Dataset Information

'I think both of us drew strength from it': qualitative reflections from next of kin following the death and post-mortem brain donation of a loved one with brain cancer.

ABSTRACT:

Background

Glioblastoma, a high-grade primary brain cancer, has a median survival of approximately 14 months. Post-mortem brain donation provides insight to pathogenesis along with spatial and temporal heterogeneity. Post-mortem brain biobanking programs are increasing in number and the need to understand and improve the associated human experience is pressing. This study aims to qualitatively explore the experiences of next of kin (NOK) following the death and brain donation of a loved one and to understand the impact such programs have on NOK carers.

Method

We interviewed 29 NOK following the death of their loved one and subsequent brain donation. Thematic analysis was conducted on the transcribed, qualitative interviews.

Results

Four themes were identified; (1) Brain donation is a straightforward decision grounded in altruism and pragmatism; (2) Supporting donors is a source of comfort, pride and empowerment; (3) Brain donation can provide meaning for suffering and tragedy and (4) Perceptions of procedures and processes when supporting a loved one to donate. Insights into areas for improvement, for example transporting donors following a home death and the role of the body bag were also noted.

Conclusion

Supporting a loved one to donate their brain can be a positive experience providing a source of hope, empowerment and purpose for NOK. Data indicating areas for consideration are broadly relevant for improving the delivery of brain donation programs for future donors and their loved ones.

SUBMITTER: Griffin CP

PROVIDER: S-EPMC11334123 | biostudies-literature | 2024

REPOSITORIES: biostudies-literature

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Publications

'I think both of us drew strength from it': qualitative reflections from next of kin following the death and post-mortem brain donation of a loved one with brain cancer.

Griffin Cassandra P CP Carlson Melissa A MA Walker Marjorie M MM Lynam James J Paul Christine L CL

Palliative care and social practice 20240819

<h4>Background</h4>Glioblastoma, a high-grade primary brain cancer, has a median survival of approximately 14 months. Post-mortem brain donation provides insight to pathogenesis along with spatial and temporal heterogeneity. Post-mortem brain biobanking programs are increasing in number and the need to understand and improve the associated human experience is pressing. This study aims to qualitatively explore the experiences of next of kin (NOK) following the death and brain donation of a loved ...[more]

PMID: 39165564

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Project description:BackgroundCollecting post-mortem brain tissue is essential, especially from healthy "control" individuals, to advance knowledge on increasingly common neurological and mental disorders. Yet, healthy individuals, on which this study is focused, are still understudied. The aim of the study was to explore, among healthy potential brain donors and/or donors' relatives, attitude, concerns and opinion about post-mortem brain donation (PMBD).MethodsA convenience sampling of the general population (twins and their non-twin contacts) was adopted. From June 2018 to February 2019, 12 focus groups were conducted in four Italian cities: Milan, Turin, Rome and Naples, stratified according to twin and non-twin status. A qualitative content analysis was performed with both deductive and inductive approaches. Emotional interactions analysis corroborated results.ResultsOne hundred and three individuals (49-91 yrs of age) participated. Female were 60%. Participants had scarse knowledge regarding PMBD. Factors affecting attitude towards donation were: concerns, emotions, and misconceptions about donation and research. Religion, spirituality and secular attitude were implied, as well as trust towards research and medical institutions and a high degree of uncertainty about brain death ascertainment. Family had a very multifaceted central role in decision making. A previous experience with neurodegenerative diseases seems among factors able to favour brain donation.ConclusionsThe study sheds light on healthy individuals' attitudes about PMBD. Brain had a special significance for participants, and the ascertainment of brain death was a source of debate and doubt. Our findings emphasise the importance of targeted communication and thorough information to promote this kind of donation, within an ethical framework of conduct. Trust in research and health professionals emerged as an essential factor for a collaborative attitude towards donation and informed decision making in PMBD.

Project description:ContextThe COVID-19 emergency warrants reflection on how to improve future infectious disease pandemic preparedness and response (PPR). U.S. States took diverse approaches to COVID-19, with Florida's approach characterized by fewer restrictions on businesses and individuals. Despite the profound effects of the pandemic, there is a dearth of stakeholder-informed recommendations for PPR at the state level. This study aims to empirically examine stakeholder perspectives on PPR in Florida.Methods25 semi-structured interviews were conducted with former and current leaders from government, academia, and the private sector in Florida. Participants were asked about challenges encountered during COVID-19 and considerations for what should be done for future pandemics. Interview transcripts and notes were analyzed using qualitative content analysis (QCA).FindingsResults were organized into four main categories (recommendations for future actions, challenges in PPR, successes and failures during the COVID-19 response), across which six sub-categories were identified: public health systems capacities; mitigation of disease transmission; roles and relationships; messaging and information dissemination; minimizing other adverse effects of a pandemic; and public health culture. Considering the neglect of existing pandemic plans and jurisdictional tensions around decision-making during COVID-19, participants proposed implementing a pandemic playbook that delineates the responsibilities of relevant agencies and processes of waiving standard procedures. While many suggested closures and restrictions to avoid the spread of disease, others questioned the extent to which such strategies should be implemented.ConclusionsThis study corresponds with the need for consensus-building across ideological divisions, revealing tensions among federal, state, and county-level entities, as well as across state-level agencies. Participants defined successful pandemic response as not only comprising the mitigation of disease transmission, but also the minimization of adverse social and economic effects. Participants discussed strategies for a unified, well-coordinated approach to future pandemics that balances health and economic concerns.

Dataset Information

'I think both of us drew strength from it': qualitative reflections from next of kin following the death and post-mortem brain donation of a loved one with brain cancer.

Background

Method

Results

Conclusion

Publications

'I think both of us drew strength from it': qualitative reflections from next of kin following the death and post-mortem brain donation of a loved one with brain cancer.

Similar Datasets

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