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Original Research

A qualitative study on the educational needs of young people with chronic conditions transitioning from pediatric to adult care

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Pages 2649-2660 | Published online: 12 Dec 2018

References

  • FegranLHallEOUhrenfeldtLAagaardHLudvigsenMSAdolescents’ and young adults’ transition experiences when transferring from paediatric to adult care: a qualitative metasynthesisInt J Nurs Stud201451112313523490470
  • WatsonARNon-compliance and transfer from paediatric to adult transplant unitPediatr Nephrol200014604690472
  • PacaudDYaleJFExploring a black hole: transition from paediatric to adult care services for youth with diabetesPaediatr Child Health2005101313419657443
  • FerroMAAdolescents and young adults with physical illness: a comparative study of psychological distressActa Paediatr20131033237
  • WHOThe Second Decade: Improving Adolescent Health and DevelopmentGenevaWHO2001
  • FarreAWoodVRapleyTParrJRReapeDMcDonaghJEDevelopmentally appropriate healthcare for young people: a scoping studyArch Dis Child2015100214415125260519
  • McDonaghJEFarreAGleesonHTransition Collaborative GroupMaking healthcare work for young peopleArch Dis Child2018103662329305358
  • CampbellFBiggsKAldissSKTransition of care for adolescents from paediatric services to adult health servicesCochrane Database Syst Rev20164CD00979427128768
  • BlumRWGarellDHodgmanCHTransition from child-centered to adult health-care systems for adolescents with chronic conditions. A position paper of the Society for Adolescent MedicineJ Adolesc Health19931475705768312295
  • CrowleyRWolfeILockKMcKeeMImproving the transition between paediatric and adult healthcare: a systematic reviewArch Dis Child201196654855321388969
  • World Health OrganizationTherapeutic Patient Education: Continuous Education Programmes for Health Care Providers in the Field of Prevention of Chronic Diseases. WHO Working Group recommendationsCopenhagenRegional Office for Europe, WHO1998
  • SchwartzLATuchmanLKHobbieWLGinsbergJPA social-ecological model of readiness for transition to adult-oriented care for adolescents and young adults with chronic health conditionsChild Care Health Dev201137688389522007989
  • Reed-KnightBBlountRLGillelandJThe transition of health care responsibility from parents to youth diagnosed with chronic illness: a developmental system perspectiveFam Syst Health201432221923424749677
  • ModiACPaiALHommelKAPediatric self-management: a framework for research, practice, and policyPediatrics20121292e473e48522218838
  • SchmidtSHerrmann-GaritzCBombaFThyenUA multicenter prospective quasi-experimental study on the impact of a transition-oriented generic patient education program on health service participation and quality of life in adolescents and young adultsPatient Educ Couns201699342142826597543
  • SchmidtSMarkwartHBombaFDifferential effect of a patient-education transition intervention in adolescents with IBD vs. diabetesEur J Pediatr2018177449750529340756
  • MorsaMGagnayreRDeccacheCLombrailPFactors influencing the transition from pediatric to adult care: a scoping review of the literature to conceptualize a relevant education programPatient Educ Couns2017100101796180628528694
  • RichMGinsburgKRThe reason and rhyme of qualitative research: why, when, and how to use qualitative methods in the study of adolescent healthJ Adolesc Health199925637137810608576
  • PopeCMaysNReaching the parts other methods cannot reach: an introduction to qualitative methods in health and health services researchBMJ1995311699642457613329
  • KirkSMethodological and ethical issues in conducting qualitative research with children and young people: a literature reviewInt J Nurs Stud20074471250126017027985
  • ZarottiNSimpsonJFletcherI‘I have a feeling I can’t speak to anybody’: A thematic analysis of communication perspectives in people with Huntington’s diseaseChronic Illn Epub201711
  • RéachGFompeyrineDMularskiCUnderstanding the patient multidimensional experience: a qualitative study on coping in hospitals of Assistance Publique-Hôpitaux de Paris, FrancePatient Prefer Adherence2015955556025914525
  • BellLEBartoshSMDavisCLAdolescent transition to adult care in solid organ transplantation: a consensus conference reportAm J Transplant200882230224218822088
  • CourtJMCameronFJBerg-KellyKSwiftPGFISPAD Clinical Practice Consensus Guidelines 2006–2007. Diabetes in adolescencePediatric Diabetes2008925526218547239
  • SawyerSMDrewSYeoMSBrittoMTAdolescents with a chronic condition: challenges living, challenges treatingLancet200736995711481148917467519
  • DeccacheATeaching, training or educating patients? Influence of contexts and models of education and care on practice in patient educationPatient Educ Couns1995261–31191297494711
  • EURORDIS, Rare Diseases EuropeAbout rare diseases Available from: https://www.eurordis.org/about-rare-diseasesAccessed July 18, 2018
  • MorseJMStrategies for samplingMorseJMQualitative Nursing Research: A Contemporary DialogueNewbury Park, CASage Publications1993127145
  • GreenJThorogoodNQualitative Methods for Health Research3rd edLondonSage Publications Ltd2014
  • NowellLSNorrisJMWhiteDEMoulesNJThematic analysis: striving to meet the Trustworthiness criteriaInt J Qual Methods201716113
  • RobinsonJElkanRHealth Needs AssessmentLondonChurchill Livingstone1996
  • HenninkMMKaiserBNMarconiVCCode saturation versus meaning saturation: how many interviews are enough?Qual Health Res20162759160827670770
  • TongASainsburyPCraigJConsolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groupsInt J Qual Health Care200719634935717872937
  • ClementeDLeonLFosterHCarmonaLMindenKTransitional care for rheumatic conditions in Europe: current clinical practice and available resourcesPediatr Rheumatol Online J20171514928599656
  • Le RouxEMellerioHGuilmin-CréponSMethodology used in comparative studies assessing programmes of transition from paediatrics to adult care programmes: a systematic reviewBMJ Open201771e012338
  • HelgesonVSNovakSAIllness centrality and well-being among male and female early adolescents with diabetesJ Pediatr Psychol200732326027216837739
  • LuyckxKSeiffge-KrenkeISchwartzSJIdentity development, coping, and adjustment in emerging adults with a chronic illness: the sample case of type 1 diabetesJ Adolesc Health200843545145818848673
  • FerroMABoyleMHSelf-concept among youth with a chronic illness: a meta-analytic reviewHealth Psychol201332883984823477575
  • SchwartzSJPetrovaMFostering healthy identity development in adolescenceNat Hum Behav201822110111
  • HeathGFarreAShawKParenting a child with chronic illness as they transition into adulthood: a systematic review and thematic synthesis of parents’ experiencesPatient Educ Couns20171001769227693084
  • FernandesSMO’Sullivan-OliveiraJLandzbergMJTransition and transfer of adolescents and young adults with pediatric onset chronic disease: the patient and parent perspectiveJ Pediatr Rehabil Med201471435124919937
  • van StaaASattoeJNYoung adults’ experiences and satisfaction with the transfer of careJ Adolesc Health201455679680325149686
  • WHOGrowing up unequal: gender and socioeconomic differences in young people’s health and well-being. Health behaviour in school-aged children (HBSC) study: international report from the 2013/2014 survey Available from: http://www.euro.who.int/__data/assets/pdf_file/0003/303438/HSBC-No.7-Growing-up-unequal-Full-Report.pdf?ua=1Accessed July 4, 2018
  • WalshJMMcPheeSJA systems model of clinical preventive care: an analysis of factors influencing patient and physicianHealth Educ Q19921921571751618625
  • SurisJCDominéFAkréCLa transition des soins pédiatriques aux soins adultes des adolescents souffrant d’affections chroniques [The transition from pediatric care to adult care of adolescents suffering from chronic conditions]Rev Med Suisse200816114411444 French
  • MalivoirSCourtillotCBachelotAChakhtouraZTéjédorITourainePUn programme d’éducation thérapeutique centré sur la transition des patients, avec endocrinopathie chronique, entre les services d’endocrinologie pédiatrique et adulte [A therapeutic education program centered on the transition of patients with chronic endo-crinopathy, from pediatric to adult endocrinology services]Presse Med2016455e119e129 French27180274
  • PomeyMPHihatHKhalifaMLebelPNéronAPatient partnership in quality improvement of healthcare services: patients inputs and challenges facedPatient Exp J201522942
  • KarazivanPDumezVFloraLThe patient-as-partner approach in health care: a conceptual framework for a necessary transitionAcad Med201590443744125607943
  • AmbresinAEBennettKPattonGCSanciLASawyerSMAssessment of youth-friendly health care: a systematic review of indicators drawn from young people’s perspectivesJ Adolesc Health201352667068123701887