Due to many barriers to care, parents of children with special health care needs often have to be very aggressive to get health care for their children. Researchers, supported in part by the Agency for Healthcare Research and Quality (HS13058), conducted focus groups with English and Spanish-speaking parents who were asked about specific areas of the pediatric care experience: parental skills necessary to gain access to the formal U.S. health care system, how to use those services once gained, care site (front office and clinical visit), and outcomes (for instance, deprivation and distrust).
Each of three focus groups included an average of three participants and was conducted in both languages, for a total of six audiotaped focus groups. Parents said that gaining access to care for their children was a problem in several areas. They often had to wait too many days or weeks for an appointment. Also, getting to appointments often entailed long bus rides with packed lunches, as well as balancing responsibilities such as other children, a job, or getting dinner on the table by a certain time. Parents reported uncaring front office staff, who seemed prejudiced against those who looked poor, were minorities, or did not speak English well.
Parents often endured long waiting times to see the doctor. When finally seen by the doctor, they complained of being treated by doctors not trained in the right specialty, or who focused on the symptoms but did not deal with the underlying causes. The referral system was problematic, as was coordination of information between insurer and provider and among providers. Parents considered the system fragmented and arbitrary. Fees were inconsistent, records were not sent from the lab to the office, referrals were delayed or not forthcoming, and paperwork went missing. As a result, parents distrusted the health care system and felt marginalized. They said that they had to be very assertive to get needed care for their children.
One important feature of this study is the analysis of qualitative data. This analysis allowed for a more holistic perspective on issues related to patient health care experiences and quality than quantitative analysis alone.
See "Parent-identified barriers to pediatric health care: A process-oriented model," by Elisa J. Sobo, Ph.D., Michael Seid, Ph.D., and Leticia Reyes Gelhard, M.S., in the February 2006 HSR: Health Services Research 41(1), pp. 148-172.