gms | German Medical Science

Objective: A childs serious chronic illness like shunt-dependent hydrocephalus passes a large burden tothe affected parents and care givers. Understanding their concerns and needs regarding communication, information, and support potentially improves treatment success and outcome of the shunt-treated children and lessen the psycho-social burden of their families. To address this question, we performed an institutional pilot-studyin an outpatient neurosurgical service setting.

Methods: Different questionnaires addressing various aspects of patients/parents/physician communication, need of support, psychological aspects etc. were sent to parents whose child was currently flowed-up in our out-patients service (9/2012 – 9/2013 n = 72). Questionnaires included among others the Hydrocephalus Concerns Questionnaire (HCQ), the Distress Thermometer (DT), the GAD-7 and the PHQ-9. Twenty parents agreed to additionally participate in a comprehensive assessment including the assessment of communication preferences (adapted version of the Measure of Patients’ Preferences MPP), of need-for-information (self-developed structured questionnaire), and of supportive care needs (adapted version of the Supportive Care Needs Survey, SCNS-34). Data on parents’ sociodemographic background was collected. The medical history of affected children was evaluated retrospectively.

Results: 47% of the contactedparents returned completed forms that were valid for evaluation. 21% returned incomplete or blank forms. Children’s age of included parents was 3-21 years. 57 % of parents described high psychosocial distress (scored ≥ 5 in the DT). All parents described a variety of concerns regarding the medical and psychosocial well-being of their child. In this neurosurgical setting, parents’ main concerns were focused on medical treatment (e. g., re-operation, shunt complications). Parents’ needs for information and emotional support were high and independent of objective data. However, more distressed parents expressed higher communication, information and support needs.

Conclusion: This pilot study demonstrated that parents of shunt-treated children bear a significant socio-psychological burden thatshould be considered in the treatment of this group of children. Further, physicians should be aware of the specific psychological problems of the affected parents and care givers and offer respective professional support.