Suchergebnisse

This article describes service use, perceived helpfulness of services, and the services requested of 157 families living with a child or adolescent with attention-deficit/hyperactivity disorder (ADHD) and specifically asks if service use and service need is a function of certain social demographic factors. Whereas these data suggest that ADHD is a fairly universal experience, as indicated by the high rate of service use across ethnic groups, income status, sex, and family composition, single-mother families used the most services, Hispanic families used the fewest, and families with boys with ADHD used more services than families with girls with ADHD. Income was not a significant factor in any services used or services requested. This study lends strength to the argument that more specialized services for certain groups are needed in venues with local community services, such as schools, where the majority of these children and families are already seeking help.

Introduction: Research on the perceived utility of genomic sequencing has focused primarily on pediatric populations and on individuals and families with rare genetic diseases. Here, we evaluate how well a multifaceted perceived utility model developed with these populations applies to a diverse, adult population aged 18–49 at risk for hereditary cancer and propose new considerations for the model. Methods: Participants received clinical genomic sequencing in the Cancer Health Assessments Reaching Many (CHARM) study. Semi-structured qualitative interviews were conducted with a subset of participants at 1 and 6 months after results disclosure. We used an approach influenced by grounded theory to examine perceptions of the utility of genomic sequencing and analyzed how utility in CHARM mapped to the published multifaceted perceived utility model, noting which domains were represented or absent and which were most salient to our population. Results: Participants' discussions of utility often involved multiple domains and revealed the variety of ways in which receiving sequencing results can impact one's life. Results demonstrated that an individual's perception of utility can change over the life course when sequenced at a relatively young age and may be influenced by the resources available to them to act on the results. Conclusion: Our findings demonstrate the relevance of a multifaceted perceived utility model for a diverse adult population at risk for hereditary cancer. We identified refinements that could make the model more robust, including emphasizing the overlapping nature of the domains and the importance of life stage and personal resources to the perception of utility.