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  1. Article ; Online: Health care transition planning: A potpourri of perspectives from nurses.

    Betz, Cecily L / Mannino, Jennifer E / Disabato, Jennifer A / Marner, Victoria

    Journal for specialists in pediatric nursing : JSPN

    2022  Volume 27, Issue 3, Page(s) e12373

    Abstract: Purpose: Nurses have important roles as members of the healthcare transition (HCT) planning interdisciplinary team. Nursing's scope of practice and framework of care brings a distinctive and complementary approach to this expanding field in pediatric ... ...

    Abstract Purpose: Nurses have important roles as members of the healthcare transition (HCT) planning interdisciplinary team. Nursing's scope of practice and framework of care brings a distinctive and complementary approach to this expanding field in pediatric care. It is therefore relevant to better understand the extent to which pediatric nurses are involved with the provision of HCT services and model development.
    Design and methods: This was a qualitative analysis of a national survey of pediatric nurses. A thematic iterative process was used to code data. Three coders separately analyzed responses and then met to compare and discuss until a final list of codes was achieved. The codes were further analyzed until themes and subthemes emerged. Throughout the process, disagreements were discussed and resolved until consensus was achieved.
    Results: A sample of 1814 pediatric nurses and nurse practitioners from two US professional organizations participated in this national survey to gather data on their involvement in HCT planning. This survey contained 17 items, one of which was an open-ended question stating: Is there anything else you would like to share about your role with the population of transitioning youth and young adults with chronic illness and/or disability? The analysis of responses provided by 154 nurses is presented. Initial coding resulted in 11 categories of data. Four major themes, including four subthemes, emerged from the analysis of responses: Support for the need for transition (subtheme: Nursing involvement); Guidance needed for professional practice (subtheme: Types of guidelines and training); Lack of service linkages to adult providers; and Difficulty letting go (two subthemes: Pediatric providers; Parents).
    Practice implications: These findings indicated strong support for the need of HCT services and the importance of nursing involvement. However, challenges to HCT implementation were identified that include systemic, psychosocial, and educational barriers. As this field of practice and research continues to grow, it is important that pediatric nurses recognize the opportunities to have a clinical voice to develop nurse-led HCT services and programs.
    MeSH term(s) Adolescent ; Child ; Humans ; Nurse Practitioners ; Nurses, Pediatric ; Patient Transfer ; Transition to Adult Care ; Young Adult
    Language English
    Publishing date 2022-04-06
    Publishing country United States
    Document type Journal Article ; Research Support, Non-U.S. Gov't
    ZDB-ID 2082595-X
    ISSN 1744-6155 ; 1539-0136 ; 1088-145X
    ISSN (online) 1744-6155
    ISSN 1539-0136 ; 1088-145X
    DOI 10.1111/jspn.12373
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  2. Article ; Online: Survey of US pediatric nurses' role in health care transition planning: Focus on assessment of self-management abilities of youth and young adults with long-term conditions.

    Betz, Cecily L / Mannino, Jennifer E / Disabato, Jennifer A

    Journal of child health care : for professionals working with children in the hospital and community

    2020  Volume 25, Issue 3, Page(s) 468–480

    Abstract: The survival rates of youth and young adults (YYAs) diagnosed with long-term conditions have improved considerably as 90% now enter adulthood; health care transition planning (HCTP) has emerged as a nursing practice priority. The aim of this national ... ...

    Abstract The survival rates of youth and young adults (YYAs) diagnosed with long-term conditions have improved considerably as 90% now enter adulthood; health care transition planning (HCTP) has emerged as a nursing practice priority. The aim of this national online survey was to investigate the extent to which nurses, recruited from two major United States pediatric nursing organizations are involved with HCTP including assessing YYA self-management abilities (SMA). Findings of a 9-item assessment of self-management abilities subscale of the nurses' role in HTCP tool are reported. The nurse respondents (
    MeSH term(s) Adolescent ; Adult ; Child ; Humans ; Nurses, Pediatric ; Patient Transfer ; Self-Management ; Surveys and Questionnaires ; Transition to Adult Care ; United States ; Young Adult
    Language English
    Publishing date 2020-09-01
    Publishing country England
    Document type Journal Article
    ZDB-ID 2299167-0
    ISSN 1741-2889 ; 1367-4935
    ISSN (online) 1741-2889
    ISSN 1367-4935
    DOI 10.1177/1367493520953649
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  3. Article ; Online: Health Care Transition Planning: Educational Needs of Pediatric Nurses and Pediatric Nurse Practitioners.

    Mannino, Jennifer Emilie / Disabato, Jennifer A / Betz, Cecily L / Hudson, Sharon M / Marner, Victoria A

    Journal of pediatric health care : official publication of National Association of Pediatric Nurse Associates & Practitioners

    2022  Volume 36, Issue 4, Page(s) e6–e16

    Abstract: Introduction: The purpose was to identify the educational needs of pediatric nurses and pediatric nurse practitioners providing direct care to transition-aged youth with chronic illness and disability and to identify strategies to develop health care ... ...

    Abstract Introduction: The purpose was to identify the educational needs of pediatric nurses and pediatric nurse practitioners providing direct care to transition-aged youth with chronic illness and disability and to identify strategies to develop health care transition planning (HCTP) expertise.
    Method: Mixed-methods descriptive analyses were performed on survey data extracted from a larger national study exploring the provision of HCTP activities performed by nurses of two pediatric nursing professional organizations.
    Results: Items querying educational needs were completed by 1,162 pediatric nurses serving in advanced practice and staff roles. Twenty percent reported having specialized HCTP education. Of which more than half received it outside of the workplace. Factor analysis revealed two constructs explaining 73.4% of the variance in nurses' reported level of knowledge.
    Discussion: HCTP education and the development of nurse-led services to facilitate optimal health care transitions outcomes are necessitated. Academia and service have a shared responsibility in educating nurses.
    MeSH term(s) Adolescent ; Aged ; Child ; Humans ; Nurse Practitioners/education ; Nurses, Pediatric ; Patient Transfer ; Pediatric Nurse Practitioners ; Pediatric Nursing/education ; Transition to Adult Care
    Language English
    Publishing date 2022-04-29
    Publishing country United States
    Document type Journal Article
    ZDB-ID 1036356-7
    ISSN 1532-656X ; 0891-5245
    ISSN (online) 1532-656X
    ISSN 0891-5245
    DOI 10.1016/j.pedhc.2022.04.001
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  4. Article ; Online: Pediatric Nurses' Role in Health Care Transition Planning: National Survey Findings and Practice Implications.

    Disabato, Jennifer A / Mannino, Jennifer E / Betz, Cecily L

    Journal of pediatric nursing

    2019  Volume 49, Page(s) 60–66

    Abstract: Purpose: Youth and young adults (YYA) with chronic illness and/or disability (CID) face numerous challenges in transition from pediatric to adult health care. Established evidence supports interdisciplinary team approaches to preparing youth and ... ...

    Abstract Purpose: Youth and young adults (YYA) with chronic illness and/or disability (CID) face numerous challenges in transition from pediatric to adult health care. Established evidence supports interdisciplinary team approaches to preparing youth and families for transition and transfer. The purpose of this national survey was to address a gap in current knowledge specific to pediatric nursing professionals' roles and responsibilities in health care transition planning (HCTP).
    Methodology: A quantitative descriptive study using a survey questionnaire validated by experts in the field investigated respondents' role in HCTP, inclusion of HCTP in job description, levels of HCTP knowledge, and ratings of importance of HCTP elements. A volunteer sample of 1814 respondents was drawn from two professional organizations.
    Results: Over 64% of respondents performed HCTP activities related to complex chronic illness management. Only 18% reported specialized training in HCTP. The highest-ranking items in regard to perceived importance were educating and supporting disease self-management and speaking with families about complex needs. Predictors of perceived importance were role, inclusion of transition planning in a job description, percentage of time in direct care, caring for those aged 14 years and older, and level of knowledge about HCTP.
    Conclusions: The findings highlight key aspects of the pediatric nurse role in HCTP and identify specific elements that can be addressed to support future HCTP role development.
    Practice implications: Pediatric nurses perform a vital role in HCTP for YYA with CID that may be enhanced with the inclusion of HCTP activities in job descriptions and specialized interdisciplinary HCTP training related to this emerging and growing population.
    MeSH term(s) Adolescent ; Child ; Disabled Children/rehabilitation ; Evaluation Studies as Topic ; Female ; Health Care Surveys ; Health Planning/organization & administration ; Humans ; Male ; Nurse's Role ; Nurse-Patient Relations ; Outcome Assessment, Health Care ; Patient Transfer/organization & administration ; Pediatric Nursing/organization & administration ; Predictive Value of Tests ; Quality Improvement ; Regression Analysis ; Risk Assessment ; Surveys and Questionnaires ; Transition to Adult Care/organization & administration ; United States ; Young Adult
    Language English
    Publishing date 2019-09-05
    Publishing country United States
    Document type Journal Article
    ZDB-ID 632731-x
    ISSN 1532-8449 ; 0882-5963
    ISSN (online) 1532-8449
    ISSN 0882-5963
    DOI 10.1016/j.pedn.2019.08.003
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  5. Article ; Online: The Development and Content Validation of a Self-reported Instrument to Explore the Nurse's Role in Healthcare Transition Planning for Youth and Young Adults With Chronic Illness and/or Disability (NR-HCTP).

    Mannino, Jennifer E / Disabato, Jennifer A / Betz, Cecily L

    Journal of pediatric nursing

    2018  Volume 43, Page(s) 56–61

    Abstract: Purpose: To develop an instrument to assess the nurse's role and responsibilities in healthcare transition planning (HCTP) for youth and young adults (YYA) with chronic illness and/or disability (CI/D) that will determine to what extent nurses are ... ...

    Abstract Purpose: To develop an instrument to assess the nurse's role and responsibilities in healthcare transition planning (HCTP) for youth and young adults (YYA) with chronic illness and/or disability (CI/D) that will determine to what extent nurses are involved with providing HCTP services; and identify the specific activities that nurses engage in when providing HCTP services.
    Design and methods: A panel of seven experts in the field were used to determine content validity.
    Results: The final NR-HCTP instrument contains a total of 68 items (17 main items, 5 containing sub items) representing activities that nurses engage in when providing HCTP services, their level and extent of involvement, and their level of knowledge in the areas of HCTP.
    Practice implications: An exploration of nurse's roles in HCTP for YYA with CI/D allows for discussion of current nursing practices in the transition process. The information obtained may be used to identify gaps in knowledge and practice guidelines, develop nursing core elements and educational materials to support nurses in their role, and inform nursing administrators in the development of appropriate HCTP position descriptions.
    MeSH term(s) Adolescent ; Adult ; Chronic Disease/therapy ; Disabled Children/rehabilitation ; Disabled Children/statistics & numerical data ; Disabled Persons/rehabilitation ; Disabled Persons/statistics & numerical data ; Female ; Health Planning/organization & administration ; Humans ; Long-Term Care/organization & administration ; Male ; Nurse's Role ; Organizational Innovation ; Outcome Assessment (Health Care) ; Patient Care Team/organization & administration ; Patient Transfer/organization & administration ; Quality Improvement ; Risk Assessment ; Self Report ; Transition to Adult Care/organization & administration ; United States ; Young Adult
    Language English
    Publishing date 2018-09-06
    Publishing country United States
    Document type Journal Article ; Validation Studies
    ZDB-ID 632731-x
    ISSN 1532-8449 ; 0882-5963
    ISSN (online) 1532-8449
    ISSN 0882-5963
    DOI 10.1016/j.pedn.2018.08.015
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  6. Article ; Online: Transition from Pediatric to Adult Specialty Care for Adolescents and Young Adults with Refractory Epilepsy: A Quality Improvement Approach.

    Disabato, Jennifer A / Cook, Paul F / Hutton, Laura / Dinkel, Tristen / Levisohn, Paul M

    Journal of pediatric nursing

    2015  Volume 30, Issue 5, Page(s) e37–45

    Abstract: Adolescents and young adults with refractory epilepsy are particularly vulnerable to serious medical and psychosocial challenges during transition from pediatric to adult care. Quality improvement methods were used to address the transition process on an ...

    Abstract Adolescents and young adults with refractory epilepsy are particularly vulnerable to serious medical and psychosocial challenges during transition from pediatric to adult care. Quality improvement methods were used to address the transition process on an academic medical campus. Outcomes achieved were decreased time from referral to first appointment in the adult clinic, H=8.2, p=0.004, r=0.43; and increased social work referrals using decision support, z=10.0, p=0.0006, OR=6.13. As measured by the 13-item Patient Activation Measure, pre-post change in patient activation as an outcome of self-management education was not statistically significant.
    MeSH term(s) Academic Medical Centers/organization & administration ; Adolescent ; Adult ; Child ; Cohort Studies ; Drug Resistant Epilepsy/diagnosis ; Drug Resistant Epilepsy/therapy ; Female ; Humans ; Male ; Patient Care Team/organization & administration ; Patient Education as Topic/organization & administration ; Patient Safety ; Pediatrics/methods ; Quality Improvement ; Risk Assessment ; Self Care ; Transition to Adult Care/organization & administration ; Treatment Outcome ; United States ; Young Adult
    Language English
    Publishing date 2015-09
    Publishing country United States
    Document type Journal Article
    ZDB-ID 632731-x
    ISSN 1532-8449 ; 0882-5963
    ISSN (online) 1532-8449
    ISSN 0882-5963
    DOI 10.1016/j.pedn.2015.06.014
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  7. Article: Successful Use of Intracavitary Bleomycin for Low-Grade Astrocytoma Tumor Cyst

    Disabato, Jennifer A. / Handler, Michael H. / Strain, John D. / Fleitz, Julie M. / Foreman, Nicholas K.

    Pediatric Neurosurgery

    2000  Volume 31, Issue 5, Page(s) 246–250

    Abstract: We report successful use of bleomycin in a low-grade astrocytoma tumor cyst of the tectal plate. A 6-year-old male underwent subtotal resection of a low-grade astrocytoma of the tectal plate followed by chemotherapy and proton beam radiation at age 2 and ...

    Institution Children’s Hospital and University of Colorado Health Sciences Center, Denver, Colo., USA
    Abstract We report successful use of bleomycin in a low-grade astrocytoma tumor cyst of the tectal plate. A 6-year-old male underwent subtotal resection of a low-grade astrocytoma of the tectal plate followed by chemotherapy and proton beam radiation at age 2 and a half. Despite resolution of the solid portion of the tumor, serial MRI showed enlargement of a bilobar tumor cyst 3 years after the original diagnosis. The patient developed progressive ataxia, short-term memory loss and dysconjugate gaze. Following stereotactic placement of an Ommaya reservoir into the cyst, Isovue contrast and CT scan were used to confirm the integrity of the cyst. Five consecutive daily doses of 3.0 mg of bleomycin were instilled into the cyst after removal of cyst fluid. The therapy was well tolerated in the outpatient setting, and the clinical findings resolved. Subsequent CT and MRI at 4 months and 2 years after bleomycin confirmed no recurrence of the tumor or cyst.
    Keywords Cyst ; Astrocytoma ; Bleomycin
    Language English
    Publishing date 2000-02-17
    Publisher S. Karger AG
    Publishing place Basel, Switzerland
    Document type Article
    Note Original Paper
    ZDB-ID 1091757-3
    ISSN 1423-0305 ; 1016-2291
    ISSN (online) 1423-0305
    ISSN 1016-2291
    DOI 10.1159/000028871
    Database Karger publisher's database

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