1 40 2 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 Special Edition #2 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 Special Edition #2 URL Address <a href="http://doi.org/10.1111/jpc.14816" target="_blank" rel="noreferrer noopener">http://doi.org/​10.1111/jpc.14816</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 A name given to the resource After an end-of-life decision: Parents' reflections on living with an end-of-life decision for their child Publisher An entity responsible for making the resource available Journal of Paediatrics and Child Health Date A point or period of time associated with an event in the lifecycle of the resource 2020 Subject The topic of the resource adjustment; end-of-life decision-making; ethics; parent; support Creator An entity primarily responsible for making the resource Sullivan JE; Gillam LH; Monagle PT Description An account of the resource AIM: Parents' role as end-of-life decision-makers for their child has become largely accepted Western health-care practice. How parents subsequently view and live with the end-of-life decision (ELD) they made has not been extensively examined. To help extend understanding of this phenomenon and contribute to care, as a part of a study on end-of-life decision-making, bereaved parents were asked about the aftermath of their decision-making. METHODS: A qualitative methodology was used. Semi-structured interviews were conducted with parents who had discussed ELDs for their child who had a life-limiting condition and had died. Data were thematically analysed. RESULTS: Twenty-five bereaved parents participated. Results indicate that parents hold multi-faceted views about their decision-making experiences. An ELD was viewed as weighty in nature, with decisions judged against the circumstances that the child and parents found themselves in. Despite the weightiness, parents reflected positively on their decisions, regarding themselves as making the right decision. Consequently, parents' comments demonstrated being able to live with their decision. When expressed, regret related to needing an ELD, rather than the actual decision. The few parents who did not perceive themselves as their child's decision-maker subsequently articulated negative reactions. Enduring concerns held by some parents mostly related to non-decisional matters, such as the child's suffering or not knowing the cause of death. CONCLUSION: Results suggest that parents can live well with the ELDs they made for their child. End-of-life decision-making knowledge is confirmed and extended, and clinical support for parents informed. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1111/jpc.14816" target="_blank" rel="noreferrer noopener">10.1111/jpc.14816</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). 2020 2022 Special Edition 2 - Parent Perspectives Adjustment end-of-life decision-making Ethics Gillam LH Journal of Paediatrics and Child Health Monagle PT Parent Sullivan JE Support 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 March 2018 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 March 2018 List URL Address <a href="http://doi.org/10.1017/s1478951517001110" target="_blank" rel="noreferrer">http://doi.org/10.1017/s1478951517001110</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 A name given to the resource The enactment stage of end-of-life decision-making for children Publisher An entity responsible for making the resource available Palliative & Supportive Care Date A point or period of time associated with an event in the lifecycle of the resource 2018 Subject The topic of the resource end-of-life decision-making; life-limiting illness; paediatrics; Palliative Care; parental support Creator An entity primarily responsible for making the resource Sullivan JE; Gillam LH; Monagle PT Description An account of the resource OBJECTIVES: Typically pediatric end-of-life decision-making studies have examined the decision-making process, factors, and doctors' and parents' roles. Less attention has focussed on what happens after an end-of-life decision is made; that is, decision enactment and its outcome. This study explored the views and experiences of bereaved parents in end-of-life decision-making for their child. Findings reported relate to parents' experiences of acting on their decision. It is argued that this is one significant stage of the decision-making process. METHODS: A qualitative methodology was used. Semi-structured interviews were conducted with bereaved parents, who had discussed end-of-life decisions for their child who had a life-limiting condition and who had died. Data were thematically analysed. RESULTS: Twenty-five bereaved parents participated. Findings indicate that, despite differences in context, including the child's condition and age, end-of-life decision-making did not end when an end-of-life decision was made. Enacting the decision was the next stage in a process. Time intervals between stages and enactment pathways varied, but the enactment was always distinguishable as a separate stage. Decision enactment involved making further decisions - parents needed to discern the appropriate time to implement their decision to withdraw or withhold life-sustaining medical treatment. Unexpected events, including other people's actions, impacted on parents enacting their decision in the way they had planned. Several parents had to re-implement decisions when their child recovered from serious health issues without medical intervention. Significance of results A novel, critical finding was that parents experienced end-of-life decision-making as a sequence of interconnected stages, the final stage being enactment. The enactment stage involved further decision-making. End-of-life decision-making is better understood as a process rather than a discrete once-off event. The enactment stage has particular emotional and practical implications for parents. Greater understanding of this stage can improve clinician's support for parents as they care for their child. 2018-01 Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1017/s1478951517001110" target="_blank" rel="noreferrer">10.1017/s1478951517001110</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). 2018 end-of-life decision-making Gillam LH life-limiting illness March 2018 List Monagle PT Paediatrics Palliative & Supportive Care Palliative Care parental support Sullivan JE