Up against the System: A Case Study of Young Adult Perspectives Transitioning from Pediatric Palliative Care
Advances in pediatric care have not provided the interdisciplinary support services required by those young adults with pediatric life-threatening conditions (pedLTCs) who live beyond childhood but have limited expectations to live past early adulthood. These young adults, the first generation to li...
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| Format: | Article |
| Language: | English |
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Wiley
2013-01-01
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| Series: | Nursing Research and Practice |
| Online Access: | http://dx.doi.org/10.1155/2013/286751 |
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| author | Karen Cook Harold Siden Susan Jack Lehana Thabane Gina Browne |
| author_facet | Karen Cook Harold Siden Susan Jack Lehana Thabane Gina Browne |
| author_sort | Karen Cook |
| collection | DOAJ |
| description | Advances in pediatric care have not provided the interdisciplinary support services required by those young adults with pediatric life-threatening conditions (pedLTCs) who live beyond childhood but have limited expectations to live past early adulthood. These young adults, the first generation to live into adulthood, face multiple challenges transitioning from a plethora of pediatric palliative services to scant adult health services. In a case study, using an innovative bulletin board focus group, we describe the complex interplay of the health, education, and social service sectors in this transition. Our descriptions include system deficits and strengths and the young adults’ resilience and coping strategies to overcome those deficits and move forward with their lives. Young adults with pedLTC need knowledgeable providers, coordinated and accessible services, being respected and valued, and services and supports that promote independence. We recommend implementation of multidisciplinary solutions that are focused on young adult priorities to ensure seamless access to resources to support these young adults’ health, educational, vocational, and social goals. The input and voice of young adults in the development of these services are imperative to ensure that multisystem services support their needs and life goals. |
| format | Article |
| id | doaj-art-c802233ca3ba40288184f1c71bf43d7c |
| institution | Kabale University |
| issn | 2090-1429 2090-1437 |
| language | English |
| publishDate | 2013-01-01 |
| publisher | Wiley |
| record_format | Article |
| series | Nursing Research and Practice |
| spelling | doaj-art-c802233ca3ba40288184f1c71bf43d7c2025-02-03T01:32:47ZengWileyNursing Research and Practice2090-14292090-14372013-01-01201310.1155/2013/286751286751Up against the System: A Case Study of Young Adult Perspectives Transitioning from Pediatric Palliative CareKaren Cook0Harold Siden1Susan Jack2Lehana Thabane3Gina Browne4School of Nursing, McMaster University, Faculty of Health Sciences, c/o Dr. Gina Browne, Health and Social Service Utilization Research Unit, McMaster Innovation Park, 175 Longwood Road South, Suite 210A, Hamilton, ON, L8P 0A1, CanadaDepartment of Pediatrics, University of British Columbia, Room F602A, 4500 Oak Street, Vancouver, BC, V6H 3N1, CanadaSchool of Nursing, McMaster University, Faculty of Health Sciences, Health Sciences Centre, Room 2J32, 1280 Main Street West, Hamilton, ON, L8S 4K1, CanadaDepartment of Clinical Epidemiology, Centre of Evaluation of Medicines, 1050 Main Street East, Level P1, Hamilton, ON, L8N 1G6, CanadaSchool of Nursing, Health and Social Service Utilization Research Unit, McMaster Innovation Park, 175 Longwood Road South, Suite 210A, Hamilton, ON, L8P 0A1, CanadaAdvances in pediatric care have not provided the interdisciplinary support services required by those young adults with pediatric life-threatening conditions (pedLTCs) who live beyond childhood but have limited expectations to live past early adulthood. These young adults, the first generation to live into adulthood, face multiple challenges transitioning from a plethora of pediatric palliative services to scant adult health services. In a case study, using an innovative bulletin board focus group, we describe the complex interplay of the health, education, and social service sectors in this transition. Our descriptions include system deficits and strengths and the young adults’ resilience and coping strategies to overcome those deficits and move forward with their lives. Young adults with pedLTC need knowledgeable providers, coordinated and accessible services, being respected and valued, and services and supports that promote independence. We recommend implementation of multidisciplinary solutions that are focused on young adult priorities to ensure seamless access to resources to support these young adults’ health, educational, vocational, and social goals. The input and voice of young adults in the development of these services are imperative to ensure that multisystem services support their needs and life goals.http://dx.doi.org/10.1155/2013/286751 |
| spellingShingle | Karen Cook Harold Siden Susan Jack Lehana Thabane Gina Browne Up against the System: A Case Study of Young Adult Perspectives Transitioning from Pediatric Palliative Care Nursing Research and Practice |
| title | Up against the System: A Case Study of Young Adult Perspectives Transitioning from Pediatric Palliative Care |
| title_full | Up against the System: A Case Study of Young Adult Perspectives Transitioning from Pediatric Palliative Care |
| title_fullStr | Up against the System: A Case Study of Young Adult Perspectives Transitioning from Pediatric Palliative Care |
| title_full_unstemmed | Up against the System: A Case Study of Young Adult Perspectives Transitioning from Pediatric Palliative Care |
| title_short | Up against the System: A Case Study of Young Adult Perspectives Transitioning from Pediatric Palliative Care |
| title_sort | up against the system a case study of young adult perspectives transitioning from pediatric palliative care |
| url | http://dx.doi.org/10.1155/2013/286751 |
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