Early Identification of Barriers and Facilitators to Self-Management Behaviors in Pediatric Patients With Sickle Cell Disease to Minimize Hematopoietic Cell Transplantation Complications.

Hematopoietic cell transplantation (HCT) is an elective, curative treatment option for patients with sickle cell disease (SCD). Transplant requires extensive self-management behaviors to be successful. The purpose of this study was to describe potential barriers and facilitators to self-management in a group of pediatric patients with SCD prior to HCT and their medical outcomes post-HCT. A multiple case study approach was used to describe 4 pairs of transplant recipients grouped by age, donor type, and donor source. Each pair included a case with minimal and increased post-HCT complications. Complications included readmissions, graft-versus-host disease, systemic infections, and survival in the first year post-HCT. Variables were retrospectively collected and content analyzed to identify barriers and facilitators within and across pairs using existing self-management frameworks. While higher risk transplants experienced more complications, 3 of the 4 cases with increased complications had a larger number of modifiable barriers identified compared with those experiencing minimal complications. At least one modifiable barrier and multiple facilitators were identified in all cases. A standardized psychosocial assessment process with an established plan to mitigate barriers and promote facilitators to self-management is essential to optimize outcomes in patients with SCD undergoing elective HCT.

Parent illness appraisals, parent adjustment, and parent-reported child quality of life in pediatric cancer.

Psychosocial distress is a salient construct experienced by families of children with newly diagnosed cancer, but little is known about parental appraisal of the child's illness and the subsequent impact this may have on child and parent functioning. The goal of the present study was to examine the interrelationships among multiple parent illness appraisals, parent adjustment outcomes, and parent-reported child quality of life in parents of children diagnosed with cancer. Parents completed measures of illness appraisal (illness uncertainty and attitude toward illness), parent adjustment (general distress, posttraumatic stress, parenting stress), and child quality of life (general and cancer-related). Path analysis revealed direct effects for parent illness uncertainty and illness attitudes on all 3 measures of parent adjustment. Illness uncertainty, but not illness attitudes, demonstrated a direct effect on parent-reported child general quality of life; parenting stress had direct effects on general and cancer-related quality of life. Exploratory analyses indicated that parent illness uncertainty and illness attitudes conferred indirect effects on parent-reported general and cancer-related quality of life through parenting stress. Negative parent illness appraisals appear to have adverse impacts on parents' psychosocial functioning and have implications for the well-being of their child with cancer.

Posttraumatic growth and hope in parents of children with cancer.

UNLABELLED: Posttraumatic growth (PTG), a positive change in values and major life goals experienced as a result of the struggle with a highly challenging life circumstance, has been shown to be related to the construct of hope, the belief that goals can be met. To date, no studies have examined the relationship between PTG and hope in parents of children with cancer. Participants were parents (N = 85) of children and adolescents (ages 2-18 years, M = 7.72 years) receiving treatment for cancer. Parents completed a demographic questionnaire, the Posttraumatic Growth Inventory (PTGI), and Hope Scale (HS). Hope was found to be related to PTG in parents of children with cancer, with higher levels of hope associated with greater PTG. Exploratory analyses on the subscales of the PTGI revealed that hope was also related to higher scores on the Relating to Others, New Possibilities, Personal Strength, and Appreciation of Life subscales. Spiritual change was not related to hope in parents. CONCLUSIONS: Findings suggest that experiencing hope during the pediatric cancer experience may facilitate posttraumatic growth in parents. The construct of hope may be an important target of intervention for promoting positive adjustment in this population.

Perceived barriers to care in a pediatric medical home: the moderating role of caregiver minority status.

OBJECTIVE: To examine the association of minority status to perceived barriers to care and health-related quality of life in families presenting to a Medical Home. METHOD: Fifty-three caregivers were classified as minority or nonminority caregivers based on self-reported race/ethnicity. Caregivers completed a measure of perceived barriers to care and child health-related quality of life. RESULTS: Minority caregivers reported more perceived barriers to care with regard to the pragmatics of obtaining health care. The association between perceived barriers to care and child health-related quality of life was moderated by minority status. Perceived barriers to care were only related to child health-related quality of life among minority caregivers. CONCLUSION: Minority families may have difficulties with the cost of health care or logistics of obtaining health care for their child. Perceived health care barriers may still exist within pediatric Medical Homes for minority caregivers and affect child health-related quality of life.

Differences in sleep quality and health-related quality of life in young adults with allergies and asthma and their healthy peers.

OBJECTIVE: The current study examined the relationship between sleep quality and health-related quality of life (HRQOL). PARTICIPANTS: Participants were 501 undergraduate students with allergies (167), asthma + allergies (167), or with no history of a chronic illness (167) completed study measures from August 2011 to April 2012. METHODS: The undergraduate students completed questionnaires online as part of a larger study of psychosocial adjustment of young adults. RESULTS: Young adults with allergies and asthma + allergies reported significantly worse sleep quality and HRQOL than healthy peers. Additionally, those with allergies and asthma + allergies had significantly more sleep disturbances and used sleeping medication significantly more often in the previous month than healthy peers. CONCLUSIONS: These results highlight concerns regarding quality of life and sleep problems in an often-overlooked population. Importantly, sleep difficulties can result in difficulties in daily living and impairment in academic functioning.

Illness appraisals and health-related quality of life in adolescents and young adults with allergies and asthma.

The current study sought to: 1) assess differences in levels of physical and mental health-related quality of life (HRQOL), illness uncertainty, and intrusiveness in adolescents and young adults (AYAs) with allergies and asthma, as well as 2) examine the effect of illness appraisals on HRQOL. Participants were undergraduate students with self-reported allergies (n=74) and asthma (n=74) who completed the Mishel Uncertainty in Illness Scale (MUIS), the Illness Intrusiveness Scale (IIS), and the SF-36 Health Survey Questionnaire. Paired t-tests indicated that AYAs with allergies reported higher levels of illness uncertainty and poorer mental HRQOL than AYAs with asthma; the groups did not differ on reported levels of illness intrusiveness or physical HRQOL. Hierarchical regressions were conducted to examine the relationship between illness appraisals and HRQOL. Results revealed that poorer mental HRQOL was associated with higher illness uncertainty in AYAs with allergies and higher illness intrusiveness in AYAs with asthma. Poorer physical HRQOL was associated with higher illness uncertainty in AYAs with asthma and higher illness intrusiveness in AYAs with allergies and asthma. The current examination suggests that illness appraisals may be differentially related to HRQOL in AYAs with allergies compared to those with asthma.

The Relationship of Allergy Severity to Depressive and Anxious Symptomatology: The Role of Attitude toward Illness.

The current study examined the relationship between self-reported allergy severity, depressive and anxious symptoms, and attitude toward illness in adolescents and young adults (AYAs) with allergies. Participants were 214 undergraduate students between the ages of 17-25 years with self-reported allergies. Participants completed the Center for Epidemiological Studies Depression Scale (CES-D), the Zung Self-Rating Anxiety Scale (SAS), and the Child Attitude Toward Illness Scale (CATIS) as measures of depressive symptoms, anxious symptoms, and attitude toward illness, respectively. Using the bootstrapping method, results revealed that attitude toward illness mediated the relationship between self-reported disease severity and depressive and anxious symptoms. Results of the current study suggest that attitude toward illness is one pathway by which subjective disease severity impacts psychological functioning in AYAs with allergies.