Transition of Adolescents to Young Adulthood for Vulnerable Populations

Shaw, Tressia; DeLaet, David E.

doi:10.1542/pir.31-12-497

Cited by 20 publications

(18 citation statements)

References 5 publications

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“…The main barriers noted relate to patients, parents, organizations, environment, and care providers [12,13]. However, since transition is an emerging field, the number of studies is increasing and it is acknowledged that transition management requires more than a simple service approach as it involves the taking on of new roles and/or the adaptation of existing roles for young people and those around them [14,15,16,17].…”

Section: Introductionmentioning

confidence: 99%

Transition from Pediatric to Adult Healthcare: Assessment of Specific Needs of Patients with Chronic Endocrine Conditions

et al. 2012

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Background/Aim: Transition from pediatric to adult care is a challenging turning point. The aim was to evaluate the transition process and needs expressed by patients with chronic endocrine conditions at transition in order to ensure program optimization. Methods: Prospective assessment of the transition period was conducted through completion of standardized questionnaires given to targeted patients. Two types were created: (1) a general questionnaire (GQ) addressing universal aspects of transition, and (2) a specific questionnaire (SQ) exploring concerns related to each endocrine condition. Three endocrinopathies (congenital adrenal hyperplasia, hypogonadotropic hypogonadism and growth hormone deficiency) were selected for assessment since they present specific challenges requiring characterization. Results: Over the last decade, 244 patients in transition were registered in our department and 153 were included since they presented one of the endocrinopathies selected. A total of 73 subjects completed both the GQ and the SQ. Over 80% of the patients were satisfied with the transition process in terms of organization, accessibility and medical care. The actual age of transition corresponded for most to the age considered by patients as ideal for transition. SQs identified psychosexual issues that must be addressed more systematically. Conclusion: This study identified key elements allowing the creation of an improved transition program tailored for our center and for each endocrine condition studied.

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Section: Introductionmentioning

confidence: 99%

Transition from Pediatric to Adult Healthcare: Assessment of Specific Needs of Patients with Chronic Endocrine Conditions

et al. 2012

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“…Additionally, people with brain injury accessing these services were often mismatched with other people with very different disabilities, impacting upon the range of activities available in which to participate. When looking at available support services, much of the literature indicates that services are often reluctant to accept people with a cognitive impairment (Collins, Reiss, & Saidi, 2012;Cooley et al, 2011;Reiss et al, 2005;Shaw & DeLaet, 2010). Adult services typically are targeted to much older adults and therefore young people often feel uncomfortable within these environments (Osgood, Foster, & Courtney, 2010;van Staa et al, 2011).…”

Section: Service Availability Capacity and Access To Resourcesmentioning

confidence: 99%

“…The process of developing a transitional care plan allows both the young person, family and health provider to identify potential issues that may arise during the transition period and collaboratively problem solve solutions (Shaw & DeLaet, 2010;Kirk, 2008). Utilising a structured process during this planning facilitates collaboration between all necessary stakeholders, helping to minimise confusion for families (Bent et al, 2002).…”

Section: Formal Processesmentioning

confidence: 99%

“…Kirk (2008) reflected that this may be difficult to achieve given the wide variation which occurs between adult service availability and capacity to take on new referrals. Regardless of the specific age, it is broadly agreed that transition should occur at a time of wellness for the young person not as a result of medical crisis (Huang et al, 2011;Shaw & DeLaet, 2010).…”

Section: Optimal Timing Of Transitionmentioning

confidence: 99%

“…This creates anxiety for some parents which should be addressed during a transition program. In order to adjust to this change in role, it is suggested that families need to be made aware of the differences between the paediatric and adult health care systems (Reiss et al, 2005;Shaw & DeLaet, 2010). By helping the family perceive the larger picture of the young person's journey to adulthood, their change in responsibilities for managing the young person's health can be normalised in context of other role changes occurring in the young person's life (Cooley et al, 2011;Gleeson & Turner, 2012;Reiss et al, 2005;Wang et al, 2010).…”

Section: Supporting the Changing Role Of The Parent Within Health Carementioning

confidence: 99%

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Young people with an acquired brain injury: Development of a pilot program to support their transition to adulthood

Francis¹

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The transition into adulthood is one of significance as societal expectations require a person to participate in adult occupations that contribute to their community. While the significance of transition has been well recognised, consideration is still being given to how this process can be best supported. Health care transition is seen as the planned movement of young people with chronic conditions from paediatric to adult orientated care systems. Processes surrounding transition to adult health services became topical when it was realised that young people have a heightened risk of being lost to medical follow up during this time, impacting their long term health outcomes. Discussion regarding what is best practice to facilitate transition between services has resulted in a number of guiding principles being advanced. The need to prepare and guide families through a gradual process, and address the medical, psychosocial and vocational needs of young people, underpins many of these principles. Acquired brain injury (ABI) can be described as any injury sustained to the brain and may be the result of trauma, stroke, hypoxia, surgery or infection. It has been identified that people who sustain an ABI during childhood are at risk of having poorer outcomes with respect to health, employment and lifestyle compared to their peers and as a result, may require support well into adulthood.The overall aim of this thesis was to ascertain the effectiveness of a formal transition program for young people with ABI. In order to answer the proposed question, two distinct studies were undertaken. The first study focused on program development. This study was exploratory in nature, and sought to gain an understanding regarding the complexities associated with transition for young people with ABI. The specific aims of Study 1 were to: The pilot was successful in meeting the third objective as participants reported overall high levels of satisfaction and client centred care. There were no significant improvements with respect to iv increased knowledge of services available during adulthood or in the level of functional independence of the young person during this period.This study provides insights into the complexities associated for young people with ABI at the time of transition. It indicates that a transition program is required to support these young people navigate these complexities. Preliminary findings indicate that the proposed transitional care program provides client centred care. Non significant change in performance and knowledge related outcome measures however, indicate that further research is required to refine this program.

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Primary care of a child with Rett syndrome

Briggs¹

2014

Journal of the American Association of Nurse Practitioners

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Purpose To discuss the history, incidence, pathophysiology, diagnostic criteria, disease staging, clinical presentation and physical exam findings, and role of the primary care provider (PCP) as they pertain to care for a child with Rett syndrome (RS). Data sources Review of published literature on and diagnostic criteria of RS. Conclusions RS is a devastating X‐linked neurodevelopmental disorder that affects females and a small percentage of males. RS is characterized by stereotypic wringing hand movements, social withdrawal, communication dysfunction, cognitive impairment, respiratory dysfunction, and failing locomotion. Diagnosis is generally made clinically despite available genetic testing. Advances in research have been beneficial; however, the pathophysiology of RS has proven to be elusive. RS is a complex disease that involves multiple organ systems. Implications for practice PCPs need to be aware of how to manage RS patients if they present to the primary care office, and need to be prepared to diagnose RS early, provide appropriate interventions and referrals, understand the challenges, and understand the goal of treatment. They also should be able to provide continuity of care, provide anticipatory guidance, and engage in shared decision with families and patients.

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Transition of Adolescents to Young Adulthood for Vulnerable Populations

Cited by 20 publications

References 5 publications

Transition from Pediatric to Adult Healthcare: Assessment of Specific Needs of Patients with Chronic Endocrine Conditions

Transition from Pediatric to Adult Healthcare: Assessment of Specific Needs of Patients with Chronic Endocrine Conditions

Young people with an acquired brain injury: Development of a pilot program to support their transition to adulthood

Primary care of a child with Rett syndrome

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