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Background Brain cancer is a devastating and incurable disease that places a high burden of care on next of kin (NOK). NOK can play a core role in supporting end-of-life planning, including the decision to donate one's brain after death. Postmortem brain donation is crucial to research. As postmortem programs develop it is important to understand the experiences of NOK as they support a loved one in the donation decision. Methods Thirteen qualitative interviews were completed with NOK of people who had consented to donate their brains to the Mark Hughes Foundation (MHF) Biobank. A thematic analysis was carried out on the transcribed interviews. Results Four central themes were identified: (i) The carer role has additional responsibilities and psychological benefits when brain donation is being considered; (ii) Supporting a loved one to donate requires mutual trust, understanding, and a commitment to honor agency; (iii) Increasing awareness of brain donation is a priority for NOK, and (iv) Brain donation is seen as a natural continuation of the donor's altruistic values. Conclusions When a person with brain cancer decides to donate their brain to research, their NOK can experience additional burdens and benefits as the NOK–patient relationship evolves. Understanding this evolution and recognizing the importance of trust, advocacy, and altruism provides a guide for the integration of brain donation programs into clinical pathways and a basis for normalizing brain donation as an extension of organ donation frameworks. [ABSTRACT FROM AUTHOR]

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. Plain language summary: Understanding how loved ones feel about someone close to them donating their brain to research after their death from brain cancer The act of donating brain tissue after death from brain cancer is a huge gift to medical research and may have an impact on the ability of the scientific community to improve outcomes for people diagnosed with brain cancers. While we understand how valuable these donations are for research, we need more work to understand how these donations impact the people who donate and those who love and support them. This paper explores the experiences of people who have lost someone to brain cancer who then went on to donate their brain tissue after their death. Through the use of interviews, it explores the impact that the donation has on a loved one or next of kin from providing a source of comfort, empowerment, pride or an alternative to 'senseless' suffering and tragedy. It also provides areas that should be considered by people who are facilitating brain donations to ensure that any potential, harm or upset can be minimized. [ABSTRACT FROM AUTHOR]

Purpose: Post-mortem brain donation affords the opportunity to characterise disease by exploring global neuropathological changes. Such opportunities are essential to progress knowledge of CNS tumours such as Glioblastoma. A comprehensive understanding of the experience of consenting to brain donation is crucial to maximising consent rates while providing patient-centred care. This review aimed to synthesise the reported facilitators and barriers according to potential donors, next-of-kin (NOK) and clinician respondents. Design: Database searches included Embase, Medline, PsycINFO, Psychology and Behavioural Science and Scopus. Search terms focused on motivations, attitudes and psychosocial experiences of brain donation. Exclusions included organ transplantation and brain death. All studies were assessed for quality and validity using tools from the Joanna Briggs Institute. To determine perceptions of benefit and harm, a method guided by the thematic analysis of Braun and Clarke was employed to reflexively assess and identify common themes and experiences. Results: 40 studies (15 qualitative, 25 quantitative) were included involving participants with paediatric cancer, neurodegenerative and psychological diseases. Perceptions of benefit included benefit to future generations, aiding scientific research, avoidance of waste, improved treatments and the belief that donation will bring consolation or aid in the grieving process. Perceptions of harm included a perceived conflict with religious beliefs, disfigurement to the donor, emotional distress at the time of autopsy and discord or objections within the family. Conclusion: Brain donation can afford a sense of purpose, meaning and empowerment for donors and their loved ones. Careful strategies are required to mitigate or reduce potential harms during the consent process. [ABSTRACT FROM AUTHOR]

Introduction: Emotional support provided by health care professionals (HCPs) for people diagnosed with cancer is associated with improved outcomes. Support via social networks may also be important. Aims: To report among a sample of distressed patients and caregivers, (1) the importance attributed to different sources of emotional support (HCPs and social networks) by distressed cancer patients and caregivers; (2) the proportion who indicate they did not receive sufficient levels of emotional support; and (3) potential associations between respondents' demographic and clinical characteristics and reported lack of emotional support. Methods: This study utilised cross‐sectional data from telephone interviews collected during the usual‐care phase of the Structured Triage and Referral by Telephone (START) trial. Participants completed a telephone interview 6 months after their initial call to the Cancer Council Information and Support service and included recall of importance and sufficiency of emotional support. Results: More than two‐thirds of patients (n = 234) and caregivers (n = 152) reported that family and friends were very important sources of emotional support. Nurses (69% and 42%) and doctors (68% and 47%) were reported very important, while a lower proportion reported that psychologists and psychiatrists were very important (39%, and 43%). Insufficient levels of support were reported by 36% of participants. Perceptions of insufficient support were significantly associated with distress levels (p <.0001) and not having a partner (p =.0115). Conclusion: Social networks, particularly family, are an important source of emotional support. Higher levels of distress, those without partners, and caregivers may require targeted interventions to increase their access to emotional support. Emotional support provided by health care professionals (HCPs) and social networks for distressed patients and caregivers affected by cancer may supplement formalised psychological support. People with higher levels of distress, those without partners, and caregivers may require targeted interventions to increase their access to emotional support. [ABSTRACT FROM AUTHOR]

Routine cognitive assessment for adults with brain cancers is seldom completed but vital for guiding daily living, maintaining quality of life, or supporting patients and families. This study aims to identify cognitive assessments which are pragmatic and acceptable for use in clinical settings. MEDLINE, EMBASE, PsycINFO, CINAHL, and Cochrane were searched to identify studies published in English between 1990 and 2021. Publications were independently screened by two coders and included if they: (1) were peer-reviewed; (2) reported original data relating to adult primary brain tumor or brain metastases; (3) used objective or subjective assessments; (4) reported assessment acceptability or feasibility. The Psychometric And Pragmatic Evidence Rating Scale was used. Consent, assessment commencement and completion, and study completion were extracted along with author-reported acceptability and feasibility data. PROSPERO Registration: CRD42021234794. Across 27 studies, 21 cognitive assessments had been assessed for feasibility and acceptability; 15 were objective assessments. Acceptability data were limited and heterogeneous, particularly consent (not reported in 23 studies), assessment commencement (not reported in 19 studies), and assessment completion (not reported in 21 studies). Reasons for non-completion could be grouped into patient-factors, assessment-factors, clinician-factors, and system-factors. The three cognitive assessments with the most acceptability and feasibility data reported were the MMSE, MoCA, and NIHTB-CB. Further acceptability and feasibility data are needed including consent, commencement and completion rates. Cost, length, time, and assessor burden are needed for the MMSE, MoCA, and NIHTB-CB, along with potentially new computerized assessments suited for busy clinical settings. [ABSTRACT FROM AUTHOR]