Anne E. Kazak

Standards for the Psychosocial Care of Children With Cancer and Their Families: An Introduction to the Special Issue

Pediatric oncology psychosocial professionals collaborated with an interdisciplinary group of experts and stakeholders and developed evidence‐based standards for pediatric psychosocial care. Given the breadth of research evidence and traditions of clinical care, 15 standards were derived. Each standard is based on a systematic review of relevant literature and used the AGREE II process to evaluate the quality of the evidence. This article describes the methods used to develop the standards and introduces the 15 articles included in this special issue. Established standards help ensure that all children with cancer and their families receive essential psychosocial care. Pediatr Blood Cancer

Systematic Review: A Reevaluation and Update of the Integrative (Trajectory) Model of Pediatric Medical Traumatic Stress

OBJECTIVEnThe objective of this systematic review is to reevaluate and update the Integrative Model of Pediatric Medical Traumatic Stress (PMTS; Kazak et al., 2006), which provides a conceptual framework for traumatic stress responses across pediatric illnesses and injuries.nnnMETHODSnUsing established systematic review guidelines, we searched PsycINFO, Cumulative Index to Nursing and Allied Health Literature, and PubMed (producing 216 PMTS papers published since 2005), extracted findings for review, and organized and interpreted findings within the Integrative Model framework.nnnRESULTSnRecent PMTS research has included additional pediatric populations, used advanced longitudinal modeling techniques, clarified relations between parent and child PMTS, and considered effects of PMTS on health outcomes. Results support and extend the models five assumptions, and suggest a sixth assumption related to health outcomes and PMTS.nnnCONCLUSIONSnBased on new evidence, the renamed Integrative Trajectory Model includes phases corresponding with medical events, adds family-centered trajectories, reaffirms a competency-based framework, and suggests updated assessment and intervention implications.

Psychosocial Assessment as a Standard of Care in Pediatric Cancer

This paper presents the evidence for a standard of care for psychosocial assessment in pediatric cancer. An interdisciplinary group of investigators utilized EBSCO, PubMed, PsycINFO, Ovid, and Google Scholar search databases, focusing on five areas: youth/family psychosocial adjustment, family resources, family/social support, previous history/premorbid functioning, and family structure/function. Descriptive quantitative studies, systematic reviews, and meta‐analyses (nu2009=u2009149) were reviewed and evaluated using grading of recommendations, assessment development, and evaluation (GRADE) criteria. There is high quality evidence to support a strong recommendation for multifaceted, systematic assessments of psychosocial health care needs of youth with cancer and their families as a standard of care in pediatric oncology. Pediatr Blood Cancer

Social competence in pediatric brain tumor survivors: application of a model from social neuroscience and developmental psychology.

Pediatric brain tumor (BT) survivors are at risk for psychosocial late effects across many domains of functioning, including neurocognitive and social. The literature on the social competence of pediatric BT survivors is still developing and future research is needed that integrates developmental and cognitive neuroscience research methodologies to identify predictors of survivor social adjustment and interventions to ameliorate problems. This review discusses the current literature on survivor social functioning through a model of social competence in childhood brain disorder and suggests future directions based on this model. Interventions pursuing change in survivor social adjustment should consider targeting social ecological factors. Pediatr Blood Cancer 2015;62:375–384.

Family Rituals and Quality of Life in Children With Cancer and Their Parents: The Role of Family Cohesion and Hope

OBJECTIVEnFamily rituals are associated with adaptive functioning in pediatric illness, including quality of life (QoL). This article explores the role of family cohesion and hope as mediators of this association in children with cancer and their parents.nnnMETHODSnPortuguese children with cancer (Nu2009=u2009389), on- and off-treatment, and one of their parents completed self-report measures. Structural equation modeling was used to examine direct and indirect links between family rituals and QoL.nnnRESULTSnWhen children and parents reported higher levels of family rituals, they also reported more family cohesion and hope, which were linked to better QoL. At the dyadic level, childrens QoL was related to parents family rituals through the childs family cohesion. This model was valid across childs age-group, treatment status, and socioeconomic status.nnnCONCLUSIONSnFamily rituals are important in promoting QoL in pediatric cancer via family cohesion and hope individually and via family cohesion in terms of parent-child interactions.

Relationship between sleep problems and psychological outcomes in adolescent and young adult cancer survivors and controls

PurposeHow cancer history and distress relate to sleep outcomes of adolescents and young adults (AYAs) is unclear. The current study compares AYA cancer survivors to controls on indicators of sleep and fatigue; examines the concurrent association between psychological status, sleep, and fatigue; and investigates the lagged relationship between sleep and fatigue problems with psychological functioning.MethodsAYA cancer survivors (nu2009=u2009167) and controls (nu2009=u2009170), ages 16 to 30, completed measures at a survivorship clinic/primary care visit (time 1) and 2xa0months later (time 2). Participants completed questions about sleep quality, quantity, sleep medication use, self-reports of sleep problems, and fatigue in addition to measures of depression, anxiety, and posttraumatic stress symptoms (PTSS).ResultsThere were no differences in sleep quantity or quality between survivors and controls, but survivors reported significantly more fatigue. Within groups, AYAs with self-reported sleep and fatigue problems reported significantly higher depression, anxiety, and PTS symptoms. Controlling for baseline depression, sleep, and fatigue problems at time 1 significantly predicted depression at time 2 in survivors but not in controls.ConclusionThis study offers important insight into the psychological functioning of childhood cancer survivors and prospectively describes sleep and fatigue as risk factors for poor psychological functioning in survivors. These findings support screening for sleep problems in AYA survivors as these difficulties are closely related to mental health functioning.

Body Image and Quality of Life in Adolescents With Craniofacial Conditions

Objective To evaluate body image in adolescents with and without craniofacial conditions and to examine relationships between body image and quality of life. Design Case-control design. Setting A pediatric hospitals craniofacial center and primary care practices. Participants Seventy adolescents with visible craniofacial conditions and a demographically matched sample of 42 adolescents without craniofacial conditions. Main Outcome Measure Adolescents completed measures of quality of life and body image including satisfaction with weight, facial and overall appearance, investment in appearance (importance of appearance to self-worth), and body image disturbance (appearance-related distress and impairment in functioning). Results Adolescents with craniofacial conditions reported lower appearance investment (P < .001) and were more likely to report concerns about facial features (P < .02) compared with nonaffected youth. Females in both groups reported greater investment in appearance, greater body image disturbance, and lower weight satisfaction compared with males (P < .01). Within both groups, greater body image disturbance was associated with lower quality of life (P < .01). The two groups did not differ significantly on measures of quality of life, body image disturbance, or satisfaction with appearance. Conclusions Body image and quality of life in adolescents with craniofacial conditions are similar to nonaffected youth. Relationships between body image and quality of life emphasize that appearance perceptions are important to adolescents’ well-being regardless of whether they have a facial disfigurement. Investment in ones appearance may explain variations in body image satisfaction and serve as an intervention target, particularly for females.

Psychological Aspects of Long-Term Survivorship

Childhood cancer survivors and their families can be surprised by the realization that cancer does not end when treatment ends and that life does not automatically return to normal. As families manage the many transitions that accompany the end of treatment, they find that cancer survivorship has its own set of medical and psychological issues. Medical visits and monitoring continue – initially for disease recurrence and then for the emergence of medical late effects – and longer-term psychological reactions emerge. For these reasons, it is more accurate to conceive of cancer survivorship as a stage in a life-long chronic illness, rather than as an acute illness that ends with “cure” or the attainment of “survivorship” status [74]. The goal of this chapter is to provide an overview of psychological late effects of childhood cancer and present guidance for managing these effects.

Parent perspectives on family-based psychosocial interventions in pediatric cancer: a mixed-methods approach

Family-based interventions in pediatric cancer face challenges associated with integrating psychosocial care into a period of intensive treatment and escalating stress. Little research has sought input from parents on the role of interventions delivered shortly after diagnosis. This mixed-methods study obtained parents perspectives on the potential role of family-based interventions. Twenty-five parents provided feedback on the structure and timing of psychosocial interventions via focus groups and a questionnaire. Qualitative analyses resulted in three themes that were illustrative of a traumatic stress framework: (1) tension between focusing on child with cancer and addressing other family needs, (2) factors influencing parents perception of a shared experience with other parents, and (3) the importance of matching interventions to the trajectory of parent adjustment. Quantitative data indicated that parents preferred intervention within 6xa0months of diagnosis, with almost half favoring within 2xa0months of diagnosis, and the majority wanted interventions targeted to parents only. Qualitative themes highlight the importance of using a traumatic stress framework to inform the development of family-based interventions for those affected by pediatric cancer.

Implementing the psychosocial standards in pediatric cancer: Current staffing and services available

Fifteen evidence‐based Standards for Psychosocial Care for Children with Cancer and Their Families (Standards) were published in 2015. The Standards cover a broad range of topics and circumstances and require qualified multidisciplinary staff to be implemented. This paper presents data on the availability of psychosocial staff and existing practices at pediatric oncology programs in the United States, providing data that can be used to advocate for expanded services and prepare for implementation of the Standards.