The Psychosocial Aspects of Donating Blood StemCells: The Sibling Donor Perspective

Susan Williams,1 Rachel Green,2* Anne Morrison,3 Douglas Watson,2

and Sister Susan Buchanan2

1Glasgow Caledonian University and Greater Glasgow Health Board, Glasgow, United Kingdom2Clinical Apheresis Unit, Glasgow Royal Infirmary, Glasgow, United Kingdom

3Southern General Hospital, Glasgow, United Kingdom

The collection of peripheral blood progenitor cells (PBPC) by apheresis has become common in relatedallogeneic donors. However, the acceptability of the procedure to donors has not been documented. Thepurpose of this baseline case series study was to evaluate the psycho-social dimensions of apheresis from theperspective of healthy sibling donors and to explore issues surrounding fully informed consent includingvoluntary donation. At the first interview to discuss donation, 17 consecutive human leucocyte antigens(HLA) identical sibling donors who chose to donate PBPC were recruited to the study. They then completedboth scales of the State-Trait Anxiety Inventory. The state scale was completed again immediately before firstapheresis. At the end of the final apheresis, the donors were interviewed again by an independent researcherusing a standardised questionnaire. All aspects of the procedure were well tolerated, including levels of anxietyand pain. Donors donated even if the relationship with their sibling was poor. However, some areasfor improvement were highlighted. Eight (47%) donors were asked to donate by their sibling or anotherclose relative, and this gave them no real volunteer status. Written information was judged important by11 (65%) donors, but the material used was limited. The possibility of a poor outcome for the recipient wasnot well understood. The content of the written documentation and the management of confidentialityin terms of donor volunteer status needed to be addressed. A further study regarding the follow-up needsof donors, including those where the outcome is poor, is underway. J. Clin. Apheresis 18:1–9, 2003.� 2003 Wiley-Liss, Inc.

Key words: peripheral blood progenitor cell collection;3 donor acceptability; siblings

INTRODUCTION

Cytokine-mobilised peripheral blood progenitorcells (PBPC) are increasingly being employed as analternative to bone marrow for allogeneic transplan-tation in patients with haematological malignancy[1–3]. Early sustained engraftment has been confirmedin the allogeneic4 setting and makes the use of PBPCsvery appealing [4]. The incidence of acute graft vs.host disease (GvHD) is no greater than in bonemarrow transplants. However, there is evidence ofincreased chronic GvHD [5,6]. This is in part relatedto the higher number of T and NK cells that arecollected with PBPC and re-infused [7] but does givethe potential for increased graft vs. leukaemia effect.

The procedure of PBPC collection is relativelysimple. It requires 5–6 days of granulocyte colonystimulating factor (GCSF) injections and 1–3 outpa-tient apheresis procedures where the donor’s blood isprocessed using a cell separator machine. In contrast,historically progenitor cells were collected from bonemarrow whilst the donor was under a short generalanaesthetic and involved multiple bone marrow as-pirates from the pelvic bones and at least one over-night stay in hospital.

Since 1996, PBPCs have been collected from siblingdonors as part of a local ethically approved study.Many of the donor-related issues have concentratedon the feasibility and clinical effects of cytokine mo-bilisation on healthy volunteers [8,9]. Normal donorshave a reliable and repeatable increase in white cellsand circulating PBPC. This allows collections of sig-nificant PBPC in response to 6–12 lg/kg/day GCSFfor 4–6 days. Leukopheresis does deplete plateletcount [10] and abnormalities of blood chemistries [11]do occur in response to GCSF but most resultantabnormalities return to baseline levels within a weekof completion of collections.

At this time, however, GCSF was unlicensed foruse in the allogeneic setting and the long-term safety

*Correspondence to: Dr. Rachel Green, Apheresis Unit, GlasgowRoyal Infirmary, North Glasgow Hospitals University andNHS Trust, Castle Street,1 Glasgow G4 0SF, UK.E-mail: rachelhagreen@hotmail.com

Received 22 March; Accepted 10 January 2003

Published online in Wiley InterScience(www.interscience.wiley.com)DOI: 10.1002/jca.10042

Journal of Clinical Apheresis 18:1–9 (2003)

� 2003 Wiley-Liss, Inc.

issues in healthy donors were unknown. It was judgedimperative that these donors should be fully informedand consent to participate in an ethically approvedstudy. Consequently, their care was provided by in-dependent staff who were not treating the recipient. Inour unit, it became practice for the potential donorsto be independently interviewed and examined in or-der to assess their general health, and also to receivedetailed information about both methods of dona-tion. The donors then made the ultimate decisionabout which procedure they preferred for their do-nations, providing they were medically fit. Any donorwith an underlying medical condition that requiredbone marrow harvesting rather than PBPC donationreceived medical follow-up but was excluded fromcomparative study.

Standardised local guidelines were produced toaddress the information that was given to donors.By July 1996, our unit had dealt with 19 alloge-neic sibling donors and obvious differences betweenthe clinical needs of donors land recipients wereidentified. In particular, it was realised that somesibling donors felt under considerable pressure todonate and in effect, they may have had no realchoice.

The psychosocial aspects of PBPC donation insiblings have not previously been documented al-though Auquier et al. [12] have explored pain andanxiety associated with PBPC donation by patients.Therefore, the purpose of this baseline study was toindicate any clinical or support interventions thatwould improve the care of sibling donors during theperiod surrounding their PBPC donation. We aimedto assess the general acceptability of PBPC donationto sibling donors, but particularly to record the painand anxiety involved in donating. We also aimed toexplore the circumstances surrounding the identifica-tion, selection, and real choices available to siblingdonors and to identify their information and supportneeds.

MATERIALS AND METHODS

Donors and Recruitment

Over a 13-month period, from July 1996 to August1997, all HLA identical sibling donors were invited totake part in this psychosocial study by a member ofthe apheresis unit staff at Glasgow Royal Infirmary.At this initial interview, using a standardised checklist(see Appendix A),5 donors received routine healthscreening and verbal information on both stem celland bone marrow donation. Also at this interview,donors were given an explanation of what would beinvolved in taking part in this study. Those who

agreed to participate were given an explanatory letterand asked to sign a study consent form.

Baseline Anxiety Measures

At the time of study recruitment, at the initial in-terview, participants were asked to complete bothstate and trait anxiety scores of the original Speil-berger State Trait Anxiety Inventory (STAI) [13]. TheSTAI is a well-established and validated tool formeasuring anxiety. Normative population data isonly available from North America (means -35 Traitand 32 State). Its use in relation to allogeneic dona-tion of PBPC has not been documented. The onlyidentified use of the STAI in PBPC donation involvedpatients using a French adaptation of the instrument[12]. The original version of the STAI consists of two20 statement self-report scales. One scale is designedto measure state, and the other trait, anxiety [13].State anxiety refers to the distress caused by a specificevent, and trait anxiety refers to a personality ten-dency towards anxiety. For all statements, each par-ticipant marked one of four options that best relatedto how they felt. Each response was scored on a scaleof 1–4 via a separate key. Scores for each of the scales,therefore, range from 20 (lowest anxiety) to 80(highest anxiety).

Procedural Assessments

On the first day of stem cell donation, in additionto routine care, the donors were asked again by amember of staff to complete the State Anxiety Scale[13]. During the period of recuperation after the finaldonation on the second day, donors were then inter-viewed by an independent researcher using a stan-dardised proforma that contained both open andclosed questions6 (see Appendix B). These questionsrelated to the causes of anxiety and pain, the feelingof closeness with the recipient sibling, experiencesof being a donor, and the information and supportneeds of donors throughout all stages of the process.The family dynamics were explored because it waspostulated that feelings of closeness towards therecipient either during childhood or in adult lifemight influence the enthusiasm to donate.

Perceived anxiety about the procedure was mea-sured using a 4-point rating scale. This scale was se-lected at this time because it provided a context inwhich to explore further the issues relating to anxiety.It also served as a quick secondary measure of anxietyand, therefore, acted as a consistency check of theSTAI state anxiety score obtained immediately on thefirst day of donation. The perceived level of worst

2 Williams et al.

pain was measured using a 100-mm horizontal visualanalogue scale (VAS). These scales are a common andwell-established measure of pain [14]. They have beenshown to be readily understood by users and havebeen shown to be more sensitive than graphic ratingscales. Horizontal scales have been shown to producea more uniform distribution of scores than verticalscales [15].

Analysis

Data were analysed using SPSS. The small num-bers involved and frequency distributions of re-sponses indicated that analysis should be restricted todescriptive statistics only.

RESULTS

Study Exclusions

All of the 20 potential donors agreed to participatein this study. Three donors chose to donate bonemarrow and were, therefore, excluded from the study.

Personal Characteristics

Nine donors were male and eight female. Both menand women donors were commonly in their earlyforties. Half described themselves as married and justover three-quarters had children. Fewer than half hadhad a surgical admission to hospital (Table I).

Family Characteristics of Donation

Three donors donated for an elder brother, eightfor an elder sister, three for a younger brother, andthree for a younger sister. The age gap between do-nors and recipients ranged from 1 to 11 years (TableI). Circumstances surrounding the request to donatewere recalled by 16 donors. In six (35%) cases, con-trary to guidelines, the donor was asked to donate bythe unit treating their sibling. Six (35%) other donorswere asked directly by their sibling. Two were asked

by their mothers, one by another sibling, and in an-other case the donor offered to donate. In terms offamily dynamics, 13 (77%) described themselves asclose or very close to their brother or sister now. Theother four described themselves as not close. Two hadhad arguments and the other two felt that living somedistance apart had affected their relationship. Eleven(65%) donors said that they and their siblings hadbeen close or very close as children. Generallyspeaking, those who were close as children hadmaintained that bond in adult life. Fourteen peoplesaid they had no hesitation in offering to donate. Thisincluded one donor who cited distance and the twowho had cited arguments as a reason for not feelingclose to their siblings.

When asked what influences the wish to donate fora sibling, 13 (77%) donors cited as the main influencethe family bond no matter their current relationshipwith the donor. Three people felt that if you couldhelp someone you should, and one person cited fearof his/her father as the main influence.

A total of three donors felt pressurised about someaspect of donating. Two felt pressurised into donatingby family members. One, a younger donor, by fear ofhis/her father, and the other, who described beingclose to his/her sibling, by the pressing needs of therecipient. One donor felt under pressure because his/her employers were uncooperative in allowing time off.

Social Support for Donors

Ten donors (69%) felt they had been particularlysupported by one person. Six (35%) others said theyhad been particularly supported by a combination ofpeople and one person felt that he/she had had nosupport from family or friends. In three cases (allwomen), a friend was judged as being particularlysupportive; three men had been particularly supportedby their wives; two women had cited their mother as aparticular source of support, and another two men,their female partners. Encouragement and under-standing were cited as the main qualities of particularsupport. Practical help, such as looking after children

TABLE I. Characteristics of Donors

Characteristic Male (n = 9) Female (n = 8) All (n = 17)

Median age (range) 43 (28–59) 43 (21–46) 43 (21–59)Marital status

Married 5 5 10Single 2 1 3Divorced 1 1 2Cohabiting 1 1 2

Children (%) 7 (78) 6 (75) 13 (76)Previous surgical admission (%) 5 (56) 3 (38) 8 (47)Median sibling age gap [years (range)] 6 (2–11) 4 (1–9) 5 (1–11)

Sibling Donor 2Views on Blood Stem Cell Donation 3

and accompanying the donor to the unit, was anothertype of particular support thought useful.

Six (35%) donors said that someone had not beensupportive. In two cases, this was a husband, anothertwo cases a father, and for the other two, friends orrelatives. In four (66%) of these cases, including oneconcerning a father, the donor thought the reason forlack of support was because the person felt concern orworry for the recipient. Another donor cited a diffi-cult relationship with their father as the reason he/shedid not feel supported. The other donor cited afriend’s fear of hospitals as the reason he/she was notsupportive.

Anxiety Surrounding the Procedure

At pre-procedure interview, the mean STAI scorefor trait anxiety was 35 (SD 7) and the mean statescore was 30 (SD 8). The mean state anxiety score,measured upon arrival at the unit on the first day ofdonation, was 37 (SD 12). Mean scores for femaledonors were higher than for males across all threemeasures of anxiety (trait 39 vs. 33, state at recruit-ment 33 vs. 29, state pre-donation 47 vs. 32).

These scores were consistent with responses toquestions about anxiety asked at the post-donationinterview. Four (24%) people who retrospectivelydescribed themselves as being very anxious when theyhad first arrived at the unit to donate had scored morethan 40 on the STAI state scale. The main sourcesof anxiety were about fear of the unknown concern-ing the procedure and about the pain associated withthe injections of local anaesthetic. Anxiety was gen-erally reduced on the second day of the procedure.Eleven (65%) said they were not anxious on the sec-ond day and no one said they felt very anxious atthis time.

Allowing for small numbers, pressure to donate didnot appear to influence anxiety before procedure. Oneperson who felt under pressure to donate said theyfelt slightly anxious as did four (29%) people who saidthey did not feel under any pressure. The other twodonors who felt under pressure said they were notanxious.

Pain

Using the continuous analogue scale, the meanworst pain score was 41 mm (SD 20). Female donorshad a higher mean pain score (47 mm, SD 18) thanmales (34 mm, SD 20).

Sixteen (94%) reported some pain. Generalisedbone pain following GCSF injections was the mostcommon cause of worst pain, experienced by 7 (41%)people, and 5 (29%) people experienced most pain

during administration of the local anaesthetic forvenepuncture at the time of donation. Two donorshad experienced most pain in their head but said thiswas not a classic headache, and two had found thesub-cutaneous injections of GCSF were most painful.Seven patients took no analgesia to control their pain.Paracetamol was used by 8 (47%) people; however,half felt that their efforts to reduce pain had notworked and that it had to be endured. One person,who admitted to having a low pain threshold and whowas very anxious, took DF118 and was prescribedvalium. This combination was effective in reducingpain and controlling anxiety.

In this small sample, there was no clear-cut asso-ciation between pain and anxiety. Six (75%) peoplewho, at the post-procedure interview, describedthemselves as not anxious at the start of the proce-dure scored 50 mm or less on the pain scale. Theone person who scored 76 mm or more also de-scribed themselves as not anxious (Table II). Con-versely, the four people who said they were veryanxious rated themselves as experiencing mediumamounts of pain and scored 26–75 mm on thepain scale.

Information

All donors valued the quality of the informa-tion they had received and 9 (53%) described it asexcellent. Thirteen (77%) donors had received bothwritten and verbal information, although the writteninformation was designed for autologous donors. Theremaining four donors said they had received verbalinformation only.

All donors reported that they had received thisinformation at the initial interview to discuss dona-tion. In 14 (82%) cases, a consultant was cited asthe source of information, two donors said theyreceived information from a combination of consul-tant and nurse, and one had been well informed bytheir recipient sibling and the consultant. Sixteen(94%) stated they had been given comprehensiveinformation about procedures, risks, and pain.The other, a male who scored 60 mm on the VAS,

TABLE II. Relationship Between Pain and Anxiety

Pain scores (mm)

Anxiety 0–25 26–50 51–75 76–100 Overall

Not anxious 3 3 1 1 8Slightlyanxious

1 2 1 4

Quite anxious 1 1Very anxious 1 3 4

Total 5 6 5 1 17

4 Williams et al.

felt that information had concentrated on possiblepain. All donors had found seeing the machine veryhelpful.

Eleven (65%) donors said they had all the infor-mation they wanted. Two, both of whom scoredhigher than 50 mm on the VAS, would have likedmore information about pain. Two would have likedmore information about the benefits of stem cell do-nation. One would have liked more informationabout the effectiveness of the different procedures forthe recipient and the other would have liked moreinformation on the long-term effects of stem celldonation.

Six (35%) people were happy with just verbal in-formation but specific written information for allo-geneic donors was judged to be important by theother 11 (65%). Two people said that written infor-mation needed to be comprehensive and the long-term effects of growth factor injections should beaddressed. They would have liked more detailed in-formation about what is involved in donation of bothstem cells and bone marrow. Information on self-carewas perceived as important, especially how donorscould prepare themselves, e.g., diet, rest, and so onand how they should look after themselves followingthe procedure. The main advantage of written infor-mation was that it could be taken away and studied athome but it was viewed as an adjunct, not a re-placement, to verbal information.

There was no obvious relationship between anxietyand satisfaction with information given (Table III).Of the 8 people who, at the post-procedure interview,described themselves as not feeling anxious before theprocedure, 4 (50%) felt they needed more informationand 4 (50%) thought they had all the information theyneeded. Of the 4 who described themselves as veryanxious, 3 (75%) felt that they had all the informationthey required.

Time for Consideration

All donors thought that they had been given en-ough time to consider whether or not to donate, andthis varied from two weeks to several months. Gen-erally, the donors indicated that they had made in-

stantaneous decisions to help and once their mindswere made up, they wished to proceed as quickly aspossible in order to help their siblings.

Repeating the Experience

All said they would donate again for a familymember and 12 (71%) said they would also donate fora stranger if the opportunity arose. Generally, thedonors reflected on earlier opinions that life is im-portant and if you could help someone then youshould.

Comments

Ten (59%) people spontaneously stated that theywere well satisfied by the standard of their care. Oneof these donors, upon reflection, had found it difficultto remain in one place for 3 hours at a time andwished he/she had chosen to donate bone marrow.Only one donor expressed fear that the donationmight not work and that their sibling might die. Sevenpeople had no further comments.

DISCUSSION

Over the past 5 years, the use of allogeneic siblingdonor peripheral blood stem cells has grown expo-nentially [1–3]. No published literature exists onthe donors’ perception of this form of donation.Although this prospective baseline studywas limitedbysmall numbers, it does represent the psychosocialcontext of PBPC donation for a complete sampleof consecutive sibling donors over a 13-month period.

The overall attitude to the procedure was favour-able. The fact that most donors experienced somebone pain yet did not take analgesia nor requestfurther analgesia may reflect their belief that somepain was required for stem cell generation. Moreover,the pain was not severe enough to stop any of themobilisations. Anxiety levels were comparable withthe North American norms for men and women aged19–69 years [13] and also similar to the data collectedby Auquier [12] on PBPC collection from patients. Itis conceivable that the low anxiety levels found in theFrench patients may be due to the considerable stresspreviously caused by their diagnosis and therapies,making PBPC a relatively minor procedure in termsof anxiety [12].

Although verbal information given at the timeof the initial interview was universally valued, ourstudy found that the written information was in-adequate for donor needs. It was originally pro-duced for patients and did not cover such issues as

TABLE III. Relationship Between Anxiety and Satisfaction

With Information Giving

Need for more information

Anxiety Yes No Overall

Not anxious 4 4 8Slightly anxious 4 4Quite anxious 1 1Very anxious 1 3 4

Total 5 12 17

Sibling Donor 2Views on Blood Stem Cell Donation 5

descriptions of both methods of donation orGCSF administration and its potential long-term ef-fects on healthy donors. The long-term effects on thedonor if their sibling dies in spite of their PBPC do-nation could be devastating and donors need to beprepared for the possible poor outcome for therecipient.

Finally, this study highlighted one area of graveconcern. The method of identification and selection ofsibling donors did not always protect the donors’interests. Most of the donors in this study were askedto donate by either the recipient or another familymember. In effect, this gave the donor little oppor-tunity to refuse. In this small study, we were unable todemonstrate that this was an issue of importance todonors. Furthermore, our study indicated that a do-nor would be unlikely to refuse to donate for a siblingand, in fact, donors were prepared to donate evenwhen relationships were not cordial. The theme offamily bonding and responsibility was recurrent andstrong.

CONCLUSIONS

From the sibling donor perspective, PBPC collec-tion by apheresis is an acceptable procedure. However,two important areas need to be addressed. Firstly, themanagement of sibling donors in relation to the lack ofconfidentiality was contrary to voluntary donor par-ticipation in blood donation or in unrelated bonemarrow donor registries. In terms of medical ethics,this state of affairs is disturbing. The only realistic wayof dealing with the problem is for donors to be seenand counselled by clinicians independent of thosetreating the recipients. The donor should be the firstperson to be told that they are a match and their de-cision whether or not to donate should then remainconfidential with their clinician. If their decision is notto donate, then the clinician should deal with the sit-uation so as to avoid guilt and alleviate obligation.

Secondly, written information should be providedspecifically for sibling donors and we recommend thatrealistic measures of success for each individual sib-ling pair be given at the initial interview.

Follow-up studies are ongoing to assess the infor-mation needs and support required by sibling donorsirrespective of the outcome for the recipient.

REFERENCES

1. Gratwohl A, Hermans J, Baldomero H. Blood and marrowtransplantation activity in Europe. Bone Marrow Transplant1997;19:407–419.

2. Holyoake TS, Franklin IM. Bone marrow transplants fromperipheral blood: set to transform medical oncology. BMJ1994;309:4–5.

3. Lane TA. Allogeneic marrow reconstitution using peripheralblood stem cells: the dawn of a new era. Transfusion 1996;36:585–589.

4. Gray TF, Shea TC. Current status of peripheral bloodprogenitor cell transplantation. Semin Oncol 1994;21:93–101.

5. Bensinger WI, Weaver CM, Appelbaum FR, Rowley S,Demiver T, Sanders J, Storb R, Buckner CD. Transplantationof allogeneic peripheral blood stem cells mobilized by re-combinant human granulocyte colony-stimulating factor.Blood 1995;85:1655–1658.

6. Miflin G, Russell NH, Hutchison RM, Morgan G, Potter M,Paglinca A, Marsh J, Bell A, Mulligan D, Lumley M, Cook G,Franklin IM. Allogenic PBPC for haematological malignancy:an analysis of Kinetics and GvHD risk. Bone MarrowTransplant 1997;19:9–13.

7. Dreger P, Haferlach T, Eckstpin V, Jacobs S, Suttorp M,Loffler H, Muller-Rucholtz W, Schmitz N. G-CSF mobilisedperipheral blood progenitor cells for allogeneic transplanta-tion: safety kinetics of mobilisation and composition of thegraft. Br J Hematol 1994;87:609–613.

8. Russell JA, Luider J, Weaver M, Brown C, Selinger S, RailtonC, Karlsson L, Klassen J. Collection of progenitor cells forallogenic transplantation from peripheral blood of normaldonors. Bone Marrow Transplant 1995;15:111–115.

9. Miflin G, Charley C, Stainer C, Anderson S, Hunter A,Russell N. Stem cell mobilisation in normal donors for allo-geneic transplantation: analysis of safety and factors affectingefficacy. Br J Haem 1996;95:345–348.

10. Anderlini P, Przepiorka D, Champlin R, Korbling M. Biologicand clinical effects of granulocyte colony stimulating factor innormal individuals. Blood 1996;88:2819–2823.

11. Stroncek ME, Clay J, Smith S,7 Ilstrup F, Oldham J, McCul-lough J. Changes in blood counts after the administration ofgranulocyte-colony-stimulating factor and the collection ofperipheral blood stem cells from healthy donors. Transfusion1996;36:596–600.

12. Auquier P, Macquart-Moulin G, Moatti JP, Blanche JL,Novakovitch G, Blaise D, Faucher C, Viens P, Maraninchi D.Comparison of anxiety, pain and discomfort in two proce-dures of haematopoietic stem cell collection, leukacytapheresisand bone marrow harvest. Bone Marrow Transplant 1995;16:541–547.

13. Spielberger CD. Manual for the State-Trait Anxiety InventorySTAI (Form Y). Palo Alto: Consulting Psychological Press,Inc. 1983.

14. Scott J, Huskisson EC. Graphic representation of pain. Pain1976;2:175–184.

15. Huskisson E. Measurement of pain. Lancet 1974;2:1127–1131.

6 Williams et al.

Appendix A. Allogeneic Donor Interview

Check list of topics to be coveredYes No

• Confirm donor is willing to donate u u

• Ensure entirely voluntary u u

• Explain two methods of donation and mention:Bone Marrow DonationNeed for a general anaesthetic–previous GA history u u

Hospital in-patient stay for two nights u u

Multiple puncture sites over pelvis u u

Post-operative pain/discomfort u u

Need autologous unit u u

If female must take contraceptive precautions for the month before bone marrow harvest u u

Blood Stem Cell DonationNeed for G-CSF injections u u

Naturally occurring substance but much higher doses than normal u u

No information available on potential long term side effects for donors u u

Bone pain and flu like symptoms may develop as a result of injections u u

If female must take contraceptive precautions 1 month prior to and for three monthsafter G-CSF

u u

Two or possibly three donations by apheresis u u

Explain process of cells separation u u

Each donation takes approximately 3 hours u u

Bilateral cannulae (explain) u u

Need good veins u u

May still need to donate bone marrow if insufficient stem cells produced from collection u u

Recovery of sibling’s white cells and platelets may be faster after receiving stem cellsrather than bone marrow leading to less time in hospital and less time at risk ofinfection but higher GVHD.

u u

• Take blood samples–consent for HIV u u

• Give general health check examination, CXR, ECG u u

• Contact donor results to inform if OK or not u u

• Explain that outcome may be bad despite their best endeavours u u

Sibling Donor 2Views on Blood Stem Cell Donation 7

Appendix B. Bone Marrow/Stem Cell Donation

Semi-structured interview schedule

Name:

Hospital Number:

Date of Interview:

Thank you for agreeing to talk to me about donating bone marrow/stem cells.How do you feel now? Is there anything I can do for you?We are keen to help people donating bone marrow or blood stem cells all we can and the information you give will bevery helpful. Please feel free to say exactly what you think. I am not a member of staff and anything you say iscompletely confidential.

1 First of all, could I ask you some preliminary details–like your:DOB?Marital Status?Have you any children?If so, what ages?

2 Is this the first time you have attended hospital? Y/N3 Would you mind telling me what you have been in for before?

. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

4 In what way were your previous attendance similar or different to your experiences in the last few days, do you think?. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

5 Who are you donating marrow or blood cells for?. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

6 What made you decide to donate cells?(Prompt if necessary. Asked personally by patient or other relative etc). . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

7 How would you describe your relationship with your brother/sister/relative?Very close/close/not particularly close/not close at all

8 Why do you say this, do you think?. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

9 Were you close as children?. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

10 How big an age gap is there?. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

11 What best describes how you felt?(Give cards and ask to choose one that best reflects feelings)• I did not hesitate and was delighted to help.• I felt I had no choice and was pleased to help.• I really did not want to do it but felt I could not refuse.• I felt under obligation by my family to help.

12 Would you say you felt pressurised in any way? Y/N13 Who would you say pressurised you? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

14 What about your family and friends-who have been particularly supportive to you?. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

15 In what way, would you say?. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

16 What would you say influences how people respond to a request to donate marrow or blood cells?. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

17 How did you feel when you arrived here yesterday?. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

18 What about when you arrived today?. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

19 What would you say you were worried or anxious about, do you think?Yesterday: . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .Today: . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

20 What about pain? Using this measure, could you indicate by drawing a line across the horizontal line, the worst pain youexperienced during the whole experience of donating marrow or blood cells.

| |

The worst pain you could imagine No pain at all

8 Williams et al.

21 When was this worst pain?. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

22 What else did you find painful?. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

23 Is there anything that helped these pains or could have helped, do you think?. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

24 How do you feel about the information you received when you first visited the Unit?. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

25 How were you given this information?VerballyLeafletOther . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

26 When was this given? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

27 Who gave you information? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .28 What were you told about donating stem cells?

(Prompt–purpose, preliminary preparation, machine, pain etc). . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

29 What else do you think people should know about?. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

30 Thinking now about time, do you think people need more time after their first visit to the hospital, to thinkabout being a donor in the first place?. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

31 Thinking of your own experiences, who do you say this?. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

32 What would you say to other donors?. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

33 If necessary, would you donate bone marrow blood cells again?Y/N

34 If not, would you mind telling me why?

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Thank you for your time. How do you feel now? Is there anything you would like to add?

Sibling Donor 2Views on Blood Stem Cell Donation 9