Kristin Bingen

Factors associated with parental activation in pediatric hematopoietic stem cell transplant

Patient activation, the extension of self-efficacy into self-management, is an essential component of effective chronic care. In pediatric populations, caregiver activation is also needed for proper disease management. This study investigates the relationships between parental activation and other characteristics of parent–child dyads (N = 198) presenting for pediatric hematopoietic stem cell transplant. Parental activation concerning their child’s health was assessed using the Parent Patient Activation Measure (Parent-PAM), a modified version of the well-validated Patient Activation Measure (PAM). Using hierarchical linear regression and following the Belsky process model for determining parenting behaviors, a multivariate model was created for parental activation on behalf of their child that showed that the parent’s age, rating of their own general health, self-activation, and duration of the child’s illness were significantly related to Parent-PAM score. Our findings characterize a potentially distinct form of activation in a parent–child cohort preparing for a demanding clinical course.

Evaluation of a Survivorship Educational Program for Adolescent and Young Adult Survivors of Childhood Cancer

Educational programs to address specific needs of adolescent and young adult (AYA) childhood cancer survivors are scarce. A quarterly speaker series and 1-day conference involved presentations by oncology experts to increase knowledge of AYA cancer survivorship issues and awareness of community programs and resources. Pre- and post-evaluations were administered to determine the programs efficacy. Most rated program satisfaction as “moderately high” to “high” and having met expectations. Self-report ratings indicated a significant increase in perceived knowledge of survivorship topics and resource awareness for AYA childhood cancer survivors and caregivers. Nearly one third attended more than one presentation, indicating that the educational program was beneficial to them. This program was effective in increasing self-reported survivorship education for AYA survivors of childhood cancer, families, and health care providers.

Communication, Documentation, and Training Standards in Pediatric Psychosocial Oncology.

As part of a larger effort to create standards for psychosocial care of children with cancer, we document consensus and evidence‐based data on interprofessional communication, documentation, and training for professionals providing psycho‐oncology services. Six databases were searched. Sixty‐five articles and six guidelines and consensus‐based documents were identified; 35 met inclusion criteria. Data support strong recommendations for standards of care in communication/collaboration, documentation of patient information, and training in pediatric psycho‐oncology. These are areas where extensive research is unlikely to be conducted; however, professional expectations and qualifications may be further clarified and strengthened with time. Pediatr Blood Cancer.

Providing Children and Adolescents Opportunities for Social Interaction as a Standard of Care in Pediatric Oncology

Experiences with peers constitute an important aspect of socialization, and children and adolescents with cancer may experience reduced social interaction due to treatment. A literature review was conducted to investigate the evidence to support a standard of care evaluating these experiences. Sixty‐four articles were reviewed using the Grading of Recommendations Assessment, Development and Evaluation (GRADE) criteria. Moderate quality of evidence suggest that social interaction can be beneficial to increase knowledge, decrease isolation, and improve adjustment and constitute an important, unmet need. The evidence supports a strong recommendation for youth with cancer to be provided opportunities for social interaction following a careful assessment of their unique characteristics and preferences.

Patient/Family Education for Newly Diagnosed Pediatric Oncology Patients Consensus Recommendations from a Children’s Oncology Group Expert Panel

There is a paucity of data to support evidence-based practices in the provision of patient/family education in the context of a new childhood cancer diagnosis. Since the majority of children with cancer are treated on pediatric oncology clinical trials, lack of effective patient/family education has the potential to negatively affect both patient and clinical trial outcomes. The Children’s Oncology Group Nursing Discipline convened an interprofessional expert panel from within and beyond pediatric oncology to review available and emerging evidence and develop expert consensus recommendations regarding harmonization of patient/family education practices for newly diagnosed pediatric oncology patients across institutions. Five broad principles, with associated recommendations, were identified by the panel, including recognition that (1) in pediatric oncology, patient/family education is family-centered; (2) a diagnosis of childhood cancer is overwhelming and the family needs time to process the diagnosis and develop a plan for managing ongoing life demands before they can successfully learn to care for the child; (3) patient/family education should be an interprofessional endeavor with 3 key areas of focus: (a) diagnosis/treatment, (b) psychosocial coping, and (c) care of the child; (4) patient/family education should occur across the continuum of care; and (5) a supportive environment is necessary to optimize learning. Dissemination and implementation of these recommendations will set the stage for future studies that aim to develop evidence to inform best practices, and ultimately to establish the standard of care for effective patient/family education in pediatric oncology.

A multimethod assessment of psychosocial functioning and late effects in survivors of childhood cancer and hematopoietic cell transplant.

Previous research in childhood cancer and hematopoietic cell transplant (HCT) survivorship has relied on the use of standardized questionnaires that assess symptoms of psychological functioning but do not sufficiently capture the cancer survivorship experience. Study aims are to quantitatively and qualitatively assess the psychosocial functioning of pediatric cancer and HCT survivors seen in a multidisciplinary survivorship clinic, determine survivorship concerns, and assess potential demographic and medical correlates of psychosocial outcomes. Data were collected using a retrospective chart review of a parent-report questionnaire of the child’s psychological functioning, responses to a semistructured interview that qualitatively assessed adjustment to life after treatment, and documented medical late effects. Results indicated the majority of survivors had healthy psychological adjustment based upon a parent-report questionnaire. However, nearly 72% of survivors reported 1 or more survivorship concerns during the interview, with the primary concerns being current and future health or physical functioning, including the possibility of cancer recurrence. A content analysis of the interview responses indicated HCT survivors had more school or cognitive functioning concerns compared with survivors who did not have an HCT. Further research should use survivorship-specific measures to better identify survivors at risk and determine the impact of late effects on their quality of life.

Three sides to a story: Child, parent, and nurse perspectives on the child's experience during hematopoietic stem cell transplantation

The experience of children undergoing hematopoietic stem cell transplantation (HSCT), including the ways in which different participants (ie, children, parents, and nurses) contribute to the overall picture of a childs experience, is poorly characterized. This study evaluated parent, child, and nurse perspectives on the experience of children during HSCT and factors contributing to interrater differences.

Children's Coping With Hematopoietic Stem Cell Transplant Stressors: Results From the Journeys to Recovery Study

Study aims were to determine types of stressors present prior to pediatric hematopoietic stem cell transplantation (HSCT) and 45 days post-HSCT, identify coping strategies used, and evaluate the perceived strategy efficacy from the patients perspective as measured by the Kidcope. Pre-HSCT, the majority of 93 participants (7–18 years) chose stressors that were classified as “psychosocial” (63% vs. 37%). At Day 45, participants selecting “medical” stressors increased from 37% to 50%. At both time points, “wishful thinking” was used most frequently, despite it being the least effective coping strategy. The most efficacious coping strategy at both time points was social support.

Growth Velocity in Pediatric Bone Marrow Transplantation: Significance of Donor Type and Treatment Factors

Children who have undergone bone marrow transplantation (BMT) often have decreased growth. Growth is a multifactorial process, and the factors that influence growth after BMT are not completely understood. The authors hypothesized that donor type may be a factor influencing growth. Sixty-five children and adolescents who underwent BMT (32 related matched, 33 unrelated matched) were evaluated. Growth velocity (height standard deviation) was assessed prior to and 2 years following BMT. The results indicated that children and adolescents who underwent unrelated matched transplants had lower growth velocity (P < .059) than those with related matched transplants. Those who received the standard conditioning regimen that included total body irradiation (TBI) had a significantly lower growth velocity (P < .045) than those with chemotherapy-only regimens. Significant correlates of growth velocity included younger age at BMT and pre-BMT growth velocity. Thus, donor type, age at BMT, prior treatment, and BMT conditioning regimens that include TBI may all affect growth post-BMT. Careful monitoring of growth velocity is required for patients who have received an unrelated donor BMT.

Pediatric Hematopoietic Stem Cell Transplantation: Psychosocial Assessment and Care

This chapter reviews the role of psychosocial providers working with children, adolescents, and young adults undergoing a hematopoietic stem cell transplant (HSCT). Special attention is given to the psychosocial domains requiring assessment during the pre-HSCT psychological evaluation, including ability to consent/assent to treatment, psychosocial functioning, medical adherence, social support and stressors, and cognitive functioning. While there are few intervention studies aimed at the HSCT population, we extrapolate from the findings of pediatric chronic illness in discussing the best multidisciplinary intervention approaches to treat procedural pain and anxiety, behavioral issues, coping with medical isolation, pill-swallowing difficulties, and treatment nonadherence. Family functioning, including parent and sibling adjustment, is given additional consideration, with an expansive review of the unique experience of sibling donors. Pediatric HSCT resources and case examples are included.