1 40 3 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 October 2024 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 October List 2024 URL Address <a href="http://doi.org/10.1016/j.anpedi.2024.07.005" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.anpedi.2024.07.005</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 Suffering in children and adolescents in paediatric palliative care in Spain: Psychometric properties of the qESNA scale Publisher An entity responsible for making the resource available Anales de Pediatria Date A point or period of time associated with an event in the lifecycle of the resource 2024 Subject The topic of the resource Spain; palliative therapy; psychologic assessment; Cronbach alpha coefficient; adolescent; anxiety; article; child; clinical practice; confirmatory factor analysis; controlled study; convergent validity; correlation coefficient; cross-sectional study; depression; diagnosis; emotional disorder; factor analysis; female; human; longitudinal study; major clinical study; male; mental disease; receiver operating characteristic; reliability; root mean squared error; sensitivity and specificity; social psychology Creator An entity primarily responsible for making the resource Toro-Perez D; Limonero JT; Bolance C; Guillen M; Navarro Vilarrubi S; Camprodon-Rosanas E Description An account of the resource Objective: To analyze the psychometric properties of the qESNA scale and its usefulness to assess the suffering of paediatric patients with life-limiting and/or life-threatening diseases (children with LLTC) in clinical practice. <br/>Method(s): Cross-sectional and longitudinal study in 58 patients in Spain (female, 32.8%; mean age, 15.6 [SD, 4.5]; age range, 8-23 years), with administration of the qESNA scale along with other scales to assess anxiety, depression, emotional changes and psychosocial functioning. We performed exploratory and confirmatory factor analyses and calculated goodness-of-fit indices were calculated; we assessed reliability by means of the Cronbach alpha and temporal stability and convergent validity through the intraclass correlation coefficient with scales used to assess psychological disorders and the specificity and sensitivity through ROC curves. <br/>Result(s): The factor analysis identified a 14-item scale with 3 factors, a comparative fit index of 0.93, a Tucker-Lewis index of 0.91 and a root mean square error of approximation of 0.07. the Cronbach alpha was 0.85 and the intraclass correlation coefficient was 0.66. The convergent validity was high for the correlation to the risk of depression (-0.69) and of anxiety (-0.60) and emotional changes (-0.59). The analysis of the ROC curves showed that a score of less than 81 would be indicative of suffering, with a sensitivity of 83.33% and a specificity of 93.48%. <br/>Conclusion(s): This study confirmed that the psychometric properties of the qESNA scale are good and the scale's usefulness as an instrument to detect emotional suffering in children with life-limiting or life-threatening illnesses in clinical practice.<br/>Copyright &#xa9; 2024 Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1016/j.anpedi.2024.07.005" target="_blank" rel="noreferrer noopener">10.1016/j.anpedi.2024.07.005</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). 2024 Adolescent Anales de Pediatría anxiety Article Bolance C Camprodon-Rosanas E Child Clinical Practice confirmatory factor analysis Controlled Study convergent validity correlation coefficient Cronbach alpha coefficient Cross-sectional Study Depression Diagnosis emotional disorder Factor Analysis Female Guillen M Human Limonero JT longitudinal study Major Clinical Study Male mental disease Navarro Vilarrubi S October List 2024 Palliative Therapy psychologic assessment receiver operating characteristic Reliability root mean squared error Sensitivity and Specificity social psychology Spain Toro-Perez D 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 May 2024 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 <a href="https://pedpalascnetlibrary.omeka.net/collections/show/123">May List 2024</a> URL Address <a href="http://doi.org/10.1177/02692163231225100" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/02692163231225100</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 People don't realise how much their past experiences affect them in adulthood': A qualitative study of adult siblings' experiences of growing-up with a sister/brother with a childhood life-limiting condition and their perceived support needs Publisher An entity responsible for making the resource available Palliative Medicine Date A point or period of time associated with an event in the lifecycle of the resource 2024 Subject The topic of the resource mental health; adult; article; female; human; male; quality of life; social support; palliative therapy; hospice; life expectancy; terminal care; anxiety; depression; interview; qualitative research; mental disease; emotionality; adolescent; questionnaire; thematic analysis; semi structured interview; childhood; brother; psychotherapy; sibling; social network; adulthood; hydrotherapy; family assessment; nightmare; single parent; sister Creator An entity primarily responsible for making the resource Kirk S; Pryjmachuk S Description An account of the resource Background: There is a lack of research about the experiences and impact of having a sibling with a life-limiting condition. Studies focus on the sibling experience during childhood but the experience and impact during adulthood is unknown despite the increased life-expectancy of children with life-limiting conditions. Aim(s): To explore adult siblings' perspectives on the experience of having a sister/brother with a childhood life-limiting condition and to identify their perceived needs and preferences for support. Design(s): A qualitative exploratory study design with data generated by semi-structured interviews and analysed using reflexive thematic analysis, underpinned by interpretivism. Setting/participants: Twenty-two siblings (17-42 years old) were recruited via a children's hospice in England. Result(s): The experience of having a sibling with a life-limiting condition changes over time in response to how understandings of the meaning of a life-limiting condition develop and changing roles/relationships with parents and siblings. These experiences have an enduring impact on adult sibling's mental health which is compounded by their unmet (and sometimes unrecognised) support needs in adolescence and adulthood. Siblings described the importance of support continuing into adulthood with a focus on the provision of psychotherapy and peer support. Conclusion(s): Having a sister/brother with a childhood life-limiting condition appeared to have a significant and ongoing impact on adult siblings but their support needs, particularly for psychotherapy and peer support, are overlooked. The findings highlight the importance of ensuring siblings are included in family assessments and that family-based interventions are developed to promote sibling-parent relationships.Copyright © The Author(s) 2024. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1177/02692163231225100" target="_blank" rel="noreferrer noopener">10.1177/02692163231225100</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). 2024 Adolescent Adult ADULTHOOD anxiety Article Brother childhood Depression emotionality family assessment Female Hospice Human hydrotherapy Interview Kirk S Life Expectancy Male May List 2024 mental disease Mental Health nightmare Palliative Medicine Palliative Therapy Pryjmachuk S Psychotherapy Qualitative Research Quality Of Life Questionnaire Semi Structured Interview Sibling single parent Sister social network Social Support Terminal Care Thematic Analysis 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 October 2019 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 October 2019 List URL Address <a href="https://academic.oup.com/pch/article/24/Supplement_2/e26/5506918" target="_blank" rel="noreferrer noopener">https://academic.oup.com/pch/article/24/Supplement_2/e26/5506918</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 Medical assistance in dying and minors-views of the Canadian pediatrician Publisher An entity responsible for making the resource available Paediatrics and Child Health (Canada) Date A point or period of time associated with an event in the lifecycle of the resource 2019 Subject The topic of the resource child; female; human; major clinical study; male; controlled study; terminal care; conference abstract; disability; pediatrician; health care system; conversation; intractable pain; medical care; mental disease; terminal disease Creator An entity primarily responsible for making the resource Catena G; Davies D Description An account of the resource BACKGROUND: Medical Assistance in Dying (MAID) has been a heavily debated topic in Canada over the last decade. Since the royal assent of Bill C-14 in 2016, MAID has been available to Canadians 18 years of age or older meeting specific eligibility criteria. As part of this Act, an independent review was initiated to evaluate requests made by mature minors for MAID and ultimately possible inclusion in further iterations of the Act. OBJECTIVE(S): Limited Canadian data is available on the role of MAID in mature minors or the views of health care practitioners on this topic. This study aims to assess the attitudes of Canadian health care practitioners surrounding MAID in minors and their willingness to participate in this process. DESIGN/METHODS: A survey was disseminated to members of the Canadian Paediatric Society, collecting information on attitudes surrounding MAID as it applies to minors, specifically mature minors, those with intolerable disability and mental illness. The survey also assessed the demographics of respondents, including type of practice and patient population. The results were analyzed using logistical regression to determine if there were correlations between practice variables and opinions surrounding MAID. RESULT(S): A 29% response rate was achieved (574/1979), with 487 participants completing all questions. Of the respondents, 46% were in favour that MAID should be eligible for mature minors experiencing progressive or terminal illness or intractable pain; 29% felt patients with intolerable disability should be eligible, while only 8% favoured extension in cases of intolerable mental illness. Lastly, 33% felt that MAID should never be extended to minors. There was no significant correlation between attitudes towards MAID and the respondent's type of practice, or if they work with minors suffering from life-threatening illness. Practitioners who felt their spiritual beliefs guide their opinions surrounding MAID were more likely to oppose eligibility for children (p<0.00001). Practitioners who had the experience of discussing MAID with parents or children were more likely to support extending MAID to mature minors (p=0.046). CONCLUSION(S): There exists a great variability in viewpoints amongst pediatric healthcare practitioners as it relates to extension of MAID to minors. As opinions vary based on factors including spiritual beliefs and conversations pertaining to end of life care, more time and research is warranted to further explore this topic in the context of the Canadian health care system. 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). 2019 Catena G Child conference abstract Controlled Study Conversation Davies D Disability Female Health Care System Human intractable pain Major Clinical Study Male Medical Care mental disease October 2019 List Paediatrics and Child Health (Canada) Pediatrician Terminal Care terminal disease