Evidence-based interventions for survivors of childhood cancer and their families

OBJECTIVE: To summarize existing empirical reports of psychological interventions for children with cancer and their families and to outline directions for future work. METHODS: Research accomplishments related to four areas were summarized: understanding and reducing procedural pain; realizing long-term consequences; appreciating distress at diagnosis and over time; and knowing the importance of social relationships. Recommendations for future research in this field were discussed in three domains: balancing competence and psychopathology; integrating research-based interventions into clinical care; future directions). RESULTS AND CONCLUSIONS: Interventions related to procedural pain and distress have strong empirical support. Although most survivors of childhood cancer and their families adjust quite well as they complete treatment, evidence-based interventions during and after treatment that address cancer-specific sequelae represent important growing areas of work. In the future, the development of interventions to address emerging survivorship issues will be vital, and theoretically grounded, evidence-based pragmatic interventions will be necessary.     

To disclose,or not to disclose? Context matters

Progress in understanding childhood disease using next-generation sequencing (NGS) portends vast improvements in the nature and quality of patient care. However, ethical questions surrounding the disclosure of incidental findings (IFs) persist, as NGS and other novel genomic technologies become the preferred tool for clinical genetic testing. Thus, the need for comprehensive management plans and multidisciplinary discussion on the return of IFs in pediatric research has never been more immediate. The aim of this study is to explore the views of investigators concerning the return of IFs in the pediatric oncology research context. Our findings reveal at least four contextual themes underlying the ethics of when, and how, IFs could be disclosed to participants and their families: clinical significance of the result, respect for individual, scope of professional responsibilities, and implications for the healthcare/research system. Moreover, the study proposes two action items toward anticipatory governance of IF in genetic research with children. The need to recognize the multiplicity of contextual factors in determining IF disclosure practices, particularly as NGS increasingly becomes a centerpiece in genetic research broadly, is heightened when children are involved. Sober thought should be given to the possibility of discovering IF, and to proactive discussions about disclosure considering the realities of young participants, their families, and the investigators who recruit them.     

Commentary: psychosocial functioning of children and adolescents surviving cancer: the junior investigators' perspective

In their articles, Patenaude and Kupst (2005) and Kazak (2005)have aptly provided the next generation of pediatric psycho-oncologistswith not only a thorough review of how far we have come butalso a direction for future research in the field of pediatricpsycho-oncology. Patenaude and Kupst highlight that althoughsubstantial progress has been made in a relatively short period,we are only beginning to understand what the psychosocial needsof patients and their families are and how to address them.In both articles, the authors comment that as methods of treatmentfor cancer have improved and as length of survival has increased,the needs of children and families have changed. For instance,Kazak points out that advances in pharmacological treatmentsfor pain management have decreased the need among some patientsfor traditional cognitive behavioral therapy for pain management.Patenaude and Kupst point out     

Mental health aspects of emergency medical services for children: summary of a consensus conference.

OBJECTIVE: To address the mental health needs of children involved in emergency medical services (EMS). METHODS: A multidisciplinary consensus conference convened to identify mental health needs of children and their families related to pediatric medical emergencies, to examine the impact of psychological aspects of emergencies on recovery and satisfaction with care, and to delineate research questions related to mental health aspects of medical emergencies involving children. RESULTS: The consensus group found that psychological and behavioral factors affect physical as well as emotional recovery after medical emergencies. Children's reactions are critically affected by age and developmental level, characteristics of the emergency medical event, and parent reactions. As frontline health care providers, EMS staff members are in a pivotal position to recognize and effectively manage the mental health needs of patients and their families. CONCLUSIONS: Ecological changes in emergency departments, such as linkages to mental health follow-up services, training of EMS providers and mental health professionals, and focused research that provides an empirical basis for practice, are necessary components for improving current standards of health care.     

A meta-analysis of the effects of psychological interventions in pediatric oncology on outcomes of psychological distress and adjustment

OBJECTIVE: To estimate the effectiveness of psychological interventions in pediatric oncology on decreasing psychological distress and increasing psychological adjustment using meta-analytic methods. METHODS: A meta-analysis was conducted on 12 psychological intervention studies in pediatric oncology using a weighted least squares (WLS) approach and random effect models. RESULTS: Effect sizes significantly different from zero were found for parent distress (mean = 0.35, 95% CI = 0.20-0.49, n = 7) and parent adjustment (mean = 0.23, 95% CI = 0.07-0.40, n = 5). Effect sizes for child distress, child adjustment, parent-reported child distress, and parent-reported child adjustment were not significantly different from zero. CONCLUSIONS: Psychological interventions in pediatric oncology show promise in decreasing distress and improving the adjustment of parents of children with cancer but may have minimal effects for child outcomes. Methodological issues of intervention research are discussed.     

Introduction to the Special Issue: Time for Family-Based Interventions in Pediatric Psychology?

From its very inception, pediatric psychology has been committedto involving the whole family in the service of treating children.Yet, in many respects family-based interventions are still intheir infancy. Recently, Kazak and colleagues presented a modelof family systems practice in pediatric psychology (Kazak, Simms,& Rourke, 2002). They introduce their article with the statement"We write this article reflecting on the lack of establishedfamily intervention approaches in pediatric psychology" (p.133). In the same issue of the Journal of Pediatric Psychology,Brown’s presidential address calls for greater attentionto social ecologies and the reciprocal influence of childrenand families (Brown, 2002).     

Experiences of children with trisomy 18 referred to pediatric palliative care services on two continents

Children with trisomy 18 that survive beyond the neonatal period have multiple congenital anomalies, neurodevelopmental disability, and high mortality rates. The experience of children with trisomy 18 who receive pediatric palliative care services is largely unknown. We conducted a retrospective review of children with trisomy 18 receiving pediatric palliative care services at both Boston Children's Hospital, USA and Great Ormond Street Hospital, UK from January 1, 2004 to January 1, 2015. Fifty‐eight children with trisomy 18 were referred to pediatric palliative care, 38 in the United Kingdom, 20 in the United States. Median age at referral was 19 days (2–89) in the United Kingdom, and 25 days (1–463) in the United States. Median length of time being followed by pediatric palliative care was 32 days (1–1,637) in the United Kingdom and 67 days (3–2,442) in the United States. The only significant difference in the two cohorts (p = .001) was in likelihood of receiving cardiac surgical intervention—37% in the United States, 0% the United Kingdom. Children with trisomy 18 receive pediatric palliative care services, with variable age at referral and for a variable length of time. Further research is needed to understand the experience of children with trisomy 18 and their families receiving pediatric palliative care services.     

Patient-reported outcomes in end-of-life research in pediatric oncology

OBJECTIVE: The purpose of this review of published literature was to identify the number and focus of empirically based papers that included research methods used to directly solicit patient-reported outcomes (PRO) from pediatric oncology patients at end of life. METHODS: Key terms including "pediatric or child and oncology or cancer and end of life or palliative or hospice or dying" were used with five data bases (PubMed, Ovid, Cochrane, PsycInfo & PsycArticles, and CINAHL) for English language literature published between January, 2001 and June, 2006. All retrieved documents were independently reviewed by a panel of six (nurses, physicians, and one psychologist) with backgrounds in pediatric oncology. RESULTS: Thirty-five publications were identified but nine (25.7%) were eliminated from the analysis as they did not meet inclusion criteria. Of the remaining 26, four (15.4%) included patient-reported outcomes, six (23.1%) included parent only-reported outcomes, and five (19.2%) included staff only-reported outcomes. Nine (34.6%) were retrospective medical record reviews. Two (7.7%) included parent and record review data or parent and physician reports. CONCLUSIONS: Empirically-based end-of-life publications in pediatric oncology are relatively few in number and nearly 85% of completed studies do not include PRO.     

Parent and family factors associated with child adjustment to pediatric cancer

OBJECTIVE: To identify factors that influence the association between parent and child distress among families of children with cancer and comparison peers. METHODS: Parent and child distress, social support, and family environment were assessed among families of 95 children with cancer (94 mothers, 67 fathers) and 98 comparison peers (97 mothers, 77 fathers). RESULTS: Significant associations were found between parent and child distress. For models examining the impact of fathers' distress on children, several moderators were identified (i.e., family environment, child age and gender, a cancer diagnosis, and treatment severity). Family environment also partially mediated father and child distress. CONCLUSIONS: Children whose parents were distressed were more likely to be distressed themselves. Subgroups of children were particularly vulnerable, indicating a need to identify further mechanisms of risk and resilience and to develop family-based interventions. Support was found for including fathers as independent sources of information in pediatric psychology research and clinical practice.     

Facilitating Family Coping with Childhood Cancer

The author's experiences on a pediatric oncology unit are usedto describe how to help families cope with childhood cancer.The importance of time as an organizing pivot is discussed.It is suggested that the therapist act as a family facilitatorrather than as a parent surrogate to the child. Four specifictypes of intervention are described, including the facilitationof communication, being available on an ongoing basis, "givingpermission" to the parents to use that availability, and modellingskills for the parents to use with their children.     

Program Considerations in Comprehensive Care of Chronically Ill Children

This paper focuses on four areas of program development in meetingcomprehensive care needs of children with chronic illness andtheir families: Case consultation, liaison, research, and trainingare presented as integral parts of the collaboration processbetween medicine and psychology. Potential differences in thecollaborative process are noted, and corrective strategies aresuggested. Emphasis in case consultation and research is placedon understanding the overlooked phenomenon of successful adaptationof chronically ill children and their families. Training requirementsare specified as extending beyond traditional clinical childpsychology and pediatric psychology. There is need for prototypicalpsychosocial programs in comprehensive care for this underservedpopulation.     

Using disablement models and clinical outcomes assessment to enable evidence-based athletic training practice, part I: disablement models

OBJECTIVE: To present and discuss disablement models and the benefits of using these models as a framework to assess clinical outcomes in athletic training. BACKGROUND: Conceptual schemes that form the basic architecture for clinical practice, scholarly activities, and health care policy, disablement models have been in use by health care professions since the 1960s. Disablement models are also the foundation for clinical outcomes assessment. Clinical outcomes assessment serves as the measurement tool for patient-oriented evidence and is a necessary component for evidence-based practice. DESCRIPTION: Disablement models provide benefits to health professions through organization of clinical practice and research activities; creation of a common language among health care professionals; facilitation of the delivery of patient-centered, whole-person health care; and justification of interventions based on a comprehensive assessment of the effect of illness or injury on a person's overall health-related quality of life. Currently, the predominant conceptual frameworks of disability in health care are those of the National Center for Medical Rehabilitation Research and the World Health Organization. Disablement models need to be understood, used, and studied by certified athletic trainers to promote patient-centered care and clinical outcomes assessment for the development of evidence-based practice in athletic training. CLINICAL AND RESEARCH ADVANTAGES: For clinicians and researchers to determine effective athletic training treatments, prevention programs, and practices, they must understand what is important to patients by collecting patient-oriented evidence. Patient-oriented evidence is the most essential form of outcomes evidence and necessitates an appreciation of all dimensions of health, as outlined by disablement models. The use of disablement models will allow the athletic training profession to communicate, measure, and prioritize the health care needs of patients, which will facilitate organized efforts aimed at assessing the quality of athletic training services and practices and ultimately promote successful evidence-based athletic training practice.     

Exploring collaboration between clinicians and parents to optimize pediatric weight management

Objective

To explore the understanding of collaboration between clinicians working in pediatric weight management and parents of overweight children.

Methods

Clinicians (n = 12) and parents (n = 8) seeking pediatric weight management care participated in semi-structured focus groups or individual interviews. A family-centered, collaborative model of care was used to frame the data and develop codes/themes for analysis. Member checking and external reviews were conducted to verify emergent themes.

Results

Analyses revealed that collaboration between clinicians and parents included a positive therapeutic relationship, negotiation of health care delivery, and regular monitoring and evaluation. These elements are consistent with a philosophy of family-centered care, emphasize the importance of tailoring health services to families’ needs, respect parents as experts, and identify clinician responsiveness as pivotal to partnerships with families. Parents described dissatisfaction with care and a lower likelihood of seeking future care when clinicians deviated from these principles.

Conclusion

Results suggest that pediatric weight management should be family-centered to give parents the opportunity to actively engage in health services and negotiate their family's care.

Practice implications

Clinicians may be able to optimize their interactions with families seeking pediatric weight management care by taking a family-centered approach that is individualized and responsive to families’ needs.     

Brief Report: Acceptance of Behavioral Interventions for Children With Cancer: Perceptions of Parents, Nurses, and Community Controls

Objective: To examine the treatment acceptability of behavioralinterventions targeting noncompliance in children with cancer,in medical versus general situations. Methods: Participants included 40 parents of children on activemedical treatment for cancer, 42 pediatric oncology nurses,and 34 parents of medically healthy children. After readinga clinical vignette, participants rated the acceptability offive behavioral interventions via the Treatment Evaluation Inventory-ShortForm. Results: Positive reinforcement, response cost, and reprimandgenerally were perceived as moderately acceptable. Overcorrectionwas perceived as unacceptable by all groups. Compared with nursesand parents of medically well children, parents of childrenwith cancer provided significantly lower acceptability ratingsfor response cost and time-out, two of the punitive strategiesstudied. Conclusions: Results suggest that clinicians should assess theacceptability of specific treatments prior to intervening. Methodsfor enhancing acceptability should be explored in future research.     

Introduction to the Special Section: Disadvantaged Children and Families

Provides an overview of some of the outstanding issues confronting psychologists and other health service providers involved in the treatment of disadvantaged children and families. The diverse ways in which clinical child psychology can contribute to enhanced care for underserved families are briefly outlined and exemplified by reference to articles included in this section. A call is issued for an intensified effort by clinical child psychologists to ensure that services to such children and families constitute a priority for future research, advocacy, and service system change efforts.     

Using disablement models and clinical outcomes assessment to enable evidence-based athletic training practice, part II: clinical outcomes assessment

OBJECTIVE: To provide an overview of clinical outcomes assessment, discuss the classification of outcomes measures, present considerations for choosing outcomes scales, identify the importance of assessing clinical outcomes, and describe the critical link between the utilization of disablement models and clinical outcomes assessment. BACKGROUND: Clinical outcomes are the end result of health care services. Clinical outcomes assessment is based on the conceptual framework of disablement models and serves as the measurement method for the collection of patient-oriented evidence, a concept central to evidence-based practice. DESCRIPTION: Clinical outcomes management refers to the use of outcomes measures in the course of routine clinical care and provides athletic trainers with a mechanism to assess treatment progress and to measure the end results of the services they provide. Outcomes measures can be classified as either clinician based or patient based. Clinician-based measures, such as range of motion and strength, are taken directly by clinicians. Patient-based measures solicit a patient's perception as to health status in the form of questionnaires and survey scales. Clinician-based measures may assist with patient evaluation, but patient-based measures should always be included in clinical assessment to identify what is important to the patient. CLINICAL AND RESEARCH ADVANTAGES: Evidence-based athletic training practice depends on clinical outcomes research to provide the foundation of patient-oriented evidence. The widespread use of clinical outcomes assessment, based on the disablement model framework, will be necessary for athletic trainers to demonstrate the effectiveness of therapies and interventions, the provision of patient-centered care, and the development of evidence-based practice guidelines.     

Adaptive style and symptoms of posttraumatic stress in children with cancer and their parents

OBJECTIVE: To examine symptom levels of posttraumatic stress (PTS) in children with cancer and their parents as a function of patient and parent adaptive style. METHOD: Participants included 162 pediatric cancer patients and their parents. Patients completed self-report measures of PTS and adaptive style. Parents reported on their own adaptive style and PTS, as well as levels of PTS in their child. RESULTS: Adaptive style was a significant correlate of PTS. Children identified as low anxious (LA) or repressors (REP) obtained lower levels of PTS than did high anxious (HA) children, both by self-report and parent report. Parents identified as LA or REP self-reported lower levels of PTS than HA and also reported lower levels of PTS in their children. CONCLUSIONS: Patient and parent adaptive style are significant determinants of PTS in the pediatric oncology setting. These findings, in combination with the generally low levels of PTS in the pediatric oncology population, raise questions about the utility of the posttraumatic stress model for understanding the experiences of children with cancer, although such a model may be more applicable to parental response.