Familial beliefs and coping among families of children with oncological or hematological illnesses

Study ID
STU 032014-081

Study Sites

  • Children’s Medical Center (Dallas, Plano, Southlake)

Melissa Faith

Principal Investigator
Julie Germann, Ph.D.


Siblings of children and adolescents with chronic illness are at risk for adjustment difficulties, especially if they perceive family disruption after the diagnosis. in particular, parents' adjustment to pediatric chronic illness appears to play a role in healthy siblings' adjustment. For example, maternal depression and distress after a child's cancer diagnosis has been found to predict behavioral problems in healthy siblings. one predictor of parents' adjustment is the manner in which parents cope with negative emotions. Some studies show that parents who use adaptive coping strategies (e.g., support seeking and problem solving) demonstrate more positive adjustment to children's illnesses than parents who use maladaptive coping strategies (e.g., ruminating or avoidance). no studies have examined links between parents' coping strategies and healthy siblings' strategies for coping with pediatric chronic illness. Studies also have yet to examine links between parents' coping, patients' coping, and sibling relationship quality. The proposed study will evaluate the utility of primary caregivers' coping responses, hope, and beliefs about children's emotions in predicting healthy siblings' hope and strategies for coping with pediatric chronic illness. Further, this study will examine the relation between caregivers' coping strategies and sibling relationship quality perceived by the pediatric patient, caregiver, and nearest-age healthy sibling. Finally, this study will examine the correlation between caregivers', pediatric patients', and siblings' hope and perceptions of sibling relationship quality.

Participant Eligibility

* Participants will be children and adolescents with a hematological or oncological illness/illness history (see next bullet), their primary caregiver, and their identified sibling (the sibling who is closest in age to the patient but over age 7 and residing in the same home).

* Children and adolescents with a hematological or oncological illness/illness history
* is defined as children and adolescents from the CCBD patient population who have an oncological illness (e.g., leukemia, aplastic anemia, Wilms tumor, etc.), brain tumor, or hematological (e.g., hemophilia, sickle cell disease, etc.) illness or illness history.

* Sibling
* will be defined as any full biological or half-biological sibling, step-sibling, or other child over whom the pediatric patient[Single Quote]s caregiver has guardianship (e.g., adopted children, cousins over whom the primary caregiver has guardianship).

* Primary caregiver
* will be defined as any adult with whom the child lives at least 50% of the time and who identifies himself/herself as the child[Single Quote]s primary caretaker (e.g., prepares meals as appropriate, administers medication as appropriate, administers discipline as appropriate) at least 50% of the time.

* Although some aims of this study require reports from all three family members (patient, parent, and sibling), other aims require reports from only one or two family members. Therefore, patients, caregivers, and siblings may participate in the study even if other members of the family are unable or unwilling to do so or if the pediatric patient does not have a sibling.

* Participating pediatric patients and siblings must be at least 7 years of age because all child-completed study measures have been validated in previous studies for children as young as 7 years of age.

* Participants must be able to read English or Spanish or must be able to speak and understand spoken English or Spanish.

* Inclusion criteria:
o A child or adolescent in the family (7- <18 years of age) is treated or followed at the CCBD for an oncology-related disorder, brain tumor, or hematological disorder and lives with a primary caregiver (e.g., parent) and/or sibling.
o The diagnosis was conferred at least six weeks prior to recruitment. This criteria reflects a tendency for caregivers[Single Quote] emotional distress to peak within the first month and return to more stable levels within six weeks after a child is diagnosed with a chronic illness. Statistical analyses will control for time since diagnosis and whether the ill-child is currently receiving treatment for their solid tumor, oncology-related, brain tumor, or hematological disorder (see statistical analyses).
o All participants in the family must be able to read English or Spanish or must be able to speak and understand spoken English or Spanish.