Family Resilience From the Perspective of Caregivers of Youth With Sickle Cell Disease.

Families coping with sickle cell disease (SCD) often face heightened psychosocial risk factors, and research in pediatric SCD has often focused more on this area than resiliency factors. The aim of this study was to gain a better understanding of family resiliency in SCD based on caregiver perspectives. A secondary qualitative analysis was conducted with data from a mixed-methods study of caregivers of youth with SCD (n=22).

Family Health Leaders: Lessons on Living with Li-Fraumeni Syndrome across Generations.

Li-Fraumeni Syndrome (LFS) is a hereditary disorder that confers an approximately 90% lifetime risk of cancer and requires comprehensive lifetime cancer screening. We explored healthcare roles for managing LFS-related cancer risks and treatments that were assumed by parents, adolescents, and adult children. Semi-structured interviews were conducted with 23 families.

Couples coping with screening burden and diagnostic uncertainty in Li-Fraumeni syndrome: Connection versus independence.

Purpose: Li-Fraumeni Syndrome (LFS) is an inherited tumor predisposition syndrome with lifetime cancer risks approaching 100% and evolving risk-management strategies. This study evaluated couples' coping with LFS-related burdens.

Research Approach: Constructivist grounded theory and anticipatory loss frameworks guided design and analysis.

Describing Perceived Racial Bias Among Youth With Sickle Cell Disease.

Objectives: Sickle cell disease (SCD) predominately affects Black Americans. This is the first study of its kind to describe the racial bias experiences of youth with SCD and their reactions to these experiences.

Methods: Participants were 20 youth with SCD (ages 13-21 years) who were asked to describe any racial bias events they experienced, as recorded on the Perception of Racism in Children and Youth measure (PRaCY).

Parents' Experience of Hope When Their Child Has Cancer: Perceived Meaning and the Influence of Health Care Professionals.

Objective: This study examined the role and importance of hopefulness for parents of children with cancer, how hope relates to parents' experience with the diagnosis, and the influence nurses and other health care professionals have on parents' hope.

Method: Using an interview format, 50 parents of children diagnosed with cancer were given the Reaction to Diagnosis Interview, and asked 5 open-ended questions about hope. Answers were analyzed using content analysis.

Perceived Racial Bias and Health-Related Stigma Among Youth with Sickle Cell Disease.

Objective: Little is known about the role of perceived racial bias and health-related stigma on the health of youth with sickle cell disease (SCD). The purpose of this study was to investigate the occurrence of perceived racial bias and health-related stigma among youth with SCD and its relationship with psychological and physical well-being.

Methods: Twenty-eight youth with SCD, ages 13 to 21, were recruited from outpatient and inpatient settings at an urban children's medical center.

Chronic Pain and Obesity Within a Pediatric Interdisciplinary Pain Clinic Setting: A Preliminary Examination of Current Relationships and Future Directions.

Objectives: Pediatric obesity and chronic pain are 2 of the most significant public health crises affecting youth today. Despite the high number of youth experiencing both chronic pain and obesity, little research has been done examining their relationship. This study aims to both replicate and extend this research base.

Preliminary Outcomes of a Cross-Site Cognitive-Behavioral and Neuromuscular Integrative Training Intervention for Juvenile Fibromyalgia.

Objective: Cognitive-behavioral therapy (CBT) is effective in reducing disability among youth with juvenile fibromyalgia (FM); however, engagement in moderate to vigorous physical activity remains poor, even after CBT. The purpose of this study was to evaluate the feasibility and preliminary outcomes of an innovative program combining CBT with specialized neuromuscular exercise: the Fibromyalgia Integrative Training for Teens (FIT Teens) program.

Methods: Adolescents with juvenile FM (n = 22, all female, ages 12-18 years) from 2 urban children's hospitals participated in the 8-week FIT Teens intervention.

Pharmacogenetic Testing for Analgesic Adverse Effects: Pediatric Case Series.

Objectives: Genetic variants in pharmacokinetic genes can alter the effectiveness and increase the risks of using analgesics to treat pain. The purpose of this retrospective study is to describe the clinical experiences that led to pharmacogenetic testing of pediatric pain management program patients for alterations in the CYP2D6, CYP2C19, and CYP2C9 genes and correlate the analgesic efficacy and adverse analgesic effects with the gene-specific findings and Metabolic Reserve (MR) index.

Materials And Methods: Nineteen patients were referred for pharmacogenetic testing between February 2010 and December 2013 due to analgesic ineffectiveness or adverse analgesic effects.

Parents' Experience With Their Child's Cancer Diagnosis: Do Hopefulness, Family Functioning, and Perceptions of Care Matter?

Objectives: This study assessed the experience of parents who have a child diagnosed with cancer and whether parental hope, family functioning, and perceptions of care distinguish those parents who have adapted to the diagnosis versus those who have not adapted.

Methods: Fifty parents completed an interview about the diagnosis experience and questionnaires about hopefulness, family functioning, and family-centered care.

Results: A majority of parents had come to terms with the diagnosis; however, a subset indicated feeling emotionally disengaged from the experience and having persistent thoughts about why this had happened to them.