"If We Don't Beat It, How Long Will It Take?" Worries and Concerns of Children with Advanced Cancer and Their Parents.

Navigating pediatric advanced cancer is challenging for children and parents, resulting in increased risk for psychological distress. While research has explored parent worries/concerns, few studies have included children's perspectives. To explore worries/concerns in children with advanced cancer and their parents.

Benefit-finding in children with advanced cancer and their parents.

Objectives: Although pediatric cancer often causes significant stress for families, most childhood cancer survivors are resilient and do not exhibit severe or lasting psychopathology. Research demonstrates some survivors may report benefit-finding or positive outcomes following this stressful life event. However, considerably less research has included families of children who are unlikely to survive their illness.

Factors associated with caregiver strain among mothers and fathers of children with advanced cancer.

Objectives: To characterize caregiver experiences in the context of advanced pediatric cancer by identifying individual (i.e., demographic factors, stress) and family context factors (i.

Mixed-method examination of factors associated with adolescent decision-making and involvement in care in the context of advanced cancer.

Objectives: Adolescents with cancer often experience significant symptom burden and aggressive treatment near end-of-life. Increased adolescent involvement in care and decision-making may benefit health outcomes. Limited research has examined factors associated with adolescents' involvement in care in the context of advanced disease.

Cancer-related stress in childhood cancer survivorship: Prevalence and associations with perceptions of health risks and quality of life.

Objective: Limited research has characterized cancer-related stress (CRS) among families of childhood cancer survivors. We examined the prevalence of CRS among survivors and caregivers, as well as its association with health risk perceptions (i.e.

The impact of the COVID-19 pandemic on families of children with medical complexity: A qualitative study of caregivers' experiences.

Background: Families of children with medical complexity (CMC) have been negatively affected by the COVID-19 pandemic, experiencing challenges such as decreased access to services, increased financial hardship and increased isolation. However, there are few qualitative studies which explore parental experiences. The aim of the present study was to describe the impact of the COVID-19 pandemic on families of CMC.

Palliative Care Interventions Among Adolescents and Young Adults with Serious Illness: A Scoping Review.

Objective: To map the range of multidisciplinary palliative care interventions that are available to adolescents and young adults (AYAs) with serious illness.

Methods: Scoping review methodology as outlined by Arksey and O'Malley.

Results: Twenty-two articles describing nine specific AYA-focused, multidisciplinary palliative care interventions were included in this review.

Communication within families about advanced pediatric cancer: A qualitative study.

Objectives: This qualitative study examined how families share information and feelings about advanced pediatric cancer from the perspective of both parents and children, as well as how these perspectives vary by child developmental stage.

Methods: Participants (24 mothers, 20 fathers, 23 youth [children and adolescents]) were from a larger longitudinal study at an academic pediatric hospital. Eligible youth had advanced cancer (physician-estimated prognosis of <60%, relapse, or refractory disease), were aged 5-19 years (>8 years old to participate independently), had an English-speaking parent, and lived within 140 miles of the hospital.

Caregiver perceptions of importance of COVID-19 preventative health guidelines and difficulty following guidelines are associated with child adherence rates.

Objective: To describe child adherence to four preventative-health guidelines during the COVID-19 pandemic and investigate caregiver-level correlates of adherence.

Method: Two hundred thirty-six caregivers (75% female) of children ages 6-12 years ( = 8 years; 53% male) living in the United States rated child adherence to four preventative-health guidelines between 10/16/2020 and 11/14/2020. Caregivers also rated perceived importance of each guideline in limiting virus spread and perceived difficulty in obtaining child compliance.

The impact of CNS-directed treatment on quality of life in childhood cancer survivors.

Purpose: Pediatric cancer survivors may have lower quality of life (QoL), but most research has assessed outcomes either in treatment or long-term survivorship. We focused on early survivorship (i.e.

Impact of End-of-Life Circumstances on the Adjustment of Bereaved Siblings of Children Who Died from Cancer.

The aim of this study was to examine the impact of end-of-life (EoL) circumstances on grief and internalizing symptoms among bereaved siblings. Bereaved families (N = 88) were recruited from three sites 3-12 months (M = 11.57, SD = 3.

End of life communication among caregivers of children with cancer: A qualitative approach to understanding support desired by families.

Objectives: Clinicians and parents are encouraged to have open and honest communication about end of life with children with cancer, yet there remains limited research in this area. We examined family communication and preferred forms of support among bereaved caregivers of children with cancer.

Methods: Bereaved caregivers were recruited through a closed social media group to complete an online survey providing retrospective reports of end of life communication with their child and preferences for communication support from health-care providers.

Longitudinal understanding of prognosis among adolescents with cancer.

Objective: Despite calls to increase prognosis communication for adolescents with cancer, limited research has examined their perceptions of prognosis as compared with their parents. We assessed adolescents' understanding of their prognosis relative to parents and oncologists.

Methods: Families of adolescents (aged 10-17) were recruited at two pediatric institutions following a new diagnosis or relapse.

A quest for meaning: A qualitative exploration among children with advanced cancer and their parents.

Objective: Meaning-making may assist individuals in adaptation to stressful life events, particularly bereavement. However, few studies have examined meaning-making among pediatric populations with advanced illness to understand how this process unfolds before the child's death. This study explores meaning-making pre-bereavement among children with advanced cancer and their parents.

Cognitive and Psychosocial Development in Young Children with Brain Tumors: Observations from a Clinical Sample.

Survivors of pediatric brain tumor (BT) are known to be at risk for developing cognitive and psychosocial late effects. Young age at treatment (≤6 years) is typically considered to put patients at increased risk. However, there is limited research specifically exploring functioning in these young patients.

Early Cognitive and Adaptive Functioning of Clinically Referred Infants and Toddlers with Cancer.

Many children with cancer are diagnosed during infancy and toddlerhood (< 3 years of age), potentially resulting in disrupted and/or missed developmental opportunities. Our objective was to describe the functioning of infants and toddlers with cancer who were clinically referred for evaluation at a hospital-based psychology clinic. Data from 29 very young children with cancer (M = 23.

Psychosocial Functioning of Young Children Treated for Cancer: Findings From a Clinical Sample.

Objectives: Many pediatric cancers are diagnosed in early childhood, a time of significant growth and development that lays the foundations for overall adjustment and functioning. The objective of this article was to characterize the psychosocial functioning of young children with cancer.

Method: Data from a sample of young children with cancer ( N = 92) who completed a psychological evaluation that included the Behavior Assessment Scale for Children-second edition (BASC-2) parent report were abstracted from the medical record.

Cognitive and Psychosocial Functioning of Preschool-Aged Children with Cancer.

Objective: Most children with cancer are diagnosed in early childhood, potentially resulting in missed developmental opportunities. The most common diagnoses-brain tumors, leukemia-are also associated with increased risk of neurocognitive deficits. Unfortunately, research regarding the functioning of preschool-aged children with cancer is limited.