{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,3]],"date-time":"2026-09-03T11:37:09Z","timestamp":1788435429612,"version":"build-2803163510"},"reference-count":55,"publisher":"Wiley","issue":"4","license":[{"start":{"date-parts":[[2025,6,9]],"date-time":"2025-06-09T00:00:00Z","timestamp":1749427200000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"},{"start":{"date-parts":[[2025,6,9]],"date-time":"2025-06-09T00:00:00Z","timestamp":1749427200000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/doi.wiley.com\/10.1002\/tdm_license_1.1"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Journal of Advanced Nursing"],"published-print":{"date-parts":[[2026,4]]},"abstract":"<jats:title>ABSTRACT<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Aim<\/jats:title>\n                    <jats:p>To explore why parents consent to or decline organ donation after their child's death and identify the factors that influence their decision\u2010making.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Design<\/jats:title>\n                    <jats:p>Mixed\u2010methods analysis of routinely collected quantitative and qualitative data from 594 cases in the United Kingdom between 2018 and 2024.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>Quantitative analysis of clinical and demographic variables of potential donors, including regression analyses examining associations with parental consent. Qualitative content analysis and frequency counts of anonymised clinical notes of parental discussions and decision\u2010making. Integration of quantitative and qualitative findings on similar phenomena of interest.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>For each additional life\u2010year of the child, the odds of parental consent increased by 6%; the odds of consent among white families were five times higher than those of non\u2010white families; and the odds of consent for donation after brainstem death were 1.78 times higher than those for donation after circulatory death. Parental non\u2010support was influenced by the perception that organ donation prolonged or altered end\u2010of\u2010life care, cultural and religious beliefs and the need for surgery. Factors facilitating consent included altruism, creating a positive legacy, and prior knowledge of organ donation. Parents fell into four decision groups: those who immediately consented, hesitated but consented, hesitated but declined and immediately declined.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>This study provides new insights and theories about which parents are more likely to consent to paediatric organ donation. Findings highlight a range of factors that shape parental decisions and the need for approaches tailored to the varied concerns and complexities that parents face in navigating end\u2010of\u2010life care for their child. Developing specific support strategies that acknowledge contextual, religious and procedural concerns may enhance consent rates and facilitate a more bespoke family\u2010centred approach to paediatric organ donation and palliative care. Other countries achieve better paediatric consent rates, suggesting there is potential to further improve policy and practice, underpinned by a programme of research.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Summary Statement<\/jats:title>\n                    <jats:p>\n                      <jats:italic>What is already known<\/jats:italic>\n                      : Internationally, there is a shortage of organs for paediatric transplants, and parental consent is the limiting factor in most high\u2010income countries. Paediatric organ donation is unique from adults, and there is limited research into why parents consent to or decline organ donation for their child.\n                      <jats:italic>What this paper adds<\/jats:italic>\n                      : This analysis identified a range of interconnected factors that could positively or negatively influence parental consent decisions, with emotional, logistical, procedural and religious factors acting as critical barriers to consent. Additionally, parents were categorised into four decision\u2010making groups that have distinct decision\u2010making patterns and characteristics.\n                      <jats:italic>Implications for practice and policy<\/jats:italic>\n                      : These findings provide a foundation for better understanding why parents choose not to consent to organ donation for their child, which can begin to inform the development of policies and practices that better create the conditions for consent and a more family\u2010centred approach in paediatric end\u2010of\u2010life care.\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Implications for the Profession and\/or Patient Care<\/jats:title>\n                    <jats:p>This study highlights critical factors predicting and shaping parental decisions and indicates a\u00a0need for approaches tailored to the emotional and logistical complexities that parents face. Specific support strategies that acknowledge contextual, religious and procedural concerns may facilitate a more bespoke family\u2010centred approach to paediatric end\u2010of\u2010life care and enhance organ donation consent rates.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Impact<\/jats:title>\n                    <jats:p>\n                      <jats:italic>What problem did the study address?<\/jats:italic>\n                      Internationally, there is a shortage of organs available for children in need of transplants. Parental consent for paediatric organ donation is a limiting factor in most high\u2010income countries. The emotive nature of a child's death makes paediatric organ donation complex and unique, and there is limited research on the factors influencing parental decision\u2010making and the reasons parents choose to consent to or decline organ donation after their child's death.\n                      <jats:italic>What were the main findings?<\/jats:italic>\n                      We identified a range of interconnected factors that could positively or negatively influence parental consent decisions, with emotional, logistical, procedural and religious factors acting as critical barriers to consent. For the first time, parents have been categorised into four decision\u2010making groups that have distinct decision\u2010making patterns and characteristics. A novel and prevalent factor that negatively impacted consent was that organ donation prolonged or altered end\u2010of\u2010life care, often due to organ donation being raised after plans had been made for end\u2010of\u2010life care. This highlights the need for health systems to adopt proactive and timely approaches to integrating paediatric organ donation with care pathways. This study also identified that parents were 1.78 times more likely to consent to organ donation via a donation by brain death pathway compared to a donation by circulatory death pathway.\n                      <jats:italic>Where and on whom will the research have an impact?<\/jats:italic>\n                      This is the largest study of paediatric organ donation outside of the United States (where the healthcare system is predominantly for\u2010profit and therefore a different model and context compared to the United Kingdom) and provides new insights and understandings that can assist Specialist Nurses in Organ Donation, clinical teams and palliative care specialists in tailoring their approach to end\u2010of\u2010life care to achieve the best consent outcome for each child, their parents and wider family. Findings provide a valuable foundation for the development of future research and developments in policy and practice in the United Kingdom and countries with similar health systems. Findings also include generalisable insights that can be utilised internationally, irrespective of the health system.\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Reporting Methods<\/jats:title>\n                    <jats:p>This study adhered to the Good Reporting of a Mixed\u2010Methods Study (GRAMMS) reporting standards.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Patient or Public Contribution<\/jats:title>\n                    <jats:p>Patients or the public were not involved in this study.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1111\/jan.17091","type":"journal-article","created":{"date-parts":[[2025,6,9]],"date-time":"2025-06-09T10:09:18Z","timestamp":1749463758000},"page":"3617-3638","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":5,"title":["Understanding Why Parents Say Yes or No to Organ Donation When Their Child Dies: Mixed\u2010Methods Study"],"prefix":"10.1111","volume":"82","author":[{"ORCID":"https:\/\/orcid.org\/0009-0004-1071-9921","authenticated-orcid":false,"given":"Ellie","family":"Crane","sequence":"first","affiliation":[{"name":"Bangor University School of Health Sciences  Bangor UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Angie","family":"Scales","sequence":"additional","affiliation":[{"name":"NHS Blood and Transplant  Bristol UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-0185-6639","authenticated-orcid":false,"given":"Leah","family":"Mclaughlin","sequence":"additional","affiliation":[{"name":"Bangor University School of Health Sciences  Bangor UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Roisin","family":"Hollinger","sequence":"additional","affiliation":[{"name":"NHS Blood and Transplant  Bristol UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Reinout J.","family":"Mildner","sequence":"additional","affiliation":[{"name":"Paediatric Intensive Care Unit Birmingham Children's Hospital  Birmingham UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-4238-5984","authenticated-orcid":false,"given":"Jane","family":"Noyes","sequence":"additional","affiliation":[{"name":"Bangor University School of Health Sciences  Bangor UK"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2025,6,9]]},"reference":[{"key":"e_1_2_15_2_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.transproceed.2009.06.039"},{"key":"e_1_2_15_3_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.38804.658183.55"},{"key":"e_1_2_15_4_1","doi-asserted-by":"publisher","DOI":"10.1177\/02692163221144084"},{"key":"e_1_2_15_5_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.322.7282.309"},{"key":"e_1_2_15_6_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.socscimed.2006.09.006"},{"key":"e_1_2_15_7_1","doi-asserted-by":"publisher","DOI":"10.1002\/9781118993811.ch21"},{"key":"e_1_2_15_8_1","unstructured":"Brierley J. 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