2008 Faculty Researchers

Dr. LaJuan Chambers and Dr. Kathleen Deidrick

Validation of the Psychosocial Assessment Tool (PAT) in Families of Children with Chronic lllnesses

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Department

Child Health

Office Location

7W12-A Health Sciences Center

Phone #:

Office: (573) 882-3961

Summary

Pediatric chronic disease and/or disability can place a tremendous amount of stress on a child and his or her family. Children may experience multiple intrusive and/or painful medical procedures, interruptions in their academic and social pursuits, anxiety about their health and prognosis, and body image concerns. In addition to worries about their child's well-being, parents can experience strain due to role changes (e.g., reducing or stopping employment due to greater caregiving duties), [mancial stress, and difficulty coordinating multiple healthcare appointments. Siblings may worry about their brother or sister and experience multiple separations from family members. Despite this daunting list of stressors, most families fare well after an initial period of adjustment and are able to find meaning in their experiences. A subset of children and families develop mental health concerns as a result of their distress. Children and parents may exhibit anxiety, depression, behavior problems, or post-traumatic stress symptoms. In some cases, mental health concerns can interfere with the child or family's ability to obtain and maintain proper healthcare. As a result, distressed families require an unusually high level of support from the medical team. If families who are at high risk for distress could be identified at diagnosis, targeted interventions could be offered early with the aim of preventing mental health concerns and reducing the amount oflong-tenn support required.

Researchers at Children's Hospital of Philadelphia developed the Psychosocial Assessment Tool (PAT) to identify families at risk for preexisting, ongoing, and escalating distress at the time that a child in the family was diagnosed with cancer. Research suggests that this instrument successfully identifies families who will require higher levels of psychosocial support from the treatment team. Research suggests that the risk factors for distress are similar across families whose children have a variety of chronic illnesses or developmental disabilities. Thus, our goal is to assess the internal and external validity of this measure for use in four additional populations: children with sickle cell disease, autism, craniofacial anomalies and fetal alcohol syndrome. We hope that this instrument will help medical professionals to identify those families who are at risk and provide interventions early on to prevent later distress.

We will use the following methods to achieve our goal:

• Administer PAT, Parenting Stress Index form (if child <12 years of age) or Stress Index for Parents of Adolescents (if child> 12 years of age) and Acute Stress Disorder Scale to 50 families of children with sickle cell disease, autism, craniofacial anomalies or fetal alcohol syndrome.
• Administer P AT to the child's primary doctor and nurse to measure their perceptions of the family's psychosocial risk factors.
• Perform chart review once a month for 4 consecutive months to document any encounters with healthcare team, including physicians and nurses to review utilization of services.