Changes in Distress Over Time for Caregivers of Children Referred to a Cancer Predisposition Clinic

Children may be referred to genetic clinics following a cancer diagnosis or disclosure of family history and may or may not receive genetic testing for cancer predisposition syndromes depending on several factors. The current multi-method study explored psychological outcomes (distress, anxiety, and depression) of the genetic testing process and attitudes about genetic testing in caregivers of children who were recommended and not recommended for testing following genetic counseling.

Ninety-four caregivers (≥18 years old) of children (<18 years old) were recruited at their first appointment at a genetic clinic at a large midwestern children's hospital. Caregivers completed standardized measures before their counseling visit (T1), 1 month (T2), and 2 months later (T3). Interested caregivers (n = 46) participated in qualitative interviews at T3.

From T1 to T2, the proportion of caregivers with clinical levels of anxiety decreased for those recommended (39% to 15%) and increased for those not recommended (38% to 40%) (p = 0.03). From T2 to T3, the proportion of caregivers with clinical levels of distress increased for those recommended (31% to 65%) and decreased for those not recommended (48% to 39%) (p = 0.01). Qualitatively, caregivers of children who were not recommended endorsed feelings of relief and reassurance, while caregivers of children recommended endorsed no impact, sadness and guilt, empowerment, and anxiety followed by relief.

Results indicate that while all caregivers may benefit from psychosocial support throughout the genetic testing process, additional support should be given to caregivers of children recommended for genetic testing.