Table 2.

Factors influencing brain donation decision of the reviewed literature

	Angelini et al. (2011)	Austrom et al. (2011)	Azizi et al. (2006)	Boise et al. (2017)	Eatough et al. (2012)	Garrick et al. (2009)	Harris et al. 2013)	Jefferson et al. (2013)	Lambe et al. (2011)	Millar et al. (2007)	Padoan et al. (2017)	Schnieders et al. (2013)	Stevens (1998)	Sundqvist et al. (2012)
Motivations to donate (individuals and families)
Altruism—the desire to help others	√	√	√	√	√	√	√		√	√	√	√	√	√
Altruism—the desire to help medical research/‘gift of hope’	√	√	√	√	√		√			√	√		√	√
Altruism—the desire to help better understand the disease	√	√		√							√
Altruism—personal or friends with a disease/prevent others suffering	√	√			√		√				√
Altruism—family history of disease/to help future generation and others	√	√		√	√		√			√	√		√
Altruism—a tiny step forward along with other people/to help others							√			√
Gratitude for past treatment/positive health care experience		√			√				√	√			√
Health literacy—knowledge about brain donation and research	√	√	√	√	√	√	√	√		√	√	√
Health literacy—knowledge/experience participating in other research								√					√	√
Health literacy—exposure to medical, healthcare, and research settings	√			√				√	√		√	√
Getting a definitive diagnosis		√			√		√		√
Involved in group discussion about brain donation with family members		√						√
Benefit to self or family members								√				√
Fulfilment due to donation—death may become meaningful and helpful	√			√			√			√	√
Education specifically about personal research benefits												√
Communication—positive discussion with healthcare professionals	√	√			√							√
Communication—early discussion about donation within the family	√	√		√	√					√		√
It was the ‘right choice’ to help medical research/somebody has to do it			√		√								√	√
Religious beliefs					√		√
Shan’t need brain/why destroy if it’s useful/recycling/avoid wastage					√								√
Culturally sensitive approaches to brain donation				√				√	√
Television or media													√
Motivation to donate (next-of-kin only)
Got some degree of comfort from making this donation	√		√							√
Fulfilling, respecting or knowing deceased’s wishes	√		√		√	√								√
The opportunity to donate was empowering										√
Wanted answers as to why the loved one had died										√
Barriers to donate (individuals and families)
Family against it/upset about it/consideration of other relatives’ wishes			√			√	√		√	√			√
Emotional stress (discomfort about the idea of donation)	√			√		√							√
Wish to keep the body whole			√	√		√							√
Need brain/need to be whole in next life											√		√
Can’t explain/no reason													√
Can’t see the point—let others do it, I’ve done enough													√
Lack of information—We want to help but don’t have enough information		√											√
Lack of information about the brain donation procedure itself		√								√
Fear—unknown (Don’t know enough about what happens after death)												√	√
Fear—not being really dead/feeling pain after death													√
Fear—integrity of the donor’s body/not knowing how the brain is used				√							√
Fear—disfigurement	√			√
Fear—knife cutting/too intrusive									√		√
Fear—encountered with negative images							√
Misconception—misunderstanding about brain donation procedures		√						√	√
Misconception—not knowing normal brains needed				√					√
Mistrust—racial discrimination in medical research (Tuskegee Study)				√				√	√
Mistrust—racial disparities in medical settings (African American)				√				√	√			√
Ineffective communication—negative experience with healthcare professionals		√			√		√		√	√
Inappropriate timing and process when donation request was made	√	√			√					√
Religious concerns	√	√	√	√		√					√	√	√
Logistic issues—worry about the practicality of funeral arrangement	√	√		√		√
Inconsistency among state law regarding powers of attorney (USA)		√
Barriers to donate (next-of-kin only)
Respecting or knowing the patient’s or deceased’s wishes/disliked	√	√	√			√				√			√	√
Conflict in the family about making a donation; therefore not donate			√
Insufficient time to make a decision						√
Retain image of deceased	√		√
Next of kin was a young person who felt unprepared to decide										√