, offers promise in addressing potential psychological impacts of cancer treatments and hospitalization. The primary aim of this study was to examine multiple key user perspectives on the acceptability and feasibility of an Immersive VR therapeutic intervention for use with hospitalized patients with cancer. Secondary aims were to identify issues and opportunities related to the adoption and clinical implementation of VR in pediatric oncology settings.
View Article and Find Full Text PDFBackground: This study investigated factors associated with long-term mental health outcomes of parents of children with a cardiac illness. The objective of the study was to investigate the hypothesis that acute mental health status and psychosocial risk factors (eg, acute stress reactions, quality of life) would be more strongly associated with long-term mental health outcomes than demographic, diagnostic, morphology, or procedure-related factors.
Methods: Participants were 31 parents of children who underwent cardiac operations in a pediatric hospital.
Background: Treatment decision-making in pediatric oncology can be complex. Recent advances in genome sequencing and novel or 'personalized' therapies potentially increases the complexity of decision-making and treatment options.
Objectives: This study explored the views and experiences of healthcare providers (HCPs) and parents with respect to decision-making in difficult-to-treat cancers, including genomic decision-making.
Purpose: The aim of this study was to explore adolescent and young adult (AYA) experiences and preferences for social support early within the continuum of cancer treatment.
Methods: AYAs aged 15-25 years old at diagnosis were recruited from 6 clinical services that were purposively selected for providing specialist cancer care to AYAs across 3 Australian states and within paediatric and adult services. In-depth, semi-structured interviews were conducted by telephone 6-24 months from diagnosis.
Purpose: Despite survival rates greater than 90%, treatment for paediatric acute lymphoblastic leukaemia (ALL) remains challenging for families. The early post-treatment phase is an especially unique time of adjustment. The primary aim of this review was to identify and synthesise research on health-related quality of life (HRQoL) for patients up to five years post-treatment.
View Article and Find Full Text PDFObjective: Serious childhood illness is associated with significant parent psychological distress. This study aimed to (a) document acute and posttraumatic stress symptoms (PTSS) in parents of children with various life-threatening illnesses; (b) identify trajectory patterns of parental PTSS and recovery over 18 months; (c) determine psychosocial, demographic, and illness factors associated with trajectory group membership.
Methods: In total, 159 parents (115 mothers, 44 fathers) from 122 families participated in a prospective, longitudinal study that assessed parent psychological responses across four time points-at diagnosis, and 3, 6, and 18 months later.
This study explored the relationship between individual and family-level risk in predicting longer-term parental distress following their child's unexpected diagnosis of serious illness. A mediation model was tested, whereby parents' pre-existing psychosocial risk predicts longer-term posttraumatic stress symptoms, indirectly through parents' acute stress response. One hundred and thirty-two parents of 104 children participated.
View Article and Find Full Text PDFPurpose: This study aimed to explore health-related information needs of adolescent and young adults (AYAs) and their parent-carers and to examine demographic and clinical variables associated with unmet information needs, including patient activation.
Methods: In a national cross-sectional study, 196 Australian AYAs diagnosed with cancer between 15 and 25 years and within 24 months of diagnosis and 204 parent-carers reported on total and unmet needs for cancer and health-related information. Fifty-one percent of AYAs were male, 81% had completed treatment and 86% were treated in adult hospitals.
J Adolesc Young Adult Oncol
April 2018
Purpose: This study describes the early educational and vocational outcomes of Australian adolescents and young adults (AYAs) after cancer diagnosis and examines factors associated with these outcomes.
Methods: Within this cross-sectional national Australian study, 196 AYAs aged 15-25 years at cancer diagnosis and within 6-24 months of diagnosis were recruited from 18 sites. Participants completed a survey that included questions about school and work outcomes, support received regarding necessary changes to education and vocation, and validated measures of anxiety, depression, and post-traumatic stress.
This study investigated factors associated with acute stress symptoms in parents of seriously ill children across a range of illnesses and treatment settings within a pediatric hospital setting. It was hypothesized that psychosocial variables would be more strongly associated with acute stress responses than demographic and child illness variables. Participants were 115 mothers and 56 fathers of children treated within the oncology, cardiology, and intensive care departments of a pediatric hospital.
View Article and Find Full Text PDFObjective: Posttraumatic stress disorder (PTSD) and posttraumatic stress symptoms (PTSSs) are common for parents of children with life-threatening illnesses or injuries. The impact of these psychological sequelae on parents' personal use of health services is unknown. The present study aimed to investigate whether PTSS severity prospectively predicts increased health service utilization (HSU), and to examine the relative importance of other predisposing and enabling factors in predicting HSU.
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