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Secondary Outcome(s)
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Phase I
BMT Nurse demographics (age, length of professional experience as nurses in Haematology/BMT Units and as BMT Coordinators) will be assessed by a questionnaire designed specifically for this study.[BMT Coordinator demographics will be assessed through one interview at a single timepoint.]
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Phase I
Donors will rate their opinion of the recipient's health using the Karnofsky Performance Status (KPS) scale.[(1) 2 weeks pre-stem cell collection;
(2) on the day of stem cell collection;
(3) 30 days post-stem cell collection]
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Phase I
Relationship closeness with the recipient will be assessed using the Autonomy and Relatedness Inventory (ARI) scale[(1) 2 weeks pre-stem cell collection;
(2) 30 days post-stem cell collection]
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Phase 1
Qualitative questionnaire 2 - Adult related stem cell transplant donors of planned allogeneic transplant recipients. These qualitative questions explore the deeper aspects of related donation and any suggestions for improvement pre-donation and on the day of donation. 1. Sources of emotional support and use of emotional support services of the hospital? 2. Adequacy of emotional support from the hospital: *Not at all adequate *Moderately adequate *Adequate *Very adequate 3. How do you think the hospital can improve donor emotional support? [On the day of stem cell collection]
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Phase I
BMT Nurse' perceptions of the related donation process will be assessed by a questionnaire designed specifically for this study. Open-ended questions invited BMT Nurses to give their opinion about the related donation process in terms of their own role, the challenges encountered in their professional experience, related donors' concerns and suggestions to improve the organisation of related donation. [Phase I
BMT Nurses' perceptions of the related donation process will be assessed through one interview at a single timepoint. ]
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Phase 1
Adult related stem cell transplant donor demographics assessed by a questionnaire designed specifically for this study. Participants are asked for their age, gender, country of birth, marital status, relationship to the recipient, and education. [2 weeks pre-stem cell collection]
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Phase I
Organisation of related donor care in BMT Units will assessed by a questionnaire designed specifically for this study. Questions on donation procedures requested a description of each BMT unit’s organisation, including (1) information provided to potential donors (support materials and professionals involved); (2) HLA tests procedures; (3) the consent process; (4) the availability of financial support; and (5) donor follow- up. [Phase I
Organisation of related donor care in BMT Units will be assessed through one interview with BMT Nurse participants at a single timepoint ]
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Phase I
Self esteem will be measured using the Better Person scale developed by Simmons et al., 1977[(1) 2 weeks pre-stem cell collection;
(2) on the day of stem cell collection;
(3) 30 days post-stem cell collection]
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Phase I
Donor-recipient contact will be assessed using a scale designed specifically for the study of (a) daily, (b) weekly, (c) monthly or (d) yearly/less frequent contact[(1) 2 weeks pre-stem cell collection;
(2) 30 days post-stem cell collection]
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Phase II
Acceptability of the resource will be determined by participant evaluation of the acceptability, perceived usefulness and benefits of the resource. The items included in the questionnaires for completion by donors and Nurses will assess participant perceptions of the content, structure, design, timing and delivery of the resource. [Participant evaluation of the resource will be assess through completion and return of a postal questionnaire. A study pack including an information sheet, resource, questionnaire and reply paid envelope for returning the questionnaire will be mailed to potential participants.]
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Phase 1
Qualitative questionnaire 3 - Adult related stem cell transplant donors of planned allogeneic transplant recipients. These qualitative questions explore the deeper aspects of related donation and any suggestions for improvement post-donation. 1. Looking back, what are your thoughts and feelings about being a donor after donation? 2. Has donating changed your relationship with your recipient or other family members? 3. What was the most challenging aspect of donation? [30 days post-stem cell collection]
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Phase I
Ambivalence about donation will be measured using the Ambivalence about Donation scale developed by Simmons et al., 1977.[2 weeks pre-stem cell collection
]
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Phase I
Guilt and responsibility will be assessed using the Guilt and Responsibility scale developed by Butterworth et al., 1993. The individual items are examined separately in the analyses.[(1) 2 weeks pre-stem cell collection;
(2) on the day of stem cell collection;
(3) 30 days post-stem cell collection]
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Phase I
Qualitative questionnaire 1 - Adult related stem cell transplant donors of planned allogeneic transplant recipients. In addition to validated measures, a number of qualitative questions were designed specifically for the study to provide a full assessment of the deeper aspects of related donation and suggestions for improvement pre-donation: 1. Decision to donate/ Did you at all hesitate in deciding to donate? 2. What was your motivation to donate? I.e. why are you donating? 3. Did you at all feel pressured to donate? 4. What are your thoughts and feelings about being a donor? 5. How prepared do you feel for the donation experience? 6. What were some of the sources of information that you accessed prior to donation? Use a checklist of available sources: *Haematologist *Internet, incl. videos *BMT coordinator *Books *Friends/family *General practitioner 7. What was the most helpful source of information about donation? 8. How do you think the hospital can improve donor preparation? [2 weeks pre-stem cell collection]
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Phase I
Donation experience will be assessed using the Donation Experience scale developed by Butterworth et al., 1993. An overall score is not derived, but individual items are reviewed to understand the donation experience.[(1) on the day of stem cell collection;
(2) 30 days post-stem cell collection]
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