Attitudes to brain donation for Parkinson's research and how to ask: a qualitative study with...

ORIGINAL RESEARCH

Attitudes to brain donation for Parkinson’s research and how to ask:

a qualitative study with suggested guidelines for practice

Clare Harris, Alice Kiger & Carl Counsell

Accepted for publication 16 June 2012

Correspondence to C. Harris:

e-mail: [email protected]

Clare Harris MSc RN

Research Nurse

Division of Applied Health Sciences,

University of Aberdeen, UK

Alice Kiger MA PhD RN

Senior Lecturer



Carl Counsell MRCP MD

Clinical Reader



HARR I S C . , K IGER A . , COUNSELL C . ( 2 0 1 2 ) Attitudes to brain donation for

Parkinson’s research and how to ask: a qualitative study with suggested guidelines

for practice. Journal of Advanced Nursing 00(0), 000–000. doi: 10.1111/j.1365-

2648.2012.06099.x.

AbstractAim. To describe factors people consider important in deciding whether or not to

donate their brain for research after death.

Background. Brain tissue retrieved at post-mortem is needed to further research

into neurological conditions such as Parkinson’s disease. Previous research has

focussed mainly on attitudes to organ donation for transplantation.

Design. Data were gathered and analysed using a qualitative approach based on

grounded theory.

Methods. Nineteen people who had made a decision about brain donation, five

people with Parkinson’s and 14 unaffected individuals, were identified through

theoretical sampling. Interviews conducted between September 2007–January

2008 were analysed to identify themes representing the concerns of participants,

when making a decision.

Findings. The three main themes identified were views and beliefs about post-

mortem, the importance of family and the things people do not talk about.

Although participants were more familiar with the concept of organ donation for

transplantation, unanimous support was expressed for brain donation for

research. However, beliefs about death and post-mortem, influence of family and

the difficulty in talking and thinking about things to do with death all posed

barriers to consent when actually asked to make a decision. For some, however,

being asked had acted as a catalyst, transforming previously held positive

attitudes into a decision to consent.

Conclusion. Guidelines for asking developed from these findings highlight the

importance of discussing the issue to raise awareness in potential donors,

involving family members, and giving accurate and appropriate information to

inform, reassure and to dispel misconceptions.

Keywords: attitudes, consent, decision-making, neurology, nurse–patient interac-

tion, nurses, nursing, qualitative approaches

© 2012 Blackwell Publishing Ltd 1

JAN JOURNAL OF ADVANCED NURSING

Introduction

Parkinson’s disease (PD) is the second most common

progressive neurodegenerative condition after Alzheimer’s

(Nussbaum & Ellis 2003). Patients suffer increasing

physical and cognitive disability with reduced quality of life

over time while family members commonly become the

principal carers and experience the physical, emotional, and

financial consequences of the role (Chrischilles et al. 1998).

Although important advances are being made towards a

better understanding of the causes of PD, the precise role of

genetic and environmental factors and the neuropathologi-

cal mechanisms that underlie its onset and progression are

not yet clear, limiting the potential for advances in treat-

ment (Litvan et al. 2007). Moreover, with no definitive

diagnostic test available during life, it is estimated that the

wrong clinical diagnosis may be given in 10–25% of cases

(Rajput et al. 1991, Hughes et al. 2001). The difficulties

currently associated with making an accurate diagnosis in

Parkinsonian disorders hamper clinicians in providing sup-

port and information to patients and their families with

regard to disease progression and prognosis, and when

planning for the future.

Background

The role of brain banks

Microscopic examination of brain tissue is the only way of

making a definitive diagnosis and the key to understanding

how Parkinsonian conditions develop. In addition, confir-

mation of diagnosis at post-mortem examination helps to

hone the diagnostic skills of clinicians, facilitating greater

understanding of the differences in presentation and out-

come of Parkinsonian disorders. Although animal models

are commonly used to aid understanding of the mecha-

nisms involved in conditions such as PD, ultimately studies

using human tissue are needed to validate them (Hulette

2003).

Brain banks have been established internationally to

collect and store brain tissue both from donors who had

PD or another Parkinsonian disorder (patients) and those

who did not (controls). Researchers may apply to a brain

bank for access to brain tissue, along with data relating

to the donor’s clinical presentation and progression during

life.

Obstacles to brain tissue collection

Despite the growing need for tissue for research purposes,

there has been a reduction in the number of post-mortems

performed in hospitals over the last 20 years (Barbour

2001, Burton & Underwood 2003, Bell 2004). Until

recently research and debate have focussed on the public’s

attitudes to organ donation for transplantation (Skowron-

ski 1997, DeJong et al. 1998, Randhawa 1998, Midgley

2000, Exley et al. 2002, Forbes et al. 2002, Gonzalez

2003, Azizi et al. 2006, Sanner 2006, Verheijde et al.

2007, Morgan 2008, Sque et al. 2008). In a questionnaire

to registered brain donors to elicit their views on organ

donation, Glaw et al. (2009) reported that 81% of respon-

dents had also pledged to donate organs or tissue for

transplantation. However, it is not clear to what extent

people’s views about donation of organs for transplanta-

tion are the same as or differ from their views about

donating organs for research. A recent quantitative study

(Kuhta et al. 2011) surveyed the views on brain donation

for research of patients at a Centre for Movement Disor-

ders in North America and found that while 78% of those

who completed the survey had not known about brain

donation for research, over half would be prepared to con-

sider it.

Fewer studies have gone further and examined the views

of people who have been asked and made a decision about

becoming tissue donors to support research after their death

(Beardsall et al. 1992, Stevens 1998, Kaye et al. 1999, Neu-

ropathology Group of the Medical Research Council Cogni-

tive Function and Ageing Study (MRC CFAS) 2001,

Schmitt et al. 2001, Boyes & Ward 2003). Furthermore,

these studies have not elicited the views of people with a

Parkinsonian disorder who have made a decision about

post-mortem brain donation for research and so it is not

clear to what extent their findings are representative of this

group.

The challenge for healthcare professionals

People affected by Parkinson’s, including patients, their

families and those taking part in associated research pro-

jects may be motivated to contribute to research that will

improve the outcome for others (Kuhta et al. 2011).

Increasingly nurses play an important role in ensuring con-

tinuity of care, both at home and during hospital admis-

sion, for patients and families affected by long-term

conditions such as PD. Their ongoing contact and support

foster confidence and trust, which may facilitate the discus-

sion of potentially sensitive subjects, such as organ dona-

tion for research, under appropriate circumstances. In

addition, nurses are often the first point of contact for peo-

ple contributing to research into these conditions. It is

therefore important that nurses involved in the care and

management of these groups are aware of the concerns of

potential donors and how best to broach the subject.

2 © 2012 Blackwell Publishing Ltd

C. Harris et al.

The study

Aim

The aim of this study was to identify and describe factors

people consider important when deciding whether or not to

donate their brain for research after death.

Design

A qualitative approach broadly based on grounded theory

was used to gather and analyse data (Glaser & Strauss

1967). Although this approach is generally used to generate

a theory to explain a phenomenon about which little or

nothing is known, Strauss and Corbin (2008) note that it is

not the aim of every researcher to build a theory and this

should not preclude them from the use of this framework,

or aspects of it, to achieve their own research goals.

Participants

Participants were recruited from the PINE study (Taylor

et al. 2006), an ongoing incidence and long-term follow-up

study of PD and other Parkinsonian disorders in north-east

Scotland, where suitable participants were additionally

asked to consider either post-mortem examination of the

brain at their local hospital or brain donation to the Parkin-

son’s UK Brain Bank in London, to confirm or refute the

diagnosis (patients), to exclude undiagnosed Parkinson’s

(controls without Parkinsonism) and to further wider

research into Parkinsonism (patients and controls). The

request was made by doctors and nurses working on the

study, providing they felt that patients would not be too

anxious or upset by it.

Theoretical sampling (Mason 2002) was used to capture

the range of views held by PINE study participants

recruited between November 2002–April 2004, who had

also been asked about post-mortem and brain donation.

The final sample (Table 1), made up of those willing and

well enough to take part, comprised 19 people who had

been asked and made a decision about post-mortem and

brain donation: 5 people with Parkinson’s (PINE study

patients), all of whom had consented to post-mortem or

brain donation and 14 unaffected individuals (PINE study

controls), 9 of whom had consented to post-mortem or

brain donation and 5 who had declined both (Figure 1).

PINE study patients PINE study controls

Consented to BD or PM

Participation in qualitative studyrequested

Participationnot requested

Participation in qualitative studyrequested

14 patients

Patients: Patients:Controls: Controls:

4 declined2 too unwell2 mentalincapacity1 died

7 declined interview3 no reply2 withdrawn fromstudy1 too unwell1 distressed whenasked, so notapproached forinterview2 mental incapacity1 died

2 reconsideringdecision so notasked11 declined2 no reply1 already donatingelsewhere1 mental incapacity1 died

2 declined2 no reply1 died

*5 agreed tointerview

**9 agreed tointerview

***5 agreed tointerview

7 controls 23 controls14 controls 17 patients9 patients

Undecided about BD or PM Declined BD and PM

40 patients were asked to considerbrain donation (BD) or post mortemexamination (PM) for research intoParkinson’s

44 controls were asked to consider braindonation (BD) or post mortemexamination (PM) for research intoParkinson’s

Figure 1 Identification of qualitative study sample (19) from PINE study patients and controls. Final Sample: *Five patients who consented

to brain donation; **Nine controls who consented to brain donation; ***Five controls who declined brain donation.


JAN: ORIGINAL RESEARCH Asking for consent to brain donation for Parkinson’s research

Data collection

Potential participants were sent an invitation and informa-

tion sheet by the principal investigator for the PINE study

(co-author CC). Those who returned the reply slip indicat-

ing their interest were contacted by telephone to discuss the

study further and decide whether or not they wished to par-

ticipate.

In seeking in-depth views of older adults on a sensitive

subject, the semi-structured one-to-one interview was cho-

sen as the most appropriate data collection instrument. This

type of interview enabled participants to identify and

explore the views and beliefs important to them (Glaser &

Strauss 1967). In addition, open questions pertaining to

possibly related issues identified in the literature permitted

exploration of the extent to which these issues were perti-

nent to this study sample and context (see interview sche-

dule Box 1). Interviews continued until data saturation was

achieved. Interviews lasted between 20–55 minutes and

were conducted between September 2007–January 2008 in

participants’ homes or in a University meeting room,

according to their preference. Transport was provided.

Box 1: Interview schedule

General questions around the subject of organ dona-

tion: What are your views on donating organs or

undergoing post-mortem examination for research?

• Could you tell me what you understand by these

terms?

Post-mortem examination

Organ donation

Brain bank

Autopsy

Brain bank donation

Tissue bank

• What personal experiences, if any, have helped shape

or influenced your views on organ donation for

research purposes (or any other purposes)?

• How do you feel about organ donation for research

versus organ donation for transplantation?

• What differences are there for you in thinking about

brain donation and donating any other organ (after

you die)?

• What bearing do you think the age of a person has on

the usefulness of their organs for research?

• Would you tell me about your beliefs about what hap-

pens when a person dies?

• What thoughts do you have about what you would

like to happen when you die?

• Does anything we have talked about just now bring to

mind anything you have seen on the TV, heard on the

radio or read in the papers?

Questions relating to when the participant was asked

to consider consenting to post-mortem examination or

brain donation for research into Parkinson’s:

I have got a list of questions to remind me, but

remember I am interested in finding out what things

were important or significant to you, so please do not

feel limited to answering my questions.

• What do you remember about being asked to consider

consenting to brain donation or post-mortem examina-

tion?

• How did you feel about the timing of the request?

• What were your thoughts on the suitability of the per-

son who made the request?

• How did you feel about the way the issue was raised?

• Was anyone with you when you were asked? How did

that feel?

• Was the initial discussion too much, too little or about

right?

• How did being asked make you feel?

• Do you remember receiving any written information?

• Do you feel you were supported by the PINE team in

making your decision?

• What do you remember about the timing of your deci-

sion?

• When you were making your decision, what factors

did you base it on?

• Who do you think should make the decision?

• What, if any, impact did your decision/being asked

have on how you feel about being in the PINE study/

taking part in research?

Ethical considerations

Ethical approval was obtained from the North of Scotland

Research Ethics Committee. The list of potential partici-

pants was screened to ensure no-one who was currently sig-

nificantly unwell, recently bereaved or had developed

incapacity was contacted (Figure 1). Every effort was made

to ensure that those who wished to participate understood

what was asked of them before written consent to the study

was obtained. The importance of privacy during the inter-

Box 1: (Continued)


C. Harris et al.

views was stressed to participants and assurance given that

data in all forms would be stored securely and reported in

a way that ensured anonymity. No PINE study participants

who remained undecided about brain donation at the time

of this study were approached to take part in it in case this

was perceived as bringing pressure to bear on them to make

a decision.

Data analysis

Interviews were recorded and transcribed verbatim by one

researcher (CH). In accordance with grounded theory prin-

ciples, data analysis proceeded concurrently with data col-

lection. Thus, data derived from one interview helped to

inform subsequent interviews. A thematic analysis was

performed on the data whereby codes denoting content

and meaning were assigned to the data in an iterative pro-

cess as the interviews progressed (Keenan et al. 2005).

From a core category, codes were grouped into four broad

categories comprising the subject matter of the interviews.

Additional analysis of the data resulted in the emergence

of three themes, representing the factors that were impor-

tant to participants in making decisions about post-mor-

tem and brain donation. Field notes reflected on the

course and content of the interview and provided contex-

tual information to aid analysis, and acknowledged the

subjectivity the researcher brought to the interview and

analysis (Mathers & Huang 2004). Data management was

aided by the use of Nvivo 7 computer-assisted data analy-

sis software program.

Rigour

The first three transcripts were read by a senior researcher

(co-author AK) in conjunction with the audiotapes, to

check for accuracy of transcription. Coding was discussed

by two researchers (CH and AK) to achieve concordance as

a measure of the credibility of the data and dependability

of subsequent identification of categories and themes (Van

Teijlingen & Forrest 2004).

Findings

The core category to emerge from the data was ‘thoughts

about brain donation’. Further coding resulted in the identi-

fication of four categories in the core category: ‘views and

beliefs about post-mortem and brain donation’, ‘end of life

issues’, ‘family matters’, and ‘things people don’t talk

about’. Data sorted in the categories to reflect their relative

significance and emphasis for participants when thinking

Table 1 Profile of study sample.

Gender

Age (years) at

completion of

education Marital status

Months since diagnosis

at time of asking for

brain donation

Consented or

declined brain

donation

Age (years) at time

of interview

Patients

Male 16 Married 12 Consented 84


Female 16 Married 12 Consented 84

Female 16 Single 24 Consented 69


Controls

Male 18 Married n/a Consented 82


Male 15 Widowed n/a Consented 91



Male 15 Divorced n/a Consented 75

Male 15 Widowed n/a Consented 85


Female 21 Married n/a Consented 79

Male 14 Married n/a Declined 83

Male 21 Widowed n/a Declined 85

Female 16 Widowed n/a Declined 86

Female 15 Single n/a Declined 70

Female 14 Married n/a Declined 78



about post-mortem and brain donation for research resulted

in the assimilation of data categorized under ‘end of life

issues’ into ‘family matters’ and ‘things people don’t talk

about’ and thus the identification of three themes: ‘views

and beliefs about post-mortem and brain donation’, ‘family

matters’ and ‘things people do not talk about’.

Themes

Each of the three themes encompassed several sub-themes

(Figure 2). Reporting of the results and the following dis-

cussion has focussed on those aspects of the identified

themes that were most important to the development of

guidelines for broaching the subject of brain donation. Illus-

trative quotes from control (CL) and patient (P) partici-

pants are given with their decision about brain donation:

BD indicates participants who consented to brain donation,

PM indicates those who consented to local post-mortem

examination of the brain, D indicates participants who

declined both options, and R denotes the researcher who

conducted the interviews.

Theme 1: Views and Beliefs about post-mortem and

brain donation

Altruism

Participants were unanimously of the opinion that organ

donation is a good thing (Figure 2a). The most commonly

expressed reasons for being willing to consent to brain

donation were altruistic:

I realize nothing might come of it that’s any use…but it might be

just something, a tiny step forward along with other people…It’s

just the possibility of something being useful (CL104 PM).

If nobody consents to these things you’re not going to get any fur-

ther…it may not help myself but it could help any of my family

(P8 BD).

Control participants understood the valuable contribution

that the donation of ‘normal’ tissue could make to the under-

standing of the pathophysiological processes that underlie PD.

Understanding

Participants’ understanding of the language used to talk

about post-mortem and brain donation for research varied

(Table 2). When asked what ‘organ donation’ meant to

them, the majority of participants’ responses related to

organ transplantation, indicating a greater familiarity with

this concept:

Once a person has died there may be lots of organs that could be

reused for someone, for instance eyes….same could be said for

heart, kidney, liver (CL172BD).

A few participants referred specifically to organ donation

for research purposes. However, while some participants

expressed a preference for donating organs for transplanta-

tion, none said they would not consider organ donation for

(a) Views and beliefs about PM and BD

(b) Family matters

(c) Things people don’t talk about

Views andbeliefsabout PMand BD

Role ofpersonalexperience

Research vtransplant

Altruism

Age ofdonor

Trust in healthprofessionals

MediaInfluence

Negativeimages-violenceanddisfigurement

The brain asa ‘special case’

Understanding theconcepts

Familymatters

Whosedecision isit?

Familyobjections

Sortingthings outfor thefamily

Familydiscussions

End of lifeissues

Things peopledon’t talk about

Talking in thecontext of thePINE study

Making adecision

Asking forconsent

Use ofhumour andlaughter

End of lifeissues

Figure 2 Diagrammatic representation of the themes representing

factors identified by participants as important ones in making deci-

sions about brain donation. (a) Views and Beliefs about PM and

BD. (b) Family Matters. (c) Things people do not talk about.

Table 2 Words and terms used when talking about brain dona-

tion for research whose meanings were not clear to participants,

together with a more meaningful alternative.

Less meaningful word/term More meaningful word/term

Autopsy Post-mortem examination

Tissue Brain

Tissue bank Brain bank


C. Harris et al.

research purposes. Some participants demonstrated an

appreciation of the importance of organs available for

research in developing expertise and knowledge in the field

of organ transplantation:

..by the time somebody’s getting a donation, you’ve got to have a

lot of research…done to prove that the organ transplant will help

(P143 BD).

Others expressed views, their own or those of their rela-

tives, indicating they did not understand that organs for

transplantation are most commonly retrieved from donors

who have suffered brain stem death where circulation is

maintained by a life support machine. This is distinct from

organs donated for research which can be removed from the

body of a person who has recently died. These views also

identified a lack of trust towards health professionals:

At the back of everyone’s mind is the element of trust, that every-

thing’s being done for you or, you know, they’re not just wanting

an organ for somebody else. I think that’s what prevents a lot of

people from (consenting) and makes you wonder (P8 BD).

Role of personal experience

Over half the participants reported that having PD or know-

ing someone with the condition motivated them to consent to

post-mortem or brain donation. Other experiences were cited

by participants as having influenced the decision they made,

both for and against consenting to post-mortem and brain

donation. However, a previous negative experience did not

always result in the participant declining post-mortem or

brain donation, as in this case:

Someone I know very well had seen a body at PM and didn’t like

the thought of it and I suppose that had influenced me to think I

wouldn’t like it either (P143 BD).

One participant believed that his wife had been ignored in

hospital because health professionals thought she was ‘a

hopeless case’. He stated this had coloured his views on

organ donation which resulted in him declining:

I’d willingly give any part of my body for research after I’m dead…

it worries me, human nature being what it is, that medical people

knowing that I’m a willing contributor or whatever I’ve got at the

time of death, might be too keen to get on to it and not waste a lot

of time and money pulling me back from the pearly gates or the

other place (CL2 D).

Negative images

Some participants described violent images associated with

post-mortem:

Somebody comes and stabs you about (P22 PM).

…..the rest of the family said no, no, they didn’t want her butchered

about like, didn’t want her to be cut up and so on (P49 BD).

Theme 2: Family matters

The opinions of family members, whether perceived by par-

ticipants or expressly stated, were important in the deci-

sions participants made about post-mortem and brain

donation (Figure 2b).

Whose decision is it?

Although most participants felt it should be their own deci-

sion about post-mortem and brain donation, they still

wished to have their family’s approval:

If I thought it was going to hurt her (his wife) in any way…I may

not have done it (CL 49 BD).

Data are extremely limited about the nature of families’

objections, partly due to the small number of declining par-

ticipants taking part in this study, but also because several

participants reported that they had not discussed these issues

with their families, or that it was hard to get to the root of

relatives’ objections. Of three participants who professed

support for brain donation, but had nevertheless declined

because of family objections, two had not actually discussed

the issue with their families. They reported just ‘knowing’ or

‘feeling’ that their relatives would not like it:

I had the idea that it would have been a good enough thing, but I

could see my wife sitting screwing up her face and she was just

thinking that it wouldn’t be a good idea (CL67 D).

Family discussions

Only one participant described having had a detailed dis-

cussion with her family when making the decision to con-

sent or not. Others related how family members had been

reluctant to be drawn into conversation about brain dona-

tion and consequently could only guess what their family’s

views were and the beliefs that underpinned them:

It’s difficult to put into words. It’s just knowing her as my wife

and how she thinks, I anticipated she wouldn’t be very keen for it

(CL172 BD).

Another reason for not broaching the subject with family

members was a wish to protect them:

If anything happened to (my husband) of course I would mention

it to them, but so long as he’s here I’ll just leave it. I can think of



one of my daughters who’d be distressed … if I spoke about that

kind of thing (CL104 PM).

Sorting things out for the family

Some participants had already arranged and paid for their

funerals, in part to limit the burden for relatives at the time

of death. They were concerned that families should be well

informed about the practicalities of arranging a funeral

around a post-mortem, that post-mortem would not cause

them any further distress, either in delaying the funeral, or

disfiguring the body:

…if a post-mortem would cause a big delay, because I feel it can

be traumatic for the family (P8 BD).

…it wouldn’t be the whole body…to go to be buried….I wouldn’t like

people to come along and think I wasn’t there, sort of thing (P143 BD).

Theme 3: Things people do not talk about

‘Things people do not talk about it’ emerged as an over-

arching theme (Figure 2c). The interviews produced an

abundance of evidence demonstrating that beyond the prac-

ticalities of funeral arrangements, things to do with the end

of life, including undergoing post-mortem and organ dona-

tion, are not widely discussed:

(CL54 BD) felt it was a topic ‘you avoid in general conversation’.

End of life issues

Participants identified difficulties in talking about the issues

raised when asked to consent to brain donation because it

involves the unknown (what happens when we die) and

requires us to acknowledge our own mortality and that of

those dear to us:

I just take each day as it comes and don’t tend to think too much

about what’s going to happen really, like even making a will…

things that’s going to affect the end of my life….. I think that’s

what it is, the end of your life (CL134 D).

…some of the people….may be frightened or something you know,

but I know a person is born and has to die one day (CL45 BD).

Asking for consent

Participants reported that they found it helpful to be asked

by someone they knew in the context of the PINE study

and that none had minded being asked, including those

who declined. One participant admitted being ‘shocked’

when asked:

Well it is a bit of a shock [laughs] when it was spoken about first

(..) but no, to me it just means nothing. My body doesn’t mean

anything to me once I’m dead (CL49 BD).

So what was the shock? What caused the shock? (R)

Well I’d never thought about it before (CL49 BD).

He reflected on how it might be from the researcher’s per-

spective, making the request:

You’ve a difficult job. ….I would never have liked to ask anybody

else (CL49 BD).

Those who declined stated they had not felt distressed or

pressurized by the request:

It (the information sheet) was very helpful….I didn’t feel guilty

about not doing it…I thought it’s a good thing, but it’s not for me

(CL134 D).

Some participants said that the request would be better

received if it did not come ‘out of the blue’ (CL67 D). We

should ‘build up a relationship’ (CL46 D), ‘break the ice’

(CL173 PM) by introducing the topic before asking and

‘make them aware that such a thing [brain bank] exists’ (P49

BD). With one exception, participants said that context,

together with the competence and manner of the person ask-

ing, was more important than the status of the person who

asked. Participants said that being asked by a suitably quali-

fied nurse who knew them was as acceptable as being asked

by a doctor and in some cases more appropriate:

I mean it was done in the environment of the hospital, in a very offi-

cial manner and all the rest of it, so it was fair enough (CL54 BD).

It would have been more relevant for you who’s been seeing me on

these check-ups (CL172 BD).

If you have somebody qualified for that kind of thing, I would have

just talked the same about it whether it had been the doctor or the

nurse yersel (sic) herself’ that had asked it (CL67 D).

Some suggested that talking about brain donation might

result in more people consenting:

The subject isn’t brought up and discussed enough, make people

make up their minds….very little’s said about it (P143 BD).

Some participants stated that being asked had provided

the catalyst transforming altruistic thoughts into action:

It’s simply the fact that when I attended PINE, they….asked me what

my outlook would be and I agreed ….,until I spoke to my sons and

we all agreed because of the cause it would help (CL37 PM).


C. Harris et al.

Discussion

Importance of asking

Although this and other studies have reported widespread

positive attitudes towards organ donation (see Box 2 for

summary of guidelines), this does not result in actual dona-

tions in anything like the same numbers (Human Tissue

Authority 2007). This study sought to understand the fac-

tors involved in decision-making among people who had

been asked to consider brain donation for research. Raising

the issue encouraged participants to review their views and

beliefs spanning topics that are not commonly or comfort-

ably discussed. Although all participants supported the idea,

not all had consented. Being asked, required participants to

weigh up the relative merits of their wish to help others,

the influence of personal experience, their understanding of

organ donation, their desire not to distress their family, and

their views about the end of life. Importantly, some partici-

pants said that the idea of donating organs for research sat

comfortably with their beliefs and inclinations. When

asked, it was not difficult for them to decide to consent.

However, this would not have occurred had they not been

made aware of the opportunity of donating organs for

research by being asked. Although being asked did not

always result in a decision to consent, no participant had

felt unduly distressed at being asked.

Box 2: Guidelines for asking for consent to brain donation

● Consider asking unless there are specific reasons not to.

● Ensure those asking are well informed

● Check the patient understands what is being asked of

them

● Emphasize the facts and practical arrangements

● Involve the family in the initial discussion where possi-

ble

● Give clear written information and contact details

● Encourage the patient to discuss the issue with family

members

● Allow time for patient and family to come to a deci-

sion

How to ask

Those making the request should be well informed to

address potential concerns. Participants described greater

familiarity with organ donation for transplantation, nega-

tive images of post-mortem and a lack of familiarity with

the language used to talk about organ donation. They were

unaccustomed to thinking and talking about issues sur-

rounding death. Concern expressed by some participants

and family members that healthcare personnel might priori-

tize their desire to obtain organs for research above sustain-

ing the lives of those who had agreed to be donors

highlighted the need for clear explanation of the circum-

stances and issues surrounding organ donation for research

distinct from those pertaining to organ transplantation.

Those asking should be able to explain the rationale for

the request and the process of donation with an awareness

of the range of possible responses that participants might

have. In a synthesis of work on attitudes to organ donation,

Sanner (2006, p. 143) identified altruism and ‘facticity’

(emphasizing the facts) as the two most imoportant pro-

donation factors. She suggested that the initial instinctive

inclination to recoil from the issue and decline may be miti-

gated by equipping people with the facts and giving them

time to ‘observe their underlying motives and drives’ (San-

ner 2006, p. 148). Sanner asserts that this process often

results in a decision where the facts prevail.

The only previous study of attitudes to post-mortem for

Parkinson’s implied only neurologists would ask patients

about donation (Kuhta et al. 2011) but the current study

found that the title of the person who asked was not impor-

tant. What was more important was that they had built up

a relationship with the patient, were well informed and

asked appropriately. PD nurses would fulfil all these

requirements and often know the patient’s family better

than the treating physician and, therefore, could deal with

any family questions. Ethically, nurses can be reassured that

most people in the study who were asked about donation

did not object to being asked even if they decided not to

consent, although it is important to note that people with

significant anxiety were not asked about post-mortem in

the PINE study.

Importance of family

The degree to which participants had discussed the issue

with relatives varied widely. One participant reported that

she had not even broached the subject, despite her own

inclination to consent, because she knew her daughter

would object. Garrick et al. (2006) found that 62% of

those who had agreed to brain donation for research had

not communicated their intention to their families, while

Stevens (1998) found that discussion with families increased

the consent rate. Participants in this study acknowledged it

was a difficult subject to raise with loved ones. Willingness



to communicate organ donation intention may be linked

to the desire of the individual to donate and this in turn

relates to how well informed the donor feels, their degree

of anxiety about donating and the anticipation that their

wishes will be supported by the family (Smith et al.

2004, McDonald et al. 2007, Verheijde et al. 2007).

Researchers do not always have the opportunity to dis-

cuss brain donation with relatives of potential donors.

The provision of a clear explanation that addresses the

practical concerns of both donor and family at the time

of request, reinforced with an information sheet to take

home, including contact details for any queries that may

arise, may encourage potential donors to embark on dis-

cussion with their families. Asking while the potential

donor is relatively well gives adequate time for the dis-

cussion with family to take place. Kuhta et al. (2011)

reported that the majority of respondents felt it was

acceptable to ask any time after the first consultation.

Study limitations

This study was conducted among a culturally homoge-

neous sample of older adults in the north-east of Scotland,

which may have limited the possible range of influences on

views about brain donation. Participants were recruited

from the PINE study because the aim was to identify the

views of people who had made a decision about brain

donation. However, their views may have been influenced

by their participation in the study and so may not reflect

those not taking part in research into neurological disor-

ders. Although the qualitative approach facilitated the

exploration of the subject in-depth, the number of partici-

pants was correspondingly small and so these findings may

not be reproducible in another population. In common

with other studies that have attempted to explore the

views of people who decline to donate organs (McPhee

et al. 1986, Connell et al. 1994, Stevens 1998, Exley et al.

2002, Morgan 2008) few PINE study patients who had

declined brain donation agreed to participate in this study.

All those who had declined brain donation and agreed to

take part in this study were controls and so the views of

people with a Parkinsonian disorder who had declined

brain donation were not ascertained. The range of views

may have been further limited because some potential par-

ticipants were not deemed well enough to invite to take

part in the interviews. However, in the study sample data

saturation was achieved. In addition, some of the views

expressed by participants who had declined brain donation

were echoed in other participants’ accounts of the opin-

ions, reactions, and beliefs of family members, which may

suggest that these views are more widely held than this

study directly identified.

Conclusion

This is the first qualitative study to report the views of

patients with PD and controls on brain donation, following

What is already known about this topic

● There is widespread public support for organ donation

for transplantation which is not reflected in actual

donation figures.

● Few studies have focussed on in-depth attitudes to

organ donation for research among those who have

been asked to consider it, so it is not clear to what

extent attitudes to organ donation for transplantation

are the same or different.

● Relatives’ reluctance to consent to organ donation on

behalf of a loved one may be mitigated by knowing

that donation is in accordance with the donor’s

wishes.

What this paper adds

● Although many participants experienced difficulty in

talking about issues related to their own death, the

majority said that the ongoing therapeutic relationship

patients often enjoy with nurses would be helpful in

facilitating a discussion about brain donation.

● Although all participants supported the idea of organ

donation for research, their understanding of organ

donation and post-mortem varied widely. Misconcep-

tions could contribute to a decision not to consent to

brain donation.

● Taking care of the family is an important factor for

those considering consenting to brain donation; they

do not wish their decision to add to the organizational

and emotional burden on relatives after their death.

Implications for practice and/or policy

● In an appropriate setting and context, nurses and other

health professionals should consider raising the subject

of brain donation for research.

● Those asking should involve the family in the discus-

sion wherever possible.

● Emphasis should be placed on the arrangements for

brain retrieval, assurance that the funeral will not be

delayed and that the body will not be disfigured.


C. Harris et al.

a request to consider it. Given the importance of post-mor-

tem in establishing an accurate diagnosis and in providing

material for research into the mechanisms that cause these

conditions, it is clearly important to know people’s views

and to incorporate them into guidelines for best practice in

asking for brain donation. Prior to this study there were no

such published guidelines. A review of the findings of this

study alongside what is already known about attitudes to

organ donation for research has resulted in the development

of evidence-based guidelines (Box 2). These guidelines will

help inform nurses working with this patient group, specifi-

cally PD nurse specialists, who are in an excellent position

to raise the issue of post-mortem with their patients.

This study found that asking people to think about brain

donation did not cause distress, but raised awareness,

encouraged people to think about it and, significantly, to

come to a decision. Family objections were identified as an

important barrier to consenting. Encouraging discussion

among family members and providing factual information

were seen to be helpful. Some participants said that simply

being asked and made aware were main reasons for con-

senting.

Nurses and other health professionals working with peo-

ple affected by PD should feel encouraged to broach the

issue of brain donation for research in the knowledge that

support for organ donation is widespread. This study found

that asking provides the catalyst for some people to trans-

late their wish to help others into action. Basing the request

for brain donation on guidelines developed from the factors

identified as important by people who had made a decision,

should help to ensure that the experience of being asked to

think about consenting to brain donation for research is as

positive, informative, and helpful to patients and their fami-

lies as possible, whatever their decision.

Acknowledgements

The authors thank all those who took part in the interviews

and provided the data for this study.

Funding

Funding in support of the study was provided by the Par-

kinson’s Disease Nurse Specialist Association (UK). The

PINE pilot study was funded by the BMA Doris Hillier

Award.

Conflict of interest

No conflict of interest has been declared by the authors.

Author contributions

All authors meet at least one of the following criteria (rec-

ommended by the ICMJE: http://www.icmje.org/ethi-

cal_1author.html) and have agreed on the final version:

● substantial contributions to conception and design, acqui-

sition of data, or analysis and interpretation of data;

● drafting the article or revising it critically for important

intellectual content.

References

Azizi L., Garrick T.M. & Harper C.G. (2006) Brain donation for

research: strong support in Australia. Journal of Clinical

Neuroscience: Official Journal of the Neurosurgical Society of

Australasia 13(4), 449–452.

Barbour V. (2001) Retaining trust. The Lancet 357(9253), 328.

Beardsall L., Barkley C. & O’Sullivan A. (1992) The response of

elderly community residents to request for brain donation: an

Interim report. International Journal of Geriatric Psychiatry 7,

199–202.

Bell J. (2004) Is post-mortem practice in terminal decline and

should we care? Practical Neurology 4, 257–259.

Boyes M. & Ward P. (2003) Brain donation for schizophrenia

research: gift, consent and meaning. Journal Medical Ethics 29,

165–168.

Burton J.L. & Underwood J.C.E. (2003) Necropsy practice after

the ‘organ retention scandal’: requests, performance and tissue

retention. Journal of Clinical Pathology 56(7), 537–541.

Chrischilles E.A., Rubenstein L.M., Voelker M.D., Wallace R.B. &

Rodnitzky R.L. (1998) The health burdens of Parkinson’s

disease. Movement Disorders 13(3), 406–413.

Connell C.M., Avery H. & Holmes S.B. (1994) Attitudes about

autopsy: implications for educational interventions. The

Gerontologist 34(5), 665–673.

DeJong W., Franz H.G., Wolfe S.M. & Nathan H. (1998)

Requesting organ donation: an interview study of donor and

nondonor families. American Journal of Critical Care 7(1),13–23.

Exley M., White N. & Martin J.H. (2002) Why families say no to

organ donation. Critical Care Nurse 22(6), 44–51.

Forbes C., Glanville J. & Kleijnen J. (2002) Psychological aspects

of organ and tissue retention: a scoping review. NHS Centre for

Reviews and Dissemination. Retrieved from http://webarchive.

nationalarchives.gov.uk/20100407224957/http://www.dh.gov.uk/

prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/

digitalasset/dh_4019818.pdf on 6 February 2012

Garrick T., Howell S., Terwee P., Redenbach J., Blake H. &

Harper C. (2006) Brain donation for research: who donates and

why? Journal of Clinical Neuroscience 13(5), 524–528.

Glaser B. & Strauss A. (1967) The Discovery of Grounded Theory.

Aldine Publishing, New York, pp. 2–6.

Glaw X.M., Garrick T.M., Terwee P.J., Patching J.R., Blake H. &

Harper C. (2009) Brain donation: who and why? Cell and Tissue

Banking 10(3), 241–246.

Gonzalez S. (2003) Attitudes, Knowledge and Personality

Differences that Influence Willingness Toward Organ Donation.

Psy. DThesis, University of Northern Colorado, USA. Retrieved



from http://proquest.umi.com/pqdweb?did = 764807791&sid =

2&Fmt = 2&cli entId = 57473&RQT = 309&VName=PQD on

6 February 2012

Hughes A.J., Daniel S.E. & Lees A.J. (2001) Improved accuracy of

clinical diagnosis of Lewy Body Parkinson’s disease. Neurology

57, 1497–1499.

Hulette C. (2003) Brain Banking in the United States. Journal

of Neuropathology and Experimental Neurology 62(7), 715–

722.

Human Tissue Authority (2007) Human Tissue Authority

Stakeholder Evaluation. Ipsos MORI. Retrieved from http://

www.hta.gov.uk/_db/_documents/2007-09-10_Ipsos_MORI_gen-

eral_public_qual_and_quant_report_final_200709101952.pdf on

6 February 2012.

Kaye J.A., Dame A., Lehman S. & Sexton G. (1999) Factors

associated with brain donation among optimally healthy elderly

people. The Journals of Gerontology 54A(11), M560–M564.

Keenan K.F., van Teijlingen E. & Pitchforth E. (2005) The analysis

of qualitative research data in family planning and reproductive

health care. Journal of Family Planning and Reproductive Health

Care 31(1), 40–43.

Kuhta T., Zadikoff C., Simuni T., Martel A., Williams K. &

Videnovic A. (2011) Brain donation – what do patients with

movement disorders know and how do they feel about it?

Parkinsonism & Related Disorders 17(3), 204–207.

Litvan I., Halliday G., Hallett M., Goetz C.G., Rocca W.,

Duyckaerts C., Ben-Shlomo Y., Dickson D.W., Lang A.E.,

Chesselet M.F., Langston W.J., Di Monte D.A., Gasser T., Hagg

T., Hardy J., Jenner P., Melamed E., Myers R.H., Parker D. Jr

& Price D.L. (2007) The etiopathogenesis of Parkinson disease

and suggestions for future research Part I. Journal of

Neuropathology & Experimental Neurology 66(4), 251–257.

Mason J. (2002) Qualitative Researching. 2nd edn, Sage, London,

pp. 124–125.

Mathers N., & Huang Y.C. (2004) Evaluating qualitative research.

In: Research into Practice (Crooke P.A. & Davies S., eds.), 2nd

edn, Bailliere Tindall, Edinburgh, p. 88.

McDonald D.D., Ferreri R., Jin C., Mendez A., Smail J., Balcom

P., Shoemaker S., Kamuzora P.L., Durham R. & Dibble J.

(2007) Willingness to communicate organ donation intention.

Public Health Nursing 24(2), 151–159.

McPhee S., Bottles K., Lo B., Saika G. & Crommie D. (1986) To

Redeem Them from death. The American Journal of Medicine

80, 665–671.

Midgley M. (2000) Biotechnology and Monstrosity: Why we

should pay attention to the ‘Yuk Factor’. Hastings Center Report

30, no.5. New York

Morgan S.E. (2008) In their own words: the reasons why people

will (not) sign an organ donor card. Health Communication 23

(1), 23–33.

Neuropathology Group of the Medical Research Council Cognitive

Function and Ageing Study (MRC CFAS) (2001) Pathological

correlates of late-onset dementia in a multicentre, community-

based population in England and Wales. The Lancet 357 (9251),

169–175.

Nussbaum R.L. & Ellis C.E. (2003) Alzheimer’s disease and

Parkinson’s disease. New England Journal of Medicine 348(14),

1356–1364.

Polit D.F. & Beck C.T. (2006) Essentials of Nursing Research, 6th

edn, Lippincott Williams & Wilkins, Philadelphia, USA. p. 13.

Rajput A.H., Rozdilsky B. & Rajput A. (1991) Accuracy of clinical

diagnosis in Parkinsonism- a prospective study. Le Journal

Canadien Des Sciences Neurologiques 18, 3, 275–278.

Randhawa G. (1998) Specialist nurse training programme: dealing

with asking for organ donation. Journal of Advanced Nursing 28

(2), 405–408.

Sanner M. (2006) People’s attitudes and reactions to organ

donation. Mortality 11(2), 133–150.

Schmitt A., Wetherby M.C., Wekstein D., Dearth C. & William R.

(2001) Brain donation in normal aging: procedures, motivations

and donor characteristics from the Biologically Resilient Adults

in Neurological Studies (BRAiNS) Project. The Gerontologist 41

(6), 716–722.

Skowronski J. (1997) On the psychology of organ donation:

attitudinal and situational factors related to the willingnesss to

be an organ donor. Basic and Applied Social Psychology 19(4),

427–456.

Smith S.W., Kopfman J.E., Lindsey L.L.M., Yoo J. & Morrison K.

(2004) Encouraging family discussion on the decision to donate

organs: the Role of the willingness to communicate scale. Health

Communication 16(3), 333–346.

Sque M., Long T., Payne S. & Allardyce D. (2008) Why relatives

do not donate organs for transplants: ‘sacrifice’ or ‘gift of life’?

Journal of Advanced Nursing 61(2), 134–144.

Stevens M. (1998) Factors influencing decisions about donation of

the brain for research purposes. Age and Ageing 27, 623–629.

Strauss A. & Corbin J. (2008) Basics of Qualitative Research, 3rd

edn. Sage, Los Angeles, p. 25.

Taylor K., Counsell C., Harris C., Gordon J. & Smith W. (2006)

Pilot study of the incidence and prognosis of degenerative

Parkinsonian disorders in Aberdeen, United Kingdom: methods

and preliminary results. Movement Disorders 21(7), 976–982.

Van Teijlingen E. & Forrest K. (2004) The range of qualitative

research methods in family planning and reproductive health

care. Journal of Family Planning and Reproductive Health Care

30(3), 171–173.

Verheijde J.L., Rady M.Y. & McGregor J.L. (2007) Negative

attitudes and feelings of well educated people about organ

donation for transplantation. Transplant International 20(10),

906–907.


C. Harris et al.

The Journal of Advanced Nursing (JAN) is an international, peer-reviewed, scientific journal. JAN contributes to the advancement of

evidence-based nursing, midwifery and health care by disseminating high quality research and scholarship of contemporary relevance

and with potential to advance knowledge for practice, education, management or policy. JAN publishes research reviews, original

research reports and methodological and theoretical papers.

For further information, please visit JAN on the Wiley Online Library website: www.wileyonlinelibrary.com/journal/jan

Reasons to publish your work in JAN:

• High-impact forum: the world’s most cited nursing journal and with an Impact Factor of 1·540 – ranked 9th of 85 in the 2010

Thomson Reuters Journal Citation Report (Social Science – Nursing). JAN has been in the top ten every year for a decade.

• Most read nursing journal in the world: over 3 million articles downloaded online per year and accessible in over 10,000 libraries

worldwide (including over 3,500 in developing countries with free or low cost access).

• Fast and easy online submission: online submission at http://mc.manuscriptcentral.com/jan.

• Positive publishing experience: rapid double-blind peer review with constructive feedback.

• Rapid online publication in five weeks: average time from final manuscript arriving in production to online publication.

• Online Open: the option to pay to make your article freely and openly accessible to non-subscribers upon publication on Wiley

Online Library, as well as the option to deposit the article in your own or your funding agency’s preferred archive (e.g. PubMed).



Attitudes to brain donation for Parkinson's research and how to ask: a qualitative study with...

Documents

Transcript of Attitudes to brain donation for Parkinson's research and how to ask: a qualitative study with...