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Journal ArticleDOI

Health care transition: youth, family, and provider perspectives.

01 Jan 2005-Pediatrics (American Academy of Pediatrics)-Vol. 115, Iss: 1, pp 112-120
TL;DR: Evidence supports the need for appropriate termination of pediatric relationships as part of the transition process and supports the idea that pediatric and adult-oriented medicines represent 2 different medical subcultures.
Abstract: Objective. This study examined the process of health care transition (HCT) posing the following questions: What are the transition experiences of youths and young adults with disabilities and special health care needs, family members, and health care providers? What are promising practices that facilitate successful HCT? What are obstacles that inhibit HCT? Methods. A qualitative approach was used to investigate these questions. Focus group interviews were conducted. Content and narrative analyses of interview transcripts were completed using ATLAS.ti. Results. Thirty-four focus groups and interviews were conducted with 143 young adults with disabilities and special health care needs, family members, and health care providers. Content analysis yielded 3 content domains: transition services, which presents a chronological understanding of the transition process; health care systems, which presents differences between pediatric and adult-oriented medicine and how these differences inhibit transition; and transition narratives, which discusses transition experience in the broader context of relationships between patients and health care providers. Conclusion. This study demonstrated the presence of important reciprocal relationships that are based on mutual trust between providers and families and are developed as part of the care of chronically ill children. Evidence supports the need for appropriate termination of pediatric relationships as part of the transition process. Evidence further supports the idea that pediatric and adult-oriented medicines represent 2 different medical subcultures. Young adults’ and family members’ lack of preparation for successful participation in the adult health care system contributes to problems with HCT.
Citations
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Journal ArticleDOI
TL;DR: This updated clinical report provides more practice-based quality improvement guidance on key elements of transition planning, transfer, and integration into adult care for all youth and young adults.
Abstract: Risk and vulnerability encompass many dimensions of the transition from adolescence to adulthood. Transition from pediatric, parent-supervised health care to more independent, patient-centered adult health care is no exception. The tenets and algorithm of the original 2011 clinical report, “Supporting the Health Care Transition from Adolescence to Adulthood in the Medical Home,” are unchanged. This updated clinical report provides more practice-based quality improvement guidance on key elements of transition planning, transfer, and integration into adult care for all youth and young adults. It also includes new and updated sections on definition and guiding principles, the status of health care transition preparation among youth, barriers, outcome evidence, recommended health care transition processes and implementation strategies using quality improvement methods, special populations, education and training in pediatric onset conditions, and payment options. The clinical report also includes new recommendations pertaining to infrastructure, education and training, payment, and research.

1,002 citations

Journal ArticleDOI
TL;DR: This clinical report represents expert opinion and consensus on the practice-based implementation of transition for all youth beginning in early adolescence and provides a structure for training and continuing education to further understanding of the nature of adolescent transition and how best to support it.
Abstract: Optimal health care is achieved when each person, at every age, receives medically and developmentally appropriate care. The goal of a planned health care transition is to maximize lifelong functioning and well-being for all youth, including those who have special health care needs and those who do not. This process includes ensuring that high-quality, developmentally appropriate health care services are available in an uninterrupted manner as the person moves from adolescence to adulthood. A well-timed transition from child- to adult-oriented health care is specific to each person and ideally occurs between the ages of 18 and 21 years. Coordination of patient, family, and provider responsibilities enables youth to optimize their ability to assume adult roles and activities. This clinical report represents expert opinion and consensus on the practice-based implementation of transition for all youth beginning in early adolescence. It provides a structure for training and continuing education to further understanding of the nature of adolescent transition and how best to support it. Primary care physicians, nurse practitioners, and physician assistants, as well as medical subspecialists, are encouraged to adopt these materials and make this process specific to their settings and populations.

997 citations

Journal ArticleDOI
TL;DR: This review covers current understanding of the biology of Williams–Beuren syndrome, a disorder of microdeletion or contiguous gene deletion, and its causes.
Abstract: Williams–Beuren syndrome, a multisystem disorder caused by the deletion of a chromosome region of 1.5 million to 1.8 million base pairs containing 26 to 28 genes, is a disorder of microdeletion or contiguous gene deletion. This review covers current understanding of the biology of this disorder.

621 citations

Journal ArticleDOI
17 Feb 2010-JAMA
TL;DR: Prevalence of chronic conditions among children and youth increased from 1988 to 2006, however, presence of these conditions was dynamic over each 6-year cohort, and there were higher rates among male (adjusted odds ratio [AOR], 1.24; 95% CI, 1.07-1.42), Hispanic (AOR, 1
Abstract: Context Rates of obesity and other childhood chronic conditions have increased over recent decades. Patterns of how conditions change over time have not been widely examined. Objective To evaluate change in prevalence of obesity and other chronic conditions in US children, including incidence, remission, and prevalence. Design, Setting, and Participants Prospective study using the National Longitudinal Survey of Youth–Child Cohort (1988-2006) of 3 nationally representative cohorts of children. Children were aged 2 through 8 years at the beginning of each study period, and cohorts were followed up for 6 years, from 1988 to 1994 (cohort 1, n = 2337), 1994 to 2000 (cohort 2, n = 1759), and 2000 to 2006 (n = 905). Main Outcome Measures Parent report of a child having a health condition that limited activities or schooling or required medicine, special equipment, or specialized health services and that lasted at least 12 months. Obesity was defined as a body mass index at or above the 95th percentile for age. Chronic conditions were grouped into 4 categories: obesity, asthma, other physical conditions, and behavior/learning problems. Results The end-study prevalence of any chronic health condition was 12.8% (95% confidence interval [CI], 11.2%-14.5%) for cohort 1 in 1994, 25.1% (95% CI, 22.7%-27.6%) for cohort 2 in 2000, and 26.6% (95% CI, 23.5%-29.9%) for cohort 3 in 2006. There was substantial turnover in chronic conditions: 7.4% (95% CI, 6.5%-8.3%) of participants in all cohorts had a chronic condition at the beginning of the study that persisted to the end, 9.3% (95% CI, 8.3%-10.3%) reported conditions at the beginning that resolved within 6 years, and 13.4% (95% CI, 12.3%-14.6%) had new conditions that arose during the 6-year study period. The prevalence of having a chronic condition during any part of the 6-year study period was highest for cohort 3 (51.5%; 95% CI, 47.3%-55.0%), and there were higher rates among male (adjusted odds ratio [AOR], 1.24; 95% CI, 1.07-1.42), Hispanic (AOR, 1.36; 95% CI, 1.11-1.67), and black (AOR, 1.60; 95% CI, 1.35-1.90) youth. Conclusions Prevalence of chronic conditions among children and youth increased from 1988 to 2006. However, presence of these conditions was dynamic over each 6-year cohort.

615 citations

Journal ArticleDOI
TL;DR: The initial validation study suggests the TRAQ is a useful tool to assess transition readiness in YSHCN and to guide educational interventions by providers to support transition.
Abstract: Objective The aim of this study was to develop the Transition Readiness Assessment Questionnaire (TRAQ), a measure of readiness for transition from pediatric to adult healthcare for youth with special health care needs (YSHCN). Methods We administered TRAQ to 192 YSHCN aged 16–26 years in three primary diagnostic categories, conducted factor analysis, and assessed differences in TRAQ scores by age, gender, race, and primary diagnosis type. Results Factor analysis identified two TRAQ domains with high internal consistency: Skills for Self-Management and Skills for Self-Advocacy. Each domain had high internal consistency. In multivariate regression models, older age and a primary diagnosis of an activity limiting physical condition were associated with higher scores in Self-Management, and female gender and a primary diagnosis of an activity limiting physical condition were associated with higher scores in Self-Advocacy. Conclusions Our initial validation study suggests the TRAQ is a useful tool to assess transition readiness in YSHCN and to guide educational interventions by providers to support transition.

459 citations

References
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Journal ArticleDOI
TL;DR: The discipline and practice of qualitative research have been extensively studied in the literature as discussed by the authors, including the work of Denzin and Denzin, and their history in sociology and anthropology, as well as the role of women in qualitative research.
Abstract: Introduction - Norman K Denzin and Yvonna S Lincoln The Discipline and Practice of Qualitative Research PART ONE: LOCATING THE FIELD Qualitative Methods - Arthur J Vidich and Stanford M Lyman Their History in Sociology and Anthropology Reconstructing the Relationships between Universities and Society through Action Research - Davydd J Greenwood and Morten Levin For Whom? Qualitative Research, Representations and Social Responsibilities - Michelle Fine et al Ethics and Politics in Qualitative Research - Clifford G Christians PART TWO: PARADIGMS AND PERSPECTIVES IN TRANSITION Paradigmatic Controversies, Contradictions and Emerging Confluences - Yvonna S Lincoln and Egon G Guba Three Epistemological Stances for Qualitative Inquiry - Thomas A Schwandt Interpretivism, Hermeneutics and Social Constructionism Feminisms and Qualitative Research at and into the Millennium - Virginia L Olesen Racialized Discourses and Ethnic Epistemologies - Gloria Ladson-Billings Rethinking Critical Theory and Qualitative Research - Joe L Kincheloe and Peter McLaren Cultural Studies - John Frow and Meaghan Morris Sexualities, Queer Theory and Qualitative Research - Joshua Gamson PART THREE: STRATEGIES OF INQUIRY The Choreography of Qualitative Research Design - Valerie J Janesick Minuets, Improvisations and Crystallization An Untold Story? Doing Funded Qualitative Research - Julianne Cheek Performance Ethnography - Michal M McCall A Brief History and Some Advice Case Studies - Robert E Stake Ethnography and Ethnographic Representation - Barbara Tedlock Analyzing Interpretive Practice - Jaber F Gubrium and James A Holstein Grounded Theory - Kathy Charmaz Objectivist and Constructivist Methods Undaunted Courage - William G Tierney Life History and the Postmodern Challenge Testimonio, Subalternity and Narrative Authority - John Beverley Participatory Action Research - Stephen Kemmis and Robin McTaggart Clinical Research - William L Miller and Benjamin F Crabtree PART FOUR: METHODS OF COLLECTING AND ANALYZING EMPIRICAL MATERIALS The Interview - Andrea Fontana and James H Frey From Structured Questions to Negotiated Text Rethinking Observation - Michael V Angrosino and Kimberly A Mays de Perez From Method to Context The Interpretation of Documents and Material Culture - Ian Hodder Re-Imagining Visual Methods - Douglas Harper Galileo to Neuromancer Auto-Ethnography, Personal Narrative, Reflexivity - Carolyn Ellis and Arthur P Bochner Researcher as Subject Data Management and Analysis Methods - Gery W Ryan and H Russell Bernard Software and Qualitative Research - Eben A Weitzman Analyzing Talk and Text - David Silverman Focus Groups in Feminist Research - Esther Madriz Applied Ethnography - Erve Chambers PART FIVE: THE ART AND PRACTICES OF INTERPRETATION, EVALUATION AND REPRESENTATION The Problem of Criteria in the Age of Relativism - John K Smith and Deborah K Deemer The Practices and Politics of Interpretation - Norman K Denzin Writing - Laurel Richardson A Method of Inquiry Anthropological Poetics - Ivan Brady Understanding Social Programs through Evaluation - Jennifer C Greene Influencing the Policy Process with Qualitative Research - Ray C Rist PART SIX: THE FUTURE OF QUALITATIVE RESEARCH Qualitative Inquiry - Mary M Gergen and Kenneth J Gergen Tensions and Transformations The Seventh Moment - Yvonna S Lincoln and Norman K Denzin Out of the Past

26,318 citations

Book
01 Jan 1970
TL;DR: Yalom as mentioned in this paper described the course of therapy from both the patient's and the therapist's viewpoint in Encounter Groups: First Facts (1973) and Every Day gets a Little Closer: A Twice-Told Therapy (1974).
Abstract: This book first appeared in 1970 and has gone into two further editions, one in 1975 and this one in 1985. Yalom is also the author of Existential Psychotherapy (1980), In-patient Group Psychotherapy (1983), the co-author with Lieberman of Encounter Groups: First Facts (1973) and with Elkin of Every Day Gets a Little Closer: A Twice-Told Therapy (1974) (which recounts the course of therapy from the patient's and the therapist's viewpoint). The present book is the central work of the set and seems to me the most substantial. It is also one of the most readable of his works because of its straightforward style and the liberal use of clinical examples.

4,235 citations

01 Jan 2000
TL;DR: In fact, most of the archaeologically recoverable information about human thought and human behavior is text, the good stuff of social science as mentioned in this paper, which is what we use in this paper.
Abstract: This chapter is about methods for managing and analyzing qualitative data. By qualitative data the authors mean text: newspapers, movies, sitcoms, e-mail traffic, folktales, life histories. They also mean narratives--narratives about getting divorced, about being sick, about surviving hand-to-hand combat, about selling sex, about trying to quit smoking. In fact, most of the archaeologically recoverable information about human thought and human behavior is text, the good stuff of social science.

3,671 citations

01 Jan 1994

3,425 citations

Book
01 Apr 1999
TL;DR: The Qualitative Research in Health Care as discussed by the authors provides a clear and accessible introduction to conducting and interpreting qualitative research, incorporating new examples, references and chapters relevant for a comprehensive introduction to the subject.
Abstract: This fully revised and updated edition of Qualitative Research in Health Care offers a clear and accessible introduction to conducting and interpreting qualitative research, incorporating new examples, references and chapters relevant for a comprehensive introduction to the subject. New chapters and references include: • Synthesising qualitative research • Secondary analysis of primary data • Ethical issues • Mixed research methods and integrating qualitative with quantitative techniques • Consensus and other methods for eliciting public and professional views and preferences • Conversation analysis

2,427 citations

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