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Baskin, Monica L.; Collins, Marietta H.; Brown, Fuse; Griffith, Jeana R.; Samuels, Denisse; Moody, Anissa L.; Thompson, Martha P.; Eckman, James R.; Kaslow, Nadine J.

doi:10.1023/a:1026206204009

Cited by 30 publications

(9 citation statements)

References 64 publications

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“…Although health care providers and policy planners' interest in and concern about adolescents and young adults with chronic conditions has increased significantly in the last decade (55), empirical studies of the most rudimentary issues of transition, especially from the point of view of the adolescent, remain rare. Further research is needed to gain more understanding of transition needs of young adults in order to facilitate development of policies and programs that are relevant and effective in meeting their transition needs.…”

Section: Discussionmentioning

confidence: 99%

“…Education should include information about the patient's condition (e.g., disease type, currently prescribed treatment regimen), current research findings, preventive health care strategies, and recognizing when medical intervention is needed. Formal structured education programs administered by health educators or providers can be developed (55) for provision in small groups or education can be provided by providers to individual patients during regularly scheduled medical appointments.…”

Section: Patient and Providermentioning

confidence: 99%

“…Psychologists and social workers on the multidisciplinary transition team are wellsuited to provide valuable feedback on the patient's psychological and emotional maturity and relay informed hypotheses on how the patient may be impacted by premature transition (55). In addition, they can assist in the development of interventions to help transitioning adolescents with SCD achieve empowerment, enhance self-efficacy, and acquire life skills that will assist them in becoming self-sufficient and independent, experiencing "their problems," and opportunities to practice newly acquired skills (e.g., assertiveness) and receive feedback on these skills (55).…”

Section: Psychosocial Servicesmentioning

confidence: 99%

“…In addition, they can assist in the development of interventions to help transitioning adolescents with SCD achieve empowerment, enhance self-efficacy, and acquire life skills that will assist them in becoming self-sufficient and independent, experiencing "their problems," and opportunities to practice newly acquired skills (e.g., assertiveness) and receive feedback on these skills (55). Groups for parents may be beneficial to help them to process their changing role from caretaker to support person and assist them to relinquish the role of gatekeeper of information from the provider and allow youth to have direct communication without censorship (14).…”

Section: Psychosocial Servicesmentioning

confidence: 99%

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Transition to adult care for adolescents with sickle cell disease: Results of a national survey

Telfair

Ehiri

Loosier

et al. 2004

International Journal of Adolescent Medicine and Health

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The objective was to present the 'voice' of adolescents with sickle cell disease (SCD) as part of the discussion of transition issues by identifying and documenting their expressed concerns and expectations, as well as what program priorities they perceive would facilitate a smooth transition to adult care. Cross-sectional data were collected by means of structured questionnaire interviews, using standard instruments. A volunteer sample of 172 adolescents with SCD aged 14 years and older still in pediatric care within community-based and medical center SCD programs across the United States was recruited. Statistically significant results indicated the top concerns of adolescents were: lack of information relating to their transition to adult care; fear of leaving the healthcare provider with whom they were already familiar; fear that adult care providers might not understand their needs; belief that an SCD transition program was needed and that it should focus on provider support; information provision about adult care programs; ways to meet adult care providers; and ways to help healthcare providers understand their needs. We conclude that many adolescents with SCD have concerns and fears about their transition to adult care. Based on findings from this study, it is recommended that transition programs address structural and interpersonal issues of adolescents and providers if they are to be successful. Strategies by which this can be achieved are recommended, including the need to encourage, support and provide assistance for peer education, outreach programs and peer-led instructions, since these hold great promise as approaches that are adolescentcentered and adolescent-delivered.

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Section: Discussionmentioning

confidence: 99%

Section: Patient and Providermentioning

confidence: 99%

Section: Psychosocial Servicesmentioning

confidence: 99%

Section: Psychosocial Servicesmentioning

confidence: 99%

See 2 more Smart Citations

Transition to adult care for adolescents with sickle cell disease: Results of a national survey

Telfair

Ehiri

Loosier

et al. 2004

International Journal of Adolescent Medicine and Health

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“…Central to patient readiness is patient education and information. A directly proportional relationship is identified between information provision and patient compliance such that, adolescents with SCD who are well-informed about SCD exhibit better management of their condition and adjust more easily to ACC than those with less knowledge [21]. McPherson et al [19] also suggest that information on the actual process of transition, such as future insurance coverage and navigating the adult medical system, should be delivered.…”

Section: Resultsmentioning

confidence: 99%

The Evidence Base for Transition Programmes for Adolescents with Sickle Cell Disease

Inusa¹,

Cabral²

2015

Pediat Therapeut

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Background: In the United Kingdom (UK), sickle cell disease (SCD) is one of the most common genetic disorders at birth and worldwide millions are affected with the disorder. Transitioning young people with chronic illness from paediatrics to adult care is a complex process and it needs to be a planned and individualized process. Objective: To review the existing literature on transition programmes for adolescents with SCD in the UK. Methods: Online databases were used to search for studies using the key words: 'sickle', 'adolescent', 'transition', 'England', 'UK'. Results: There are no studies that evaluate the efficacy of transition services for people with SCD in the UK. A multidisciplinary approach with the involvement of patients and parents is essential is important to the success of the transition programmes. This study encountered a number of obstacles in describing the evidence base for SCD transition programmes due to (i) limited well-designed research studies and (ii) the lack of evaluation of existing guidelines using clinical indicators. This is despite the fact that other aspects of SCD management have benefited from well-designed studies and randomised-control trials. Conclusion: In view of the increasing number of young people with SCD surviving to adulthood, there is a need to strengthen transition services to enable them to become independent adults. More good quality studies are necessary to create an evidence-base to inform ways to deliver better care in the UK.

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