Reiss J, Walker LR, Gibson R, Walker LR; Academy for Health Services Research and Health Policy. Meeting.

Abstr Acad Health Serv Res Health Policy Meet. 2002; 19: 21.

Pediatrics, Georgetown University Children's Medical Center, 3800 Reservoir Rd NW 2PHC, Washington, DC 20007; Tel: (202) 687-8839; Fax: (202) 687-7161; E-mail: walkerl1@gunet.georgetown.edu

RESEARCH OBJECTIVE: The objective of this research was to explore and document the process of health care transition (HCT) from the perspectives of youth and young adults, family members and health care providers. Despite the importance of HCT only limited research exists. Anecdotal evidence suggests that many young adults continue to receive health services from pediatric providers and in pediatric treatment centers and are having difficulty transitioning to adult oriented health services. STUDY DESIGN: A qualitative approach was used in this study to address the need for exploratory research on HCT and to document the transition experience from the perspective of the participants. Thirty-four 60-90 minute focus groups were held with 143 individuals. Participants were asked to describe their transition experience and make recommendations to improve the process of HCT. Transcripts from focus groups were transcribed and analyzed with the assistance of Atlas-ti a qualitative data management program. A phenomenological and narrative analysis approach was used to analyze the transcripts. POPULATION STUDIED: A nominated sample of 143 individuals who were transitioning or had HCT experienced were invited to participate in focus groups. Participants included youth (age13-18) and young adults (age18-35) with disabilities and SHCNs, family members of individuals with disabilities and SHCNs, and health care providers. The participants were evenly divided across groups. Although the participants were not expected to constitute a representative sample of disabled individuals in the U.S., efforts were made to include individuals with a variety of diagnoses and medical conditions, racial and ethnic backgrounds and from a variety of geographical locations and facility types. Participants were drawn from over 20 states however focus groups were held in nine cities in the south east and mid west. Inclusion criteria for the study included age requirements (minimum age of 13 years), experience or interest in HCT and a willingness to share their HCT experiences. Arrangements were made to accommodate all who were interested in participating by holding all focus groups in accessible spaces and the provision of adapted communication options. PRINCIPAL FINDINGS: Analysis of the transcripts have resulted in three categories of data: Promising practices (the do's and don'ts of HCT), System Issues (difficulties that emerge between the adult and pediatric health care systems and their affect on HCT) and Relationship and Personal Dynamics (the stories and relationships of HCT). Promising practices are generally statements about what has and has not been successful for the respondents regarding the process of HCT. These statements affirm many of the suggestions found in the literature on HCT. Examples include: Give the child responsibility for medical self-care as early as possible, start the process of health care transition as early as possible, focus on having a life, not a on having an illness or disability, create/keep a medical journal. System Issues are descriptions of the physical and intangible medical systems that impact HCT. These are the observations by the respondent about how health care systems are organized and how that organization impacts HCT. Examples include the lack of connections between pediatric medical services and adult health care, differences in residency training practices in adult and pediatric cardiology, age limits on program eligibility, ER and clinic organization and the process of making referrals. These results spotlight the systems and institutional structures that both inhibit and facilitate HCT. Relationship and Personal Dynamics are descriptions of the interpersonal aspect of HCT. The HCT narratives often describe the complex relationships that exist between health care providers, family members and young adults. It is in the context of these relationships that care is rendered, families and young adult are educated about medical conditions, information is exchanged and decisions and power are brokered. These narratives highlight the importance of relationships and interpersonal dynamic and how they influence the transition process as well as satisfaction and evaluation of medical care. These results provide an image of HCT as a process that evolves over time and highlight opportunities were interventions can make HCT a successful process. CONCLUSIONS: HCT is much more complex than originally thought. It is part of and impacted by medical beliefs and practices that affect the health care of healthy young adults. Significant systems barriers in the design of pediatric and adult medicine inhibit the process of HCT. In addition to the system barriers formal and informal interpersonal relationships between health care providers, young adults and families also have a significant influence on the process and evaluation of satisfaction and comfort with HCT. IMPLICATIONS FOR POLICY, DELIVERY OR PRACTICE: IMPLICATIONS FOR POLICY, DELIVERY OR PRACTICE: Many young adults who have grown up with special heath care needs or a disability require more than a transfer to adult oriented medical practices. These young adults represent a new chronic population with unique experiences and needs. The process of a successful HCT requires planning and changes in the way both the pediatric and adult medicine is provided. This study begins to address some of these changes and provides recommendations for how medical practice can continue to serve the medical, social and developmental needs of young adults as the engage in the process of HCT. PRIMARY FUNDING SOURCE: National Institute on Disability and Rehabilitation Research (Federal Department of Education)

Publication Types:

• Meeting Abstracts

Keywords:

• Adult
• Child
• Delivery of Health Care
• Disabled Persons
• Family
• Focus Groups
• Health Services Needs and Demand
• Health Transition
• Humans
• Insurance, Health
• Needs Assessment
• Pediatrics
• United States
• economics
• hsrmtgs

Other ID:

• GWHSR0001987

UI: 102273663

From Meeting Abstracts