Caring for an Underserved Population: Helping Pediatric Patients With Disabilities Transition to Adulthood

Improving the processes to assist adolescent patients in their transition into the adult health care community reveals the challenges encountered by adults with disabilities. A service gap between pediatric care providers and adult care providers is bridged by a program providing direct care, education, and advocacy.

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P1820THE DEVELOPMENT OF TRANSITION SERVICES IN RENAL CARE IN SYNERGY WITH YOUNG PATIENTS, PARENTS AND PEDIATRIC AND ADULT HEALTH CARE PROVIDERS: A CO-CREATION APPROACH

Nephrology Dialysis Transplantation ◽

10.1093/ndt/gfaa142.p1820 ◽

2020 ◽

Vol 35 (Supplement_3) ◽

Author(s):

Holvoet Els ◽

Wim Van Biesen ◽

Liesbeth Van Humbeeck

Keyword(s):

Health Care ◽

Chronic Kidney Disease ◽

Transition To Adulthood ◽

Health Care Providers ◽

Transition Process ◽

Adult Health ◽

Care Providers ◽

Adult Care ◽

Current State ◽

Adult Health Care

Abstract Background and Aims Healthcare transition to adulthood is recognised as challenging for adolescents and young adults (AYA’s) diagnosed with chronic kidney disease. Therefore the implementation of a transition programme adjusted to the needs of this patient population is of great importance. However, rarely are the views of young people or their families sought about the process or relevant outcome of their transition process. The aim of this study was to co-develop a transition programme that (1) enables health care providers to facilitate improving transition outcomes from the perspective of all stakeholders, and (2) enhances self-management by young people with chronic kidney disease. Method The development of this programme involved (1) an extensive review of currently existing best-practices (published and unpublished), and (2) understanding the current state of transition practice at our centre by means of semi-structured interviews and focus groups with patients, parents and health care providers of both pediatric and adult side. Results A working group was established incorporating a reflective process designed to develop a community of practice. During the process, participants’ experiences, lessons learned from the review of current state of evidence and practice, and appreciation of the (changing) context within which participants were working were incorporated. Analysis revealed 6 core elements as the foundation of the transition program: the AYA as the main focus, involvement of the parents, holistic approach, flexibility, forward-looking approach, continuity in guidance and follow-up. We also identified the need to distinguish the difference between transitioning from child to teenager to young adult and the actual transfer between paediatric and adult care. The actual final proposed transition programme can be divided in 4 phases: (1) introduction of the transition process to parents and patients, (2) guiding the patient to become more independent and to gain insight in the disease and related themes, (3) managing the transfer to adult health care and (4) finalizing the transition care plan. Adequate on-going communication and collaboration between paediatric and adult care seems essential for achieving a successful program. Conclusion This study addressed the development of a transition programme as a multi-actor process wherein patients, parents and health care providers significantly contribute to the transition to adulthood and transfer to adult care.

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Lost in Transition: Health Care Experiences of Adults Born Very Preterm—A Qualitative Approach

Frontiers in Public Health ◽

10.3389/fpubh.2020.605149 ◽

2020 ◽

Vol 8 ◽

Author(s):

Anna Perez ◽

Luise Thiede ◽

Daniel Lüdecke ◽

Chinedu Ulrich Ebenebe ◽

Olaf von dem Knesebeck ◽

...

Keyword(s):

Health Care ◽

Health Care Providers ◽

Health Care Services ◽

Adult Health ◽

Care Providers ◽

Very Preterm ◽

Care Services ◽

Health Care Satisfaction ◽

Care Satisfaction ◽

Adult Health Care

Introduction: Adults Born Very Preterm (ABP) are an underperceived but steadily increasing patient population. It has been shown that they face multiple physical, mental and emotional health problems as they age. Very little is known about their specific health care needs beyond childhood and adolescence. This article focuses on their personal perspectives: it explores how they feel embedded in established health care structures and points to health care-related barriers they face.Methods: We conducted 20 individual in-depth interviews with adults born preterm aged 20–54 years with a gestational age (GA) below 33 weeks at birth and birth weights ranging from 870–1,950 g. Qualitative content analysis of the narrative interview data was conducted to identify themes related to self-perceived health, health care satisfaction, and social well-being.Results: The majority (85%) of the study participants reported that their former prematurity is still of concern in their everyday lives as adults. The prevalence of self-reported physical (65%) and mental (45%) long-term sequelae of prematurity was high. Most participants expressed dissatisfaction with health care services regarding their former prematurity. Lack of consideration for their prematurity status by adult health care providers and the invisibility of the often subtle impairments they face were named as main barriers to receiving adequate health care. Age and burden of disease were important factors influencing participants' perception of their own health and their health care satisfaction. All participants expressed great interest in the provision of specialized, custom-tailored health-care services, taking the individual history of prematurity into account.Discussion: Adults born preterm are a patient population underperceived by the health care system. Longterm effects of very preterm birth, affecting various domains of life, may become a substantial burden of disease in a subgroup of formerly preterm individuals and should therefore be taken into consideration by adult health care providers.

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Susceptibility to Varicella-Zoster Virus Among Adults at High Risk for Exposure

Infection Control ◽

10.1017/s0195941700064936 ◽

1986 ◽

Vol 7 (9) ◽

pp. 448-451 ◽

Cited By ~ 28

Author(s):

Sherman J. Alter ◽

Jeanne A. Hammond ◽

Carol J. McVey ◽

Martin G. Myers

Keyword(s):

Health Care ◽

Varicella Zoster Virus ◽

Health Care Providers ◽

Total Population ◽

Prior Experience ◽

Adult Health ◽

Care Providers ◽

Varicella Zoster ◽

Hospital Employees ◽

Adult Health Care

AbstractThe adult health care provider who is susceptible to varicella zoster virus (VZV) represents a risk to her or himself and to patients. Nineteen percent of employees at this Children's Hospital had no or uncertain prior experience with VZV, and of these, 28% were found to be VZV susceptible, representing 5% of the total population of 2,730 hospital employees. During the 12 months of study, six of the potential 135 to 137 VZV-susceptible individuals acquired varicella. VZV-susceptible health care providers should be aware of their potential to both acquire and transmit VZV.

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Assessing readiness for transition from paediatric to adult health care: Revision and psychometric evaluation of the Am I ON TRAC for Adult Care questionnaire

Journal of Advanced Nursing ◽

10.1111/jan.12617 ◽

2015 ◽

Vol 71 (6) ◽

pp. 1324-1335 ◽

Cited By ~ 32

Author(s):

Melissa Moynihan ◽

Elizabeth Saewyc ◽

Sandra Whitehouse ◽

Mary Paone ◽

Gladys McPherson

Keyword(s):

Health Care ◽

Psychometric Evaluation ◽

Adult Health ◽

Adult Care ◽

Adult Health Care

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Emotional aspects of transiting HIV-infected adolescents to an adult health care in the southeast Brazil: A new challenge

European Psychiatry ◽

10.1016/s0924-9338(11)72596-2 ◽

2011 ◽

Vol 26 (S2) ◽

pp. 891-891

Author(s):

D.M. Machado ◽

R.C.M. Succi ◽

E. Galano ◽

E.R. Turato

Keyword(s):

Health Care ◽

Qualitative Content Analysis ◽

Qualitative Approach ◽

Hiv Care ◽

Adult Health ◽

Care Providers ◽

Health Care Teams ◽

Risk Of Rupture ◽

Emotional Aspects ◽

Adult Health Care

IntroductionAdolescents who was born with HIV, usually followed by paediatricians, present new challenges to health care teams during transition to adult medical care.ObjectiveTo discuss the emotional meanings of transitioning this group to adult health care.MethodClinical-qualitative approach with preliminary interviews conducted with eight HIV-infected adolescents followed at Federal University of São Paulo, Brazil. The data were processed through Qualitative Content Analysis and discussed based on theoretical psychodynamic frameworks.ResultsThe emergent themes were feelings of loss, risk of rupture of solid ties and unpreparedness to changes perceived as threatening. The transition to adult health care points to the need for developing patient self-care: “... I have to take more responsibility, I’m not ready, I’m still a teenager.” They also mentioned concerns in moving away from their paediatricians, “here is like a family. I feel like they care about me ... they are not just doctors... kind of teacher... mother, you know, “If I have to leave, I’ll cry... “Is there a place where the paediatricians could follow us until 30 years?” On the other hand, there were testimonies showing compliance or interest in changing, it's normal, I’m older, I have to stay right there”, “I’m the oldest ... it's weird to be among children.”ConclusionsAlthough adolescents understand the need of transition of health care, they manifest several difficulties. Individualized transitioning plans and increasing interaction between paediatric and adult HIV care providers could better address the needs of this unique population.

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Adolescent Transition to Adulthood and Adult Health Care: Needs of Urban Adolescents in Primary Care

Journal of Adolescent Health ◽

10.1016/j.jadohealth.2009.11.059 ◽

2010 ◽

Vol 46 (2) ◽

pp. S25

Author(s):

Crystal Malvoisin ◽

Kathy Tomaszewski ◽

Tina Cheng ◽

Renata Arrington-Sanders

Keyword(s):

Primary Care ◽

Health Care ◽

Transition To Adulthood ◽

Urban Adolescents ◽

Adult Health ◽

Health Care Needs ◽

Care Needs ◽

Adolescent Transition ◽

Adult Health Care

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Identifying Barriers Among Childhood Cancer Survivors Transitioning to Adult Health Care

Journal of Pediatric Oncology Nursing ◽

10.1177/1043454216631953 ◽

2016 ◽

Vol 34 (1) ◽

pp. 20-27 ◽

Cited By ~ 11

Author(s):

Joanne Quillen ◽

Holli Bradley ◽

Christina Calamaro

Keyword(s):

Health Care ◽

Cancer Survivors ◽

Childhood Cancer ◽

Online Survey ◽

Childhood Cancer Survivors ◽

Transition To Adult Care ◽

Adult Health ◽

Adult Care ◽

Convenience Sample ◽

Adult Health Care

The aim of this study was to identify and describe barriers of young adult childhood cancer survivors transitioning to adult health care within 5 years of leaving a pediatric oncology practice. Several barriers have been identified in the literature, but other obstacles as to why this vulnerable population may be avoiding health care are unknown. This is a descriptive pilot study of a convenience sample of childhood cancer survivors, currently 20 to 25 years of age, who were diagnosed at less than 21 years of age. The Transition to Adult Care Survey assessing survivor barriers is an online survey consisting of 15 questions, with a drop-down menu for answers and 2 open-ended questions. The survey was accessible by smartphone or computer. Standard descriptive statistics were used to describe variables of interest. Our population consisted of 48 childhood cancer survivors. Their mean age was 23.21 years. Only 74% reported following through with annual preventive screening, and 57% reported that they consider themselves at risk for further medical problems as a result of their cancer treatment. Lack of knowledge of the importance of health screening may be a potential barrier to consistent follow-up care.

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Therapeutic Pitfalls in the Transition of Neurologic Patients from Pediatric to Adult Health Care Providers

Neurologic Clinics ◽

10.1016/j.ncl.2020.09.015 ◽

2021 ◽

Vol 39 (1) ◽

pp. 243-256

Author(s):

Eugene R. Schnitzler ◽

Michael J. Schneck

Keyword(s):

Health Care ◽

Health Care Providers ◽

Adult Health ◽

Care Providers ◽

Adult Health Care

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Transition to Adulthood in Spina Bifida: Changing Roles and Expectations

The Scientific World JOURNAL ◽

10.1100/tsw.2007.179 ◽

2007 ◽

Vol 7 ◽

pp. 1890-1895 ◽

Cited By ~ 39

Author(s):

Shubhra Mukherjee

Keyword(s):

Spina Bifida ◽

Transition To Adulthood ◽

Independent Living ◽

Healthy Lifestyle ◽

Adult Life ◽

Care Providers ◽

Adult Care ◽

Transition Programming ◽

Lifestyle Choices ◽

Changing Roles

Survival to adulthood for people with Spina Bifida now exceeds 85% due to improvements in medical and surgical management. Rates remain lower than expected for community participation, healthy lifestyle choices, employment and independent living. The importance of transition programming to help adolescents with disabilities prepare for adult life roles is now understood. Literature currently is mainly conceptual or descriptive, but informs the process of developing transition program models. The need for competent and effective adult care providers is discussed. Both the transition to adulthood and the transfer of care to adult care clinics are important and distinct components of spina bifida lifespan care.

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