Preparing for adulthood: health care transition counseling for youth with arthritis.
ABSTRACT To determine the proportion of adolescents with arthritis who receive health care transition services and to compare the rates with those reported for adolescents with other special health care needs and adolescents with diabetes.
We used data from the 2005-2006 National Survey of Children with Special Health Care Needs. A parent/guardian identified youth ages 12-17 years with arthritis (n = 1,052), diabetes (n = 389), and special health care needs (n = 18,189). Four questions examined the extent to which providers discussed health care transition issues, including 1) transfer of care to adult providers, 2) health care needs of adults, 3) acquiring health insurance, and 4) encouraging self-care responsibility. Bivariate comparisons assessed the associations between sociodemographic characteristics and health care transition services, and multivariate regression models compared outcomes between conditions.
Many adolescents with arthritis are being encouraged to assume self-care responsibilities (74.8%); fewer discussed how health needs will change in adulthood (52.1%), acquiring insurance (22.5%), or transferring care to a provider who sees adults (19.0%). These results are similar to youth with other special health care needs, but behind youth with diabetes.
Among this sample of US adolescents, many report discussions about health care needs and self-management, but few are addressing critical aspects of the transition to adult-oriented health care.
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ABSTRACT: To gain insight into the transitional needs of adolescents with juvenile idiopathic arthritis (JIA) and to examine how these needs may be addressed within a structured programme of transitional care. A qualitative study using focused group discussions was performed. Groups comprised (i) adolescents with JIA aged 12-18 yr, (ii) young adults with JIA aged 19-30 yr, (iii) parents of adolescents with JIA, and (iv) parents of young adults with JIA. Transitional needs included aspects of participants' physical, social, psychological and vocational lives. Participants (n = 55) called for developmentally appropriate care based upon shared decision-making, continuity of health professionals, and wider access to information and community services. Suggestions for improved care included individualized assessment of patient's holistic needs and increased transfer preparation. These results provide a useful guide to transitional care and suggest an approach that is adolescent-focused and evidence-based.Rheumatology 07/2004; 43(6):770-8. · 4.21 Impact Factor
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ABSTRACT: There is little documented information regarding current provision of psycho-educational interventions in the context of juvenile chronic arthritis (JCA). The purpose of the present exploratory study was to gain insight and understanding of the needs and preferences of children with JCA and their parents, and to examine how these may be more adequately addressed by future psycho-educational interventions. Data were collected through focus group discussions with children, parents and health professionals, respectively. Results showed that the voices of children and their parents were as one in calling for greater availability, easier access and more comprehensive psycho-educational interventions in the context of JCA. Greater emphasis is needed upon the social and emotional aspects of chronic disease, and enhancing the self-management skills of children and their families. Moreover, content should be tailored to match broad categories of disease severity (e.g. mild or severe), developmental age and stage in the life course (e.g. child or adolescent). Group education, informal support groups, activity weekends and summer camps would be particularly welcomed by parents and children, and may serve to reduce their sense of isolation whilst providing much needed reassurance. Findings provide a useful set of signposts to guide future development of psycho-educational interventions in the field of psychosocial paediatric rheumatology.Health Education Research 11/1999; 14(5):597-610. · 1.66 Impact Factor
- Journal of Adolescent Health 11/2003; 33(4):309-11. · 2.97 Impact Factor