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Dublin Core
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Title
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March 2021 List
Text
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Citation List Month
March 2021 List
URL Address
<a href="http://doi.org/10.1016/j.pedn.2020.12.015" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.pedn.2020.12.015</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Starting out in haziness': Parental experiences surrounding the diagnosis of their child's non-malignant life-limiting condition in Ireland
Publisher
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Journal of Pediatric Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
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Diagnosis; Children; Parents; Experience; Life-limiting
Creator
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Hurley F; Kiernan G; Price J
Description
An account of the resource
PURPOSE: To explore parental experiences surrounding the diagnosis of their child's non-malignant life-limiting condition. DESIGN AND METHODS: A qualitative descriptive study design using single-occasion one-to-one semi-structured interviews collected data from twenty-three parents of children diagnosed with non-malignant life-limiting conditions. FINDINGS: 'Starting out in haziness' was the central concept when parents' recounted the time they learnt of their child's diagnosis. Analysis revealed three main distinct but interconnected themes within this concept helping us better understand the experiences of parents at this particular time, those being: 'Entering a whole new world', 'Acquiring a learner permit' and 'Navigating the unknown territory'. CONCLUSION: Learning of their child's diagnosis was highly distressing for parents and was marked with emotional chaos. Parents' process of realization regarding the diagnosis was related to the diagnostic process. Information and communication needs should be individualized accordingly. The findings have implications for service provision, particularly with regard to how supportive care is delivered at this time.
Identifier
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<a href="http://doi.org/10.1016/j.pedn.2020.12.015" target="_blank" rel="noreferrer noopener">10.1016/j.pedn.2020.12.015</a>
Rights
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
Children
Diagnosis
Experience
Hurley F
Journal of Pediatric Nursing
Kiernan G
Life-limiting
March 2021 List
Parents
Price J
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
January 2022 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
January 2022 List
URL Address
<a href="http://doi.org/10.1111/cch.12923" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/cch.12923</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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With every fibre of their being': Perspectives of healthcare professionals caring for children with non-malignant life-limiting conditions
Publisher
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Child: Care, Health and Development
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
children; palliative care; life-limiting conditions; children with medical complexity; multidisciplinary
Creator
An entity primarily responsible for making the resource
Kiernan G; Hurley F; Price J
Description
An account of the resource
BACKGROUND: Children with non-malignant life-limiting conditions (NMLLCs) constitute the largest proportion of children requiring palliative care. In part, due to technological advances, growing numbers of such children are experiencing improved survival. Care is mostly provided at home by the family, with significant professional input at different points in the child's life trajectory. This study explored the experience of healthcare professionals caring for this cohort of children. METHODS: A qualitative descriptive study design using single-occasion one-to-one semi-structured interviews collected data from 12 healthcare professionals' including nurses, social workers and doctors. Data were analysed using thematic analysis. RESULTS: The findings highlighted the unfailing determination and dedication of healthcare professionals who provided care despite challenges with what seemed like 'with every fibre of their being'. Three key themes marked such strength and commitment; those were 'being there', 'being focused' and 'being strong'. 'Being there' explicitly highlighted expert care that was individualized and responsive to the child and family's unique needs. The provision of such care was often threatened and potentially compromised by the intricacies and challenges associated with children's palliative care (CPC) and service provision. 'Being focused' captured the sense that the healthcare professionals remained entirely focused on providing expert care despite these challenges. 'Being strong' epitomized the personal and professional impact on healthcare professionals who are working in this area and the manner in which they sustain themselves in 'being focused' and in 'being there'. CONCLUSIONS: The healthcare professionals demonstrated their unwavering commitment to deliver quality care required by children and families, however against a background of issues relating to organizational constraints. The findings have implications for education/service providers such as the need for specific palliative care education at both pre-registration level and continuing professional development.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/cch.12923" target="_blank" rel="noreferrer noopener">10.1111/cch.12923</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
Child: Care, Health and Development
Children
Children With Medical Complexity
Hurley F
January 2022 List
Kiernan G
Life-limiting Conditions
multidisciplinary
Palliative Care
Price J