Conectar
To explore why parents consent to or decline organ donation after their child's death and identify the factors that influence their decision-making.
Mixed-methods analysis of routinely collected quantitative and qualitative data from 594 cases in the United Kingdom between 2018 and 2024.
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-making. Integration of quantitative and qualitative findings on similar phenomena of interest.
For each additional life-year 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-white 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-support was influenced by the perception that organ donation prolonged or altered end-of-life 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.
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-of-life 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-centred 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.
What is already known: Internationally, there is a shortage of organs for paediatric transplants, and parental consent is the limiting factor in most high-income 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. What this paper adds: 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-making groups that have distinct decision-making patterns and characteristics. Implications for practice and policy: 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-centred approach in paediatric end-of-life care.
This study highlights critical factors predicting and shaping parental decisions and indicates a need 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-centred approach to paediatric end-of-life care and enhance organ donation consent rates.
What problem did the study address? 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-income 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-making and the reasons parents choose to consent to or decline organ donation after their child's death. What were the main findings? 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-making groups that have distinct decision-making patterns and characteristics. A novel and prevalent factor that negatively impacted consent was that organ donation prolonged or altered end-of-life care, often due to organ donation being raised after plans had been made for end-of-life 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. Where and on whom will the research have an impact? This is the largest study of paediatric organ donation outside of the United States (where the healthcare system is predominantly for-profit 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-of-life 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.
This study adhered to the Good Reporting of a Mixed-Methods Study (GRAMMS) reporting standards.
Patients or the public were not involved in this study.
Opioid use disorder (OUD) is a chronic and severe psychiatric condition defined by a level of opioid use which significantly impairs interpersonal and social functioning. In the biopsychosocial model of addiction, research has shown that psychiatric, sociological and neurobiological factors individually affect OUD severity. However, how these factors interact in the determination of OUD severity remains poorly understood.
The Epigenetic Bonds of Opioid Use Profiles are a multidisciplinary project whose primary objective is to characterise psychiatric and social factors of OUD in a large cohort of patients. The secondary objectives are, first, to correlate psychosocial severity with blood-derived epigenetic biomarkers to provide a deeper understanding of determinants of OUD and, second, to examine over a 2 year follow-up the correlation between the evolution of OUD and psychosocial severity with epigenetic biomarkers at inclusion. An additional objective is to analyse the impact of drug consumption rooms on access to care for most severely affected patients with OUD. In total, 300 opioid users will be recruited at supervised injection sites in Strasbourg and Paris and at addiction care centres in Strasbourg and Lyon to explore four psychiatric (substance use disorders beyond opioids, depression, anxiety, post-traumatic stress disorder) and five social (social support and status, traumatic experiences, housing, imprisonment, access to care) factors. Opioid users will be followed for 24 months and reassessed for psychosocial factors at 3, 6, 12, 18 and 24 months. Opioid consumption will be measured in all subjects using questionnaires, complemented by toxicological screenings (mass spectrometry). Finally, DNA methylation and gene expression will be characterised in capillary blood using next-generation sequencing. Mixed models will be used to model the primary and secondary outcomes.
This ongoing study was approved by the French Ethics Committee ‘Sud Méditerranée III’ of University Hospital of Nîmes (approval 2023–2024, protocol IDRCB number 2022-A02477-36) and authorised by the French Data Protection Authority (authorisation decision DR-2023–277 in December 2023). Results will be presented in international and national conferences and published in peer-reviewed international journals.
Parents of children with neurodevelopmental disorders often experience high levels of stress that impact their mental health, yet few interventions focus on their well-being. To address this gap, we developed a mental health intervention based on emotional intelligence (EI), designed for delivery in healthcare settings. We hypothesise that enhancing EI can reduce parenting stress and improve psychological well-being. This study aims to assess the effectiveness, cost-effectiveness and feasibility of this EI-based intervention in Bangladesh.
This hybrid type 1 effectiveness-implementation study will include a cluster randomised controlled trial, an implementation analysis and an economic evaluation. Eight child development centres will be randomly assigned in a 1:1 ratio to intervention and waitlist control groups. A total of 480 parents (mothers and fathers) will be recruited. The intervention consists of interactive sessions on EI skills, supported by personal diaries and a mobile app. Data will be collected at baseline and 12 weeks postintervention using validated tools to assess EI, parenting stress, psychological well-being and other mental health outcomes. Implementation will be evaluated using mixed methods to assess feasibility, acceptability and fidelity. Cost-effectiveness will be determined through a cost–utility analysis of direct and indirect costs.
Ethical approval was granted by the Institutional Review Board of Bangladesh Medical University (BSMMU/2022/10733). Written informed consent will be obtained at each stage of data collection and intervention. Findings will be disseminated through open-access publications, plain-language summaries, academic conferences, community workshops and policy briefs. Data will be shared in open-access platforms to inform mental health strategies in low-resource settings globally.
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