A Contextual Family/Systems Approach to Pediatric Psychology: Introduction to the Special Issue

Introduced the special issue on "Family System in PediatricPsychology" by organizing the papers around a series of themesrelevant to understanding families in pediatric psychology.Themes reflect the relationships between parent and child adjustment,family subsystems, legacies and traditions, social support systems,family interventions, the constancy of change in families, thechallenges of conducting longitudinal research, the inclusionof fathers, and the importance of a competency framework inpediatric family psychology. The paper concludes with recommendationsfor pediatric family psychology, including suggestions for increasingdiversity, expanding methodological approaches, and enhancingfamily competence.     

Society of pediatric psychology task force report: recommendations for the training of pediatric psychologists

OBJECTIVE: To provide an overview of the types of training experiences considered most important to the development of competency in pediatric psychology. METHODS: This is the work of a task force commissioned by the Society of Pediatric Psychology, Division 54 of the American Psychological Association. RESULTS: Twelve topic areas, adapted from Roberts et al. (1998), deemed important for obtaining knowledge and expertise in pediatric psychology, were identified. These topics include life span developmental psychology; life span developmental psychopathology; child, adolescent, and family assessment; intervention strategies; research methods and systems evaluation; professional, ethical, and legal issues pertaining to children, adolescents, and families; issues of diversity; the role of multiple disciplines in service-delivering systems; prevention, family support, and health promotion; social issues affecting children, adolescents, and families; consultant and liaison roles; and disease process and medical management. Each area is briefly described and recommendations for obtaining training in these areas are offered. CONCLUSIONS: The Society of Pediatric Psychology offers this document as a comprehensive review of the ideal types of training experiences most important to developing competencies in pediatric psychology. These recommendations can be used by graduate students and graduate programs in shaping a training plan for students interested in pediatric psychology training.     

Family influences on pediatric asthma

OBJECTIVE: To describe pathways by which families may influence the onset and course of a child's asthma. METHODS: We critically reviewed published articles and book chapters to identify research findings and integrated conceptualizations that demonstrate how families affect pediatric asthma. RESULTS: Family emotional characteristics, asthma management behaviors, and physiological factors account for key influences on pediatric asthma onset and outcomes. CONCLUSIONS: Multiple family characteristics are associated with pediatric asthma onset and outcomes. Behavioral and physiological mechanisms may act independently or may interact to affect asthma manifestations. Families with specific emotional characteristics may be at an elevated risk for poorer asthma outcomes.     

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.     

Impact of a Summer Camp Experience on Daily Activity and Family Interactions Among Children with Cancer

Eighteen pediatric cancer patients and their families participatedin a longitudinal study to assess the effects of a camp experienceon daily activity and family interactions. Based on maternalreport, changes were found in the amount of time these childrenspent in social, physical, and self-engaged activities. Mothersand a sibling closest in age to the patient also noted changesin their own frequency of activities spent with the family andwith others. These changes were evident when comparing measuresobtained 2 weeks prior to and 2 weeks after camp. Many changeswere still present 1 month after attending camp. These datasupport the use of a camp experience as an intervention to facilitatea return to more normal, healthy functioning by pediatric cancerpatients and their families.     

An integrative model of pediatric medical traumatic stress

OBJECTIVE: To guide assessment and intervention for patients and families, a model for assessing and treating pediatric medical traumatic stress (PMTS) is presented that integrates the literature across pediatric conditions. METHODS: A model with three general phases is outlined--I, peritrauma; II, early, ongoing, and evolving responses; and III, longer-term PMTS. Relevant literature for each is reviewed and discussed with respect to implications for intervention for patients and families. RESULTS: Commonalities across conditions, the range of normative responses to potentially traumatic events (PTEs), the importance of preexisting psychological well-being, developmental considerations, and a social ecological orientation are highlighted. CONCLUSIONS: Growing empirical support exists to guide the development of assessment and intervention related to PMTS for patients with pediatric illness and their parents. The need for interventions across the course of pediatric illness and injury that target patients, families, and/or healthcare teams is apparent. The model provides a basis for further development of evidence-based treatments.     

Psychological practice in a pediatric rehabilitation hospital

Described 127 consecutive referrals to a newly formed psychological consultation service in a pediatric rehabilitation hospital. This setting served children whose needs for comprehensive care and long-term hospitalization could not be met effectively elsewhere in the community. The complex patient population included children with permanent mental and/or physical handicaps who had survived due to advances in medical technology, those with traumatic or congenital brain injury, failure to thrive, feeding problems, apnea, tracheostomy, child abuse, and psychosomatic disorders. A range of psychological services were offered, including specialized assessments and treatment planning for rehabilitation, home and school placement, direct treatment and monitoring of behavioral progress, and consultation with staff. Implications for the practice of pediatric psychology and service delivery to patients in pediatric rehabilitation settings are discussed.     

Sociocultural issues in pediatric transplantation: a conceptual model

OBJECTIVE: To demonstrate the value of viewing the pediatric transplant experience through a sociocultural lens and to offer an organized framework for identifying influential sociocultural variables in pediatric transplantation. METHODS: A conceptual model is presented which organizes sociocultural factors that may influence the transplant process. A review of the pediatric and adult transplant literature is conducted. RESULTS: The need for a model addressing sociocultural issues and benefits of using the proposed model is evident. Guided by the proposed model, pediatric psychologists will be prepared to more readily attend to sociocultural influences associated with the transplant experience when conducting research or providing clinical services to patients and families. CONCLUSIONS: Further development and evaluation of the proposed model are necessary to investigate its practical utility and validate the influence of the identified variables on assessment and treatment of pediatric transplant patients as well as patient health outcomes.     

Evidence-based assessment, intervention and psychosocial care in pediatric oncology: a blueprint for comprehensive services across treatment

OBJECTIVE: This paper describes the translation of psychological research into clinical services in pediatric oncology, based on two decades of research and clinical services in the Division of Oncology at The Children's Hospital of Philadelphia (CHOP). METHOD: Two models helpful in conceptualizing clinical care underlying intervention work at CHOP are summarized: The Pediatric Psychosocial Preventative Health Model (PPPHM; Kazak, 2006) and the Medical Traumatic Stress Model, specific to pediatric illness and injury (Kazak, Kassam-Adams et al., 2006). RESULTS: Integration of these two models offers a "blueprint" for development and evaluation of services to children with cancer and their families relevant for all families across the complete spectrum of disease and treatment. CONCLUSION: The dissemination of evidence-based psychosocial practice in pediatric oncology remains a large and challenging goal. The proposed blueprint may facilitate collaborative work to help assure that children with cancer and their families have access to evidence-based care.     

Family Context in Pediatric Psychology: A Transactional Perspective

The degree to which the family is seen as a significant contributorto child health conditions impacts directly on the successfulfunctioning of the pediatric psychologist. A transactional modelof family functioning is proposed for pediatric psychology.Development is considered to be the result of a three-part processthat starts with child behavior that triggers family interpretationthat produces a parental response. Family interpretation ispresented as part of a regulatory system that includes familyparadigms, family stories, and family rituals. Correspondingto the proposed three-part regulation model, three forms ofintervention are discussed: remediation, redefinition, and reeducation.Clinical decision making based on this model is outlined withexamples given from different treatment approaches. Implicationsfor the treatment of families in pediatric psychology are discussed.     

Training in pediatric psychology: a survey of predoctoral internship programs

OBJECTIVE: To describe internship training in pediatric psychology and to determine its correspondence with the recommendations of the Society of Pediatric Psychology (SPP) Task Force on Training. METHODS: A survey based on the Task Force recommendations was sent to all internship programs that reported offering a major rotation in pediatrics. RESULTS: Opportunities in a wide range of assessment and intervention strategies were available. Training in disease process, medical management, and consultation/liaison with a variety of disciplines was also offered. Interns interacted with individuals from a range of developmental stages and ethnicities. Many professional issues were addressed. Experiences in research methods and prevention were less well represented. CONCLUSIONS: Despite some variability, experiences in a wide range of areas were offered by many programs in several of the training domains recommended by the SPP Task Force. However, there is room for improvement in training in research and prevention and health promotion.     

Clinical genetics issues encountered by family physicians.

PURPOSE: To describe the genetics-related clinical issues encountered by family physicians, and the medical problems they referred to genetics consultants. METHODS: Questionnaires were mailed to a nationwide, random sample of 498 practicing family physicians, asking how many times in the past year they discussed genetic information about 19 familial or genetic conditions with patients and what proportion of the families with each genetic condition were referred for genetics consultation. Factor analysis was used to group the conditions. RESULTS: The response rate was 38% (n = 190). Respondents were similar to non-respondents except that more were women. Most family physicians reported discussing the genetics of common cancers, cardiovascular disease, and Alzheimer's disease with two or more patients in the past year. Thirteen percent had referred families for genetics assessment of breast-ovarian cancer but only two made genetics referrals for cardiovascular disease or dementia. 25% to 50% of family physicians had addressed genetic issues in at least one family with hemoglobinopathy, a blood clotting disorder, hemochromatosis, mental illness, vision loss or deafness, chromosome abnormality, infertility or pregnancy loss, congenital anomalies, mental retardation, and neurofibromatosis. Most cases were not referred to geneticists. Of respondents, 23% said that genetics consultation is very difficult to obtain or unavailable and 18% listed ethical and social dilemmas related to pursuing genetic diagnosis. CONCLUSION: Nationwide, family physicians address a variety of genetics issues with patients, most frequently consulting geneticists for perinatal conditions and familial cancers. Access to genetics consultation is more difficult in rural areas. These data may be used in organizing genetics services and in planning professional education programs for primary care clinicians.     

Inpatient pediatric consultation-liaison: a case-controlled study

OBJECTIVE: To conduct a prospective case-controlled study of pediatric inpatients referred for consultation in a tertiary care children's medical center. METHOD: Referrals (n = 104) were matched with nonreferrals (n = 104) for age (4 to 18 years), gender, and illness type/severity and completed parent- and self-report (dependent on age) behavioral rating scales to assess for adjustment/functioning. Nurses completed in-hospital ratings of behavioral/adjustment difficulties. Goal attainment and satisfaction ratings were obtained from the referring physicians, parents/guardians, and the consultant. RESULTS: Referrals exhibited more behavior/adjustment/coping difficulties than nonreferrals by parent, nurse, and self report. Frequently employed interventions included coping-strategies intervention, cognitive and behavioral therapies, and case management. Referring physician and consultant ratings of goal attainment were high, as were physician ratings of satisfaction and parent/guardian ratings of overall helpfulness. CONCLUSIONS: Pediatric inpatients referred by their physicians had significantly more internalizing and externalizing disturbances than their nonreferred hospitalized peers. Many of the behavioral and adjustment problems that lead to in-hospital consultation referral were evident in global behavior difficulties prior to hospitalization. Referring pediatricians, parents/guardians, and consultants rate the outcome as benefiting the patients via assisting in the overall management of their health concerns, coping, and adjustment.     

The role of effective communication with children and their families in fostering adherence to pediatric regimens

Adherence to pediatric health enhancement, disease prevention, and medical treatment, particularly for chronic disease, can be challenging because of demanding regimens, children's progressing developmental stages, and varying family perspectives and relationships. This review examines adherence in the context of communication among providers, pediatric patients, and their families. The focus is on: the delivery of prevention and treatment information; trust in the therapeutic relationship; beliefs and attitudes in shaping acceptance of health care messages; social and cultural norms; building patient and family commitment to behavior change; family habits; barriers and pressures faced by patients and their families; the role of social networks and social support in fostering adherence, and the effects of family cohesiveness and family conflict. The unique challenges of fostering preventive health care and treatment for chronic disease in the context of transition to adolescence are also considered, and effective clinical solutions are reviewed.     

The clinical and genetic epidemiology of neuronal ceroid lipofuscinosis in Newfoundland

The neuronal ceroid lipofuscinoses (NCLs) are the commonest neurodegenerative disorders of children. The aims of this study were to determine the incidence of NCL in Newfoundland, identify the causative genes, and analyze the relationship between phenotype and genotype. Patients with NCL diagnosed between 1960 and 2005 were ascertained through the provincial genetics and pediatric neurology clinics. Fifty-two patients from 34 families were identified. DNA was obtained from 28/34 (82%) families; 18 families had mutations in the CLN2 gene, comprising five different mutations of which two were novel. One family had a CLN3 mutation, another had a novel mutation in CLN5 , and five families shared the same mutation in CLN6 . One family was misdiagnosed, and in two, molecular testing was inconclusive. Disease from CLN2 mutations had an earlier presentation (p = 0.003) and seizure onset (p < 0.001) compared with CLN6 mutation. There was a slower clinical course for those with CLN5 mutation compared with CLN2 mutation. NCL in Newfoundland has a high incidence, 1 in 7353 live births, and shows extensive genetic heterogeneity. The incidence of late infantile NCL, 9.0 per 100,000 (or 1 in 11,161) live births, is the highest reported in the world.     

Psychometric properties of a new measure of fathers' involvement in the management of pediatric chronic diseases

OBJECTIVE: Despite theoretical and empirical reasons suggesting its potential importance, paternal involvement in the management of pediatric chronic diseases has rarely been a primary focus of research on family adaptation to pediatric disease. This may be due to a lack of appropriate tools to measure relevant behaviors. This study assessed the reliability and validity of the Dads' Active Disease Support scale (DADS), which was designed to measure male and female caregivers' estimates of the amount and helpfulness of paternal involvement in managing six pediatric chronic diseases. METHOD: A sample of 224 heterosexual couples completed the DADS and measures of mother, child, and family functioning, yielding 190 who completed data sets. Of these, 91 mothers and 88 fathers completed the DADS again after a 1-month interval. RESULTS: Results confirmed DADS internal consistency, test-retest reliability, and interparent agreement. Confirmatory factor analysis supported its construct validity: A two-factor model (amount and helpfulness of fathers' involvement) best accounted for participants' responses. Significant correlations with scores on the Family Assessment Device supported DADS convergent validity. DADS scores of mothers and fathers suggest substantial room for improvement in both the amount and the helpfulness of paternal involvement in disease management. Mothers provided significantly higher ratings of the helpfulness of fathers' involvement than did fathers. CONCLUSIONS: The DADS appears to be a reliable and valid measure for studies of the associations between paternal involvement in disease management and child, maternal, and family adaptation to pediatric chronic medical conditions.     

Parent satisfaction with the electronic medical record in an academic pediatric rheumatology practice

Background

Patient satisfaction has not been widely studied with respect to implementation of the electronic medical record (EMR). There are few reports of the impact of the EMR in pediatrics.

Objective

The objective of this study was to assess the impact of implementation of an electronic medical record system on families in an academic pediatric rheumatology practice.

Methods

Families were surveyed 1 month pre-EMR implementation and 3 months post-EMR implementation.

Results

Overall, EMR was well received by families. Compared with the paper chart, parents agreed the EMR improved the quality of doctor care (55% or 59/107 vs 26% or 26/99, P < .001). More parents indicated they would prefer their pediatric physicians to use an EMR (68% or 73/107 vs 51% or 50/99, P = .01).

Conclusions

Transitioning an academic pediatric rheumatology practice to an EMR can increase family satisfaction with the office visit.     

3D打印技术在儿童放射治疗定位头枕设计中的应用

目的:利用3D打印技术设计出一款既能提高儿童患者舒适性,又能提高放疗摆位精度的头枕。方法:以3至7岁中国儿童头颅大小为基础,并与博医来标准头枕模型相结合,利用3D打印技术,设计出一款适用于3至7岁儿童的放疗头枕。随机将30例3至7岁儿童头部肿瘤患者分为研究组和对照组,每组各15例。研究组采用3D打印放疗头枕加热塑膜联合固定,对照组则采用博医来标准头枕加热塑膜联合固定。记录研究组与对照组的单次照射透射率及两组儿童患者放疗过程中LAT（X）、LNG（Y）、VRT（Z）及3D矢量方向的位移误差,并采用Mann-Whitney U检验分析比较两组数据,以评估3D打印放疗头枕效果。结果:在VRT及3D矢量方向,研究组与对照组间的位移误差具有统计学意义（VRT方向:P<0.001;3D矢量方向:P=0.023）,而在LAT及LNG方向,研究组与对照组间的位移误差无统计学意义（LAT方向:P=0.950;LNG方向:P=0.137）。结论:本研究提出的3D打印放疗头枕能有效减小VRT及3D矢量方向的位移误差,同时提高儿童放疗过程中的舒适性。     

Family mealtime interactions and overweight children with asthma: potential for compounded risks?

OBJECTIVE: Exploratory study aimed to examine differences in family interaction patterns during a routine mealtime between overweight, at-risk for overweight, and average weight children with asthma. METHODS: Eighty families of children with asthma, aged 5-12 years, were videotaped during a mealtime in their homes. The videotapes were rated using the McMaster Mealtime Family Interaction Coding System (MICS). Structural aspects of the meal such as presence of sugary drinks and whether the television was on were also coded. RESULTS: Significant differences were found on the MICS with families of children with asthma who were overweight scoring lower on task accomplishment, affect management, interpersonal involvement, and roles. Families of overweight children with asthma also displayed an increased presence of sugary beverages, shorter meal length, and fewer adults at the table. CONCLUSIONS: Preliminary findings suggest that families with children with asthma who are overweight may have a more difficult time managing mealtimes and feel overwhelmed by this family routine.