Development of and Preliminary Results of a Survey Instrument to Measure the Family Costs Associated With Child Mental Health Conditions

Rationale: Previous studies document that children's mental health problems cause substantial stress and burden to families. However, family burden instruments do not typically provide quantitative estimates of family costs. Few studies have attempted to measure family costs, particularly time costs related to child mental health conditions (e.g., added time spent caregiving due to mental health condition, time coordinating services with providers and schools). To date, comprehensive family costs have rarely been included in economic evaluations of new interventions or policies. If we do not include family costs when evaluating new interventions and policies, we risk undervaluing new interventions, increasing difficulty in translating research into practice, and creating negative consequences to families from new financing policies. Objective: To describe the development of and preliminary results from a survey to measure financial and time costs experienced by families of children with mental health and developmental conditions and to compare these costs for publicly and privately insured families. Methodology: The study combined qualitative and quantitative methods to develop and conduct preliminary testing of a survey instrument to measure the costs to families associated with children's mental health conditions. To develop a preliminary survey instrument, we conducted a structured review and evaluation of previous studies and related instruments measuring family costs, we conducted in-depth qualitative interviews with 53 parents of children diagnosed with mental health conditions (externalizing disorders, internalizing disorders, and pervasive developmental disorders) to explore families' experiences. Next we conducted 25 pilot interviews of the instrument and 10 cognitive interviews with parents to identify problems in comprehension and cognitive processing in reporting family costs. We are currently conducting interviews with parents (planned N=100) to examine the validity and reliability of the instrument. Study subjects were recruited from two health services organizations in Portland, Oregon. Families with private insurance coverage were recruited from a large not-for-profit HMO and families with public insurance were recruited from a local not-for-profit community mental health agency that serves publicly insured and uninsured families. Results: Families in both the publicly and privately insured samples reported similar financial and time costs. Common financial costs included costs of medications, transportation to services, replacement of household and personal property. Frequently reported time costs were time managing the child's condition at home, time in services and seeking services for child, and time coordinating with schools. Parents of children with mental health conditions were able to participate in, and complete a survey interview to measure family costs. A few important differences in the publicly and privately insured samples were also identified. For example, the impact of the condition on the families finances was sometimes much more dramatic for publicly insured families, for example several publicly insured families reported making tradeoffs between paying for treatment related costs and paying for housing or food. Conclusions: Families of children with mental health and developmental conditions experience a wide range of financial and time costs. Understanding these costs may help in evaluating new programs and policies for the care of children with these conditions