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Being a haematopoietic stem cell donor for a sick sibling: Adult donors' experiences prior to donation
European Journal of Oncology Nursing 19 (2015) 529e535
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European Journal of Oncology Nursing journal homepage: www.elsevier.com/locate/ejon
Being a haematopoietic stem cell donor for a sick sibling: Adult donors' experiences prior to donation € b, Stig Lenhoff a, Mariette Bengtsson b Annika Kisch a, b, *, Ingrid Bolmsjo a b
Department of Haematology, Skåne University Hospital, S-221 85 Lund, Sweden € University, S-205 06 Malmo €, Sweden Faculty of Health and Society, Malmo
a b s t r a c t Keywords: Sibling stem cell donor Allogeneic stem cell transplantation Donors' experiences Qualitative content analysis
Background: There is a lack of knowledge about sibling stem cell donors' experiences pre-donation and the waiting period before the donation might have been long. The donors and their corresponding sibling recipients were simultaneously included in two different interview studies. The results from the recipient study have been presented in a separate paper. Purpose: The aim was to explore the experiences of being a stem cell donor for a sibling, prior to donation. Method: Ten adult sibling donors were interviewed prior to stem cell donation. The interviews were digitally recorded, transcribed verbatim and subjected to qualitative content analysis. Results: The main theme Being a cog in a big wheel describes the complex process of being a sibling donor prior to donation, covering a mixture of emotions and thoughts. The four subthemes Being available, Being anxious, Being concerned and Being obliged cover the various experiences. The sibling donors' experiences are influenced by the quality of the relationship with the sick sibling. Conclusions: Sibling stem cell donors go through a complex process once they have accidentally got involved in. They have been asked to become a donor; it was not a voluntary choice. In caring for sibling stem cell donors the nurses should be aware of the complexity of the process they experience and take into consideration their personal situation and needs. Providing optimal care for both sibling donors and their corresponding recipients is a challenge, and further improvement and exploration are needed. © 2015 Elsevier Ltd. All rights reserved.
Introduction Allogeneic haematopoietic stem cell transplantation (HSCT) is used as a treatment for patients with a variety of diseases, mainly haematological malignancies. It offers a potential cure; however, there is a significant risk of complications and side effects, including mortality (Copelan, 2006; Ljungman et al., 2010; Pidala et al., 2009). Approximately one third of all HSCTs are performed with stem cells from HLA-matched sibling donors, two thirds with cells from unrelated registry donors or, to a small extent, from relatives other than HLA-matched siblings. Usually the search for a donor begins among the patient's siblings, where there is a 25 percent chance that each sibling will be HLA-matched. Stem cell
* Corresponding author. Tel.: þ46 46 176133, þ46 46 172318, þ46 708 211373; fax: þ46 46 176021. E-mail addresses: [email protected] (A. Kisch), [email protected] € ), [email protected] (S. Lenhoff), [email protected] (I. Bolmsjo (M. Bengtsson). http://dx.doi.org/10.1016/j.ejon.2015.02.014 1462-3889/© 2015 Elsevier Ltd. All rights reserved.
collection is performed either by means of bone marrow harvest or, more commonly, by peripheral blood stem cell collection. The most frequent symptoms experienced by haematopoietic stem cell donors post donation are transient muscle pain, fatigue and bone pain (Fortanier et al., 2002; Kennedy et al., 2003; Switzer et al., 2001). Major side effects are rare but there is a small risk of fatalities and serious adverse events, e.g. deep vein thrombosis, splenic rupture and cardiac arrest (Halter et al., 2009). During recent years attention has been given to the situation of the sibling stem cell donors. Recommendations for information and care for sibling stem cell donors have been published since 2010 (Clare et al., 2010; O'Donnell et al., 2010; van Walraven et al., 2010), pointing out the importance of separating all aspects of the care for donors and their recipients, but there is an absence of standardized guidelines (Billen et al., 2014). An information and care model (the IC model) for potential adult sibling donors was developed and introduced in a Swedish university hospital in 2005 (Kisch et al., 2008), which corresponds well with the recommendations referred to above. Evaluation suggested that the IC model
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works well but needs improving to further prevent complicating influence on the donors' decision (Kisch et al., 2013). The adequacy of the preparation for donation has been shown to influence the experience of distress, and anxiety that has been reported in relation to not receiving sufficient information (Munzenberger et al., 1999; Pillay et al., 2012; Wiener et al., 2008; Williams et al., 2003). For sibling donors there may be a considerable time lapse between being asked to become a donor and making the donation. Fig. 1 shows a schematic flowchart of the donation process for sibling donors. During this waiting thoughts and emotions, including uncertainty about whether the donation will actually be performed and its consequences, may arise. Studies on the psychosocial consequences and experiences of adult sibling donors are limited, however, those that have been performed show that these donors are in a vulnerable situation. Negative experiences, such as anxiety, pain and guilt as well as positive experiences, such as happiness about being a match, an increased sense of self-worth and of pride and a closer relationship with the sick sibling have been described. Siblings are often concerned about the outcome of the transplantation for the sick sibling with the responsibility for doing what is needed to be done to help a family member (Christopher, 2000; de Oliveira-Cardoso et al., 2010; Munzenberger et al., 1999; Pillay et al., 2012; Wiener et al., 2008; Williams et al., 2003). However, there is a lack of knowledge about sibling stem cell donors' experiences of being asked to become a donor and other experiences before donation. To our knowledge only one qualitative study exploring adult sibling stem cell donors' experiences predonation has been carried out (de Oliveira-Cardoso et al., 2010), but this was performed in bone marrow donors only. The majority of qualitative studies about sibling donors' experiences pre-donation have been performed after the donation process, entailing uncertainty about what the donors remember about their pre-donation experiences (Wiener et al., 2008). Considering the lack of knowledge about sibling stem cell donors' experiences pre-donation and the fact that they might have had a long waiting period, it is of value to gain knowledge about their experiences while they are close to the donation to facilitate the provision of adequate information and care. Therefore, the aim of this study was to explore the experiences of being a stem cell donor for a sibling, prior to donation.
can provide rich narrative data and insight into donor experiences and perspectives (Garcia et al., 2013). Participants Sibling donors and their corresponding sibling recipients were simultaneously included in two different interview studies. The results from the recipient study have been presented in a separate paper (Kisch et al., 2014). The inclusion criteria for the donor study were: age for both donor and recipient at least 18 years and ability to speak and understand Swedish. From March 2011 to December 2012 ten consecutive intended sibling donors at a university hospital in Sweden who met the inclusion criteria were asked to participate in the study and all ten agreed to do so. Data collection Data were collected using face-to-face interviews prior to the stem cell donation. The interviews took place between 1 and 18 days prior to donation (median 4.5 days prior to donation). The interviews were conducted at places chosen by the participants; seven in a secluded room in the hospital, one in the home of the donor, one in the home of the sick sibling and one at the donor's working place. All the interviews were conducted by the first author (AK) who has significant professional experience with this donor group, but was not involved in the care of the participants in this study. The interviews were digitally recorded and lasted between 33 and 131 min (median 57.5 min). A semi-structured interview guide was developed based on clinical experiences, relevant research and principles for developing an interview guide (Patton, 2002). Open-ended questions were used and all interviews started with an open question: Can you tell me about your feelings and thoughts when you got to know that your sibling needed a stem cell donor for transplantation and you were asked if you were willing to be tested to become that donor? The interviews continued with further questions in order to lead the informants to expand their answers and to clarify their thoughts and experiences about being a stem cell donor for a sibling.
Method
Data analysis
Design
The interviews were transcribed verbatim. The transcribed text was subjected to content analysis, inspired by the description of Graneheim and Lundman (2004). Content analysis was used not only to understand the manifest data but also to interpret the latent
A qualitative approach with interviews was chosen for this study, since qualitative research on sibling donors is valuable and
Fig. 1. Flowchart illustrating the donation process for sibling donors. The time schedule is approximate and the flowchart is schematic.
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content. The first author (AK) simultaneously listened to and read all the interviews to check the accuracy of the transcript, become familiar with the text and gain a sense of the whole. Thereafter, each individual interview was divided into meaning units (sentences or paragraphs) and labelled with a code, in accordance with the purpose of the study, i.e. to explore the experiences of being a stem cell donor for a sibling prior to donation. All interview codes were compared and subcategories were identified based on differences and similarities. The subcategories were finally grouped into eleven categories. The ultimate step in the analysis of the interviews was to interpret the underlying meaning of all codes, subcategories and categories, which resulted in the formulation of one main theme and four subthemes. The first author (AK) made the analysis but, in order to increase trustworthiness (Lincoln and Guba, 1985; Polit and Beck, 2012) discussions between the first, second (IB) and fourth (MB) authors were held regularly throughout the entire process. The second (IB) and the fourth (MB) authors have significant experience in carrying out qualitative research, and interpreting interviews. Identified codes, subcategories, categories, subthemes and overall theme from all ten interviews were discussed among the three authors. Alternative ways of interpreting, categorizing and organizing data were continuously and carefully discussed. The discussions resulted in final agreement regarding the results of the analysis. Ethical considerations This study was approved by the Regional Ethical Review Board for Southern Sweden (Dnr 2009/655). Written and oral information about the study was provided by the first author during the informants' visits to the hospital 2e3 weeks prior to donation. In accordance with the Declaration of Helsinki (World Medical Association, 2013), the participants were informed that participation was voluntary and that they could withdraw at any time without there being any negative consequences concerning treatment and care. The participants were assured that their confidentiality would be respected throughout the research process. The first author telephoned the participants some days after the visit to ask for verbal informed consent and a time and place for the interview was set. Written informed consent was obtained from the participants just prior to the interview. Results Participant characteristics Five men and five women participated in the study. The median age of the sibling donors at the time of the interviews was 54 years (range 26e66 years). The median age of the corresponding recipients was 61.5 years (range 19e68 years). The gender constellation was: male donor to male patient (n ¼ 3), male donor to female patient (n ¼ 2), female donor to male patient (n ¼ 1), female donor to female patient (n ¼ 4). Nine of the donors eventually underwent peripheral blood stem cell collection and one underwent bone marrow harvest. Diagnoses and other characteristics of the corresponding sick siblings are included in the paper that reports the recipients' study (Kisch et al., 2014). Being a cog in a big wheel The main theme Being a cog in a big wheel emerged from the analysis and was supported by four subthemes Being available, Being anxious, Being concerned and Being obliged with two or three categories under each of the subtheme, giving a total of eleven (Fig. 2). Being a sibling donor is described by the participants as
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going through a process they have got into accidentally because of their sibling's serious illness, hence, they have not volunteered to a donor registry but have just happened to become donors. In the time prior to donation they experienced a mixture of positive and negative emotions and thoughts. Expressions of happiness about donating and the possibility of making a difference appear together with descriptions of being anxious, concerned and obliged. The sibling donors have a dual role; apart from being a relative they are also a source of stem cells, vital for increasing their sibling's chances of survival. Some donors experience being considered a hero by relatives and friends, but they consider themselves only one component in the donationetransplantation procedure. Many of the narratives include descriptions of the donationetransplantation as a joint project with a common goal for the two siblings in which the donor plays a crucial part. Having a seriously ill sibling and the quality of their relationship influence the donors' experiences, i.e. whether the relationship is intimate, strained or if there is no contact at all. For some donors the relationship with the sibling did not change after the decision to become the donor, while for others it improved. Thoughts about if and how the relationship is going to change after the donationetransplantation occur among all donors and wishes are expressed about a future improvement in their relationship as a consequence of the donation. All of the donors emphasized and appreciated the confidentiality of the care, i.e. the separate care of the donor and the sibling recipient by different physicians and nurses. However, a majority of the donors expressed the wish that they had been offered the possibility of talking to a psychosocial professional, e.g. a psychologist, because of the difficulties of talking to relatives about their emotions. The donors said that not talking about being a donor is a consequence of minimizing their role compared to the sick sibling and considering themselves as only one part in a bigger project: Being a cog in a big wheel. The categories identified are woven into the text below, printed in italics, with the subthemes used as headings. Quotations are included to illustrate the participants' experiences associated with each category in their own words.
Being available The majority of the narratives are pervaded by a focus on helping the sick sibling and being ready to do something as a sibling. The willingness to help and being available when needed and a wish to make a difference are shown clearly. Feeling happy without hesitation demonstrates happiness and a sense of gratitude at being able to donate and a wish to donate however big or small the patient's chances of recovering. “I believe this is the natural thing to do … This is what you would do for your sibling. No one could influence me in this. It did not need to be supported by a decision.” (D2) Focussing on being able to donate is shown by the donors' descriptions of focussing on staying healthy in order to be able to donate, choosing the procedure for the collection of stem cells that is best for the sick sibling, giving support to that sibling and not thinking about the risks associated with the donation. “I just want her to be alive. That's what I want and then I don't give a damn about anything else.” (D9) Giving a concrete gift encompasses the importance of being useful and that donating stem cells is perceived as a simple effort which might make a big difference. Giving a concrete gift is also shown by the use of expressions about being unique in their ability
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Fig. 2. Illustration of the process experienced by sibling stem cell donors prior to donation including a mixture of emotions and thoughts e Being a cog in a big wheel.
to give life to the sick sibling and about the pleasure they feel in being the person who supplies the ‘spare parts’.
evident risk of dying, but also worries about the sibling's anxiety about the disease and treatment.
“A way of giving, even to have the chance of giving her life, … so it feels as if there is something I can do out of pure love, as sister to sister … I'm the only one in the world, just now, who is going to be the tool for K (patient) getting another chance to be cured and to live … This is so very, very concrete, it's my little stem cells lying there ready to provide the building blocks from my body, and I can: ‘but you can do a bit of building on my cells’ … So it feels like being of some use, without underlying intentions.” (D5)
“It was actually just that what you think about is rather how well will she do … Of course, she will live till the next year.” (D6)
Being anxious All narratives reveal signs of the donors being anxious; either to a large extent about different parts of the donationetransplantation procedure or to a lesser extent. Worrying about not being able to donate and what consequences this will have for the sick sibling are described as happening at two time points; while waiting for the results from the HLA typing and later while waiting for the result of the health investigation to be approved as a donor. “It was that uncertainty which, if you counted in percentages and 37.5 percent was the chance that either I or my brother would be suitable, but that I alone should be the donor and functional was a 25 percent chance. You thought about that, what happens if we aren't suitable?” (D1) Since the donors are also siblings, in most cases they keep in touch and are worrying about the sick sibling. The donor worries about and is aware of the severity of the sibling's disease and their
The donor is going to go through a procedure in order to help, but the procedure is associated with unpleasantness and risks, as is demonstrated in expressions of worrying about the stem cell collection. Thoughts and worries about how the collection will proceed, if it will hurt and what other side effects and inconveniences will occur occupy the participants' minds. “A little anxiety about being connected then. That my blood will circulate in a machine and then back again, that it will work. It's a bit frightening.” (D3)
Being concerned The donors' sense of concern about others is clearly demonstrated in the narratives. The donors are concerned about the sick sibling, but also about what the donation and transplantation will entail for other relatives and a wish to protect and take care of those relatives. Feeling responsible for the sick sibling is revealed by ideas of being responsible for the sibling's life and their common relations, including the responsibility they will feel if the donation should cause the sibling's death. The donor also tries to protect the sick sibling by withholding information about the risks and inconveniences associated with the donation, the donor's worries, and sometimes hesitation, about donating.
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“I think I have to carry a lot of the burden now … I will feel responsible for him in a way that I didn't do before, I think.” (D8) Family members of the donors are worried about the donation procedure which leads to donors protecting their own family from some information about the donation and its risks and from their own worries. This is demonstrated by expressions about keeping emotions and thoughts to themselves. “It's clear that my wife is a bit worried, when she reads about it, but I haven't let her read exactly everything, but I have explained roughly anyway and she thinks it sounds a bit unpleasant.” (D1) Caring about other siblings who do not donate is illustrated by thoughts regarding the influence of the donation on other siblings. Other siblings appear to feel left out of the shared communion between the sibling donor and the sick sibling or, in contrast by feelings of relief at not having to donate. However, the sibling donors do not know how other siblings feel because none of the donors had talked about this issue with their siblings, but all had thought about it and had a sense of being responsible for caring for them. “But then I thought of how my brother reacted. That he wasn't a match, because from the beginning he said, both to J (the other sister) and me: ‘It must be me!’ So it's like you have to think of your siblings a bit and respect them so they don't get unhappy … I thought mostly of him in fact … that I would collect him later in the evening so that we could spend some sibling time together … It felt as if he needed to talk to us a bit.” (D9)
Being obliged To be a sibling donor is associated with feelings of pressure and being obliged to donate. In the majority of the narratives there are descriptions of how the donation procedure caused the donor stress. They feel as if they have no choice, feeling compelled to donate, which often comes from the donors themselves. However, feeling compelled to donate also encompasses a feeling of being taken for granted, based on the actions of the sick sibling, relatives, friends and colleagues. Experiences of being forced and that the donation has taken over the donor's life are revealed. “I think that if you are a sibling then you have no choice … I feel almost forced, ‘violated’, exposing my body to something that I would never normally do … It's very clear to everybody around me that I will do it. And it's quite clear to me, too, that I will do it but that doesn't stop you from thinking about it a bit, it's almost like looking at a film, it's a bit unreal … It's as if it's taken over my life.” (D8) Feeling guilty is demonstrated in the donors' expressions of the fear of feeling a failure if the sick sibling were to die as a consequence of the donation. Feeling guilty is also based on their feelings of finding it hard to go through the donation procedure, and some donors express the wish that they did not have to donate. “It's no joke to know that he is seriously ill. I don't tell anyone that I have doubts … That I might perhaps not have to do it, it would be a relief, but then I am ashamed, have feelings of guilt because I think like that.” (D3)
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with its variety of emotions and thoughts. The experiences sometimes appear one at a time and sometimes several together, depending on the circumstances, as shown in Fig. 2. They may feel uncertainty and loneliness in the waiting period between being asked to become a donor and the donation. The main theme Being a cog in a big wheel is a description of the process the sibling donors experience of being one part in a bigger project, but a very important and crucial part. Sibling donors have been asked to become a donor, they have not volunteered to a donor registry. They have the dual role of being a family member and a donor, which may entail psychological vulnerability in that their role differs from that of the sibling recipient and other family members. This role is also different from that of an unrelated donor, where the donor and the recipient are unknown to each other. The experience of being a donor for a sibling may differ depending on family dynamics, including the kind of relationship the donor has with the sick sibling; positive because of a supportive family network, or negative due to tensions between family members (Christopher, 2000; Labott and Pfammatter, 2014; Pillay et al., 2012; Williams et al., 2003). All the donors in the study said that they just happened to become donors; it was not a voluntary choice. However, all the donors also described themselves being available and ready to help, focussing on the sick sibling while also worrying about themselves and feeling obliged to donate. The feeling of being forced, compelled to donate, come from the donors themselves but also as social pressure from the sick sibling and other relatives. This is consistent with the results of the study by de Oliveira-Cardoso et al. (2010). It is important to highlight the major results of the donors keeping silent concerning their emotions about being a donor. They appear to feel alone in the process and do not want to upset the sick sibling or other relatives with their thoughts and emotions. Their worries for themselves and their simultaneous awareness of the difference in severity of the process between themselves and their sick sibling make them feel guilty. This is one explanation for their minimizing their own role and effort and for their not having talked about their emotions and thoughts, which might cause extra pressure and lead to psychosocial consequences for the sibling donor. It became evident from the results that the quality of the relationship with the sick sibling influences the experiences, as has been shown earlier (Labott and Pfammatter, 2014; Pillay et al., 2012). The results show that if the relationship between the siblings is good the donor often has no or very little doubt about donating. At the same time the donors with a close relationship with the sick sibling seem to have a greater sense of being obliged to donate and a responsibility for the sibling, connected with feelings of anxiety about the consequences of the transplantation. However, all donors were willing to help their sibling irrespective of the relationship. Our study clearly shows that the pressure experienced by the sibling donors also includes a sense of being concerned about others. The donors know intellectually that they make an important effort to help, but at the same time they often feel obliged to be strong and take care of the sick sibling and other relatives. This role might be a heavy burden to carry and the results show that the donors wish to talk to a psychosocial professional. The sibling donors' emotional needs should therefore be assessed in order to provide adequate preparation for the donation, including information and emotional support (Pillay et al., 2012). Implications for clinical practice and research
Discussion The results of this study clearly elucidate the complexity of the process experienced by sibling stem cell donors prior to donation,
To our knowledge this is the first study in a western country where sibling stem cell donors, the majority donating peripheral blood stem cells, were interviewed about their experiences prior to donation. Studies of experiences of adult sibling stem cell donors do
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exist but only to a limited extent (Christopher, 2000; de OliveiraCardoso et al., 2010; Munzenberger et al., 1999; Pillay et al., 2012; Wiener et al., 2008; Williams et al., 2003). This study shows that in providing care for sibling stem cell donors the nurses should be aware of the complexity of the process they go through. One important challenge for nurses, and a way of easing the burden of obligation, responsibility and guilt in sibling donors, is to give adequate individualized educational and psychological support pre-donation, paying attention to the donors' needs and wishes to talk to professionals. The donors' needs for support after the donation should also be investigated and followed up. We want to emphasize the importance of confidentiality in the provision of care, by separating the care and information to the donor and the corresponding recipient, which has been pointed out earlier (Clare et al., 2010; Kisch et al., 2013; O'Donnell et al., 2010; van Walraven et al., 2010). As the donors feel that as a sibling they do not have a choice and are obliged to donate, it is important to ensure that potential sibling donors are always offered the chance to decline HLA typing and donation. The result that some donors experience a change in their relationship with the sick sibling should be seen in relation to sibling recipients' experiences of changed relationship with the donor after the decision to donate (Kisch et al., 2014). We may assume that if the donor experiences a strengthened relationship, the patient has the same kind of experience, and the reverse if the relationship is felt to be weakened. However, the sibling donor and the sibling recipient might have opposite experiences and expectations of changes in the relationship. To investigate whether and how donors' and recipients' relationships change over time and to elucidate their experiences we have two ongoing follow-up interview studies with the donors and the sibling recipients respectively in this study up to one year after donationetransplantation. This is consistent with advice concerning future prospective longitudinal research (Pillay et al., 2012). Strengths and limitations The results of this study have been evaluated in terms of trustworthiness (Lincoln and Guba, 1985; Polit and Beck, 2012). Credibility was strengthened by the differences in the participants' age, gender and kind of relationship with the sick sibling. Credibility was further increased by making the interpretation of the data visible to the reader through incorporating quotations from the participants' narratives into the text. The quotations are translated from Swedish, but to reduce the threat to credibility they have been translated and back-translated. The first author made efforts to increase dependability by attempting, during the interviews, to achieve a mutual understanding of the meaning of the questions and responses and by inviting the participants to deepen their narratives. The first author's pre-understanding from the care of sibling stem cell donors could have influenced the interpretation of the interviews, but the open dialogue with the other authors, who have no experience in this context but are experienced in qualitative research, helped to minimize potential misinterpretation and enhanced the confirmability and trustworthiness of the study. Concerning transferability, the results of this study may be applicable to sibling stem cell donors in other settings. One limitation with this study is that only Swedish-speaking donors were included. Nowadays it is not uncommon for sibling donors come to a foreign country, in this case Sweden, just for health investigation and donation. These donors do not speak the language and do not live in the country where they donate. Investigations of sibling donors speaking other languages and living in other countries than the country for donation are needed to gain knowledge about their experiences, needs and cultural differences. It is a challenge for health-care professionals to optimize the
information and care for this growing group of donors with different languages and cultures. Conclusion To conclude, this study clearly shows that, prior to donation, people who are stem cell donors for a seriously ill sibling go through a complex process they have accidentally got into. They have to deal with a mixture of experiences concerning being available, anxious, concerned and obliged, and their key role as donor can be described as Being a cog in a big wheel. The quality of the relationship with the sick sibling has an impact on their experiences. Knowledge that the donors experience these emotions can help nurses to better understand the donors and provide individualized supportive care in a professional manner. We want to stress that the care of each donor should take into consideration his or her personal situation and needs, including the relationship with the sibling recipient. The results of this study can certainly contribute to the quality of care and support for haematopoietic sibling stem cell donors. Conflict of interest The authors declare they have no conflicts of interest. Acknowledgement We would like to thank the sibling donors who agreed to participate in this study. References Billen, A., Madrigal, J.A., Shaw, B.E., 2014. A review of the haematopoietic stem cell donation experience: is there room for improvement? Bone Marrow Transplantation 49 (6), 729e736. Christopher, K.A., 2000. The experience of donating bone marrow to a relative. Oncology Nursing Forum 27 (4), 693e700. Clare, S., Mank, A., Stone, R., Davies, M., Potting, C., Apperley, J.F., Research Subcommittee of the EBMT Nurses Group, 2010. Management of related donor care: a European survey. Bone Marrow Transplantation 45, 97e101. Copelan, E.A., 2006. Hematopoietic stem-cell transplantation. The New England Journal of Medicine 354 (17), 1813e1826. de Oliveira-Cardoso, E.A., dos Santos, M.A., Mastropietro, A.P., Voltarelli, J.C., 2010. Bone marrow donation from the perspective of sibling donors. Revista LatinoAmericana de Enfermagem 18 (5), 911e918. Fortanier, C., Kuentz, M., Sutton, L., Milpied, N., Michalet, M., Macquart-Moulin, G., et al., 2002. Healthy sibling donor anxiety and pain during bone marrow or peripheral blood stem cell harvesting for allogeneic transplantation: results of a randomised study. Bone Marrow Transplantation 29, 145e149. Garcia, M.C., Chapman, J.R., Shaw, P.J., Gottlieb, D.J., Ralph, A., Craig, J.C., et al., 2013. Motivations, experiences, and perspectives of bone marrow and peripheral blood stem cell donors: thematic synthesis of qualitative studies. Biology of Blood and Marrow Transplantation 19 (7), 1046e1058. Graneheim, U.H., Lundman, B., 2004. Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurse Education Today 24 (2), 105e112. Halter, J., Kodera, Y., Ispizua, A.U., Greinix, H.T., Schmitz, N., Favre, G., et al., 2009. Severe events in donors after allogeneic hematopoietic stem cell donation. Haematologica 94 (1), 94e101. Kennedy, G.A., Morton, J., Western, R., Butler, J., Daly, J., Durrant, S., 2003. Impact of stem cell donation modality on normal donor quality of life: a prospective randomized study. Bone Marrow Transplantation 11, 1033e1035. Kisch, A., Dykes, J., Lindmark, A., Lenhoff, S., 2008. A proposed plan for the management.of adult sibling donors. Bone Marrow Transplantation 42, 357e358. €, I., 2013. Potential adult sibling stem Kisch, A., Lenhoff, S., Bengtsson, M., Bolmsjo cell donors' perceptions and opinions regarding an information and care model. Bone Marrow Transplantation 48 (8), 1133e1137. €, I., Bengtsson, M., 2014. Having a sibling as donor: Kisch, A., Lenhoff, S., Bolmsjo patients' experiences immediately before allogeneic haematopoietic stem cell transplantation. European Journal of Oncology Nursing 18, 436e442. Labott, S., Pfammatter, A., 2014. The influence of the donor-recipient relationship on related donor reactions to stem cell donation. Bone Marrow Transplantation 49 (6), 831e835. Lincoln, Y.S., Guba, E.G., 1985. Naturalistic Inquiry. Sage Publications, Beverly Hills, California.
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Polit, D.F., Beck, C.T., 2012. Nursing Research: Generating and Assessing Evidence for Nursing Practice, ninth ed. Wolters Kluwer Health/Lippincott Williams and Wilkins, Philadelphia. Switzer, G.E., Goycoolea, J.M., Dew, M.A., Graeff, E.C., Hegland, J., 2001. Donating stimulated peripheral blood stem cells vs bone marrow: do donors experience the procedures differently? Bone Marrow Transplantation 27 (9), 917e923. van Walraven, S.M., Nicoloso-de Faveri, G., Axdorph-Nygell, U.A., Douglas, K.W., Jones, D.A., Lee, S.J., , et al.WMDA Ethics and Clinical Working Groups, 2010. Family donor care management: principles and recommendations. Bone Marrow Transplantation 45 (8), 1269e1273. Wiener, L.S., Steffen-Smith, E., Battles, H.B., Wayne, A., Love, C.P., Fry, T., 2008. Sibling stem cell donor experiences at a single institution. Psychooncology 17 (3), 304e307. Williams, S., Green, R., Morrison, A., Watson, D., Buchanan, S., 2003. The psychosocial aspects of donating blood stem cells: the sibling donor perspective. Journal of Clinical Apheresis 18 (1), 1e9. World Medical Association, 2013. World Medical Association declaration of Helsinki: ethical principles for medical research involving human subjects. JAMA e The Journal of the American Medical Association 310 (20), 2191e2194.
Contents lists available at ScienceDirect
European Journal of Oncology Nursing journal homepage: www.elsevier.com/locate/ejon
Being a haematopoietic stem cell donor for a sick sibling: Adult donors' experiences prior to donation € b, Stig Lenhoff a, Mariette Bengtsson b Annika Kisch a, b, *, Ingrid Bolmsjo a b
Department of Haematology, Skåne University Hospital, S-221 85 Lund, Sweden € University, S-205 06 Malmo €, Sweden Faculty of Health and Society, Malmo
a b s t r a c t Keywords: Sibling stem cell donor Allogeneic stem cell transplantation Donors' experiences Qualitative content analysis
Background: There is a lack of knowledge about sibling stem cell donors' experiences pre-donation and the waiting period before the donation might have been long. The donors and their corresponding sibling recipients were simultaneously included in two different interview studies. The results from the recipient study have been presented in a separate paper. Purpose: The aim was to explore the experiences of being a stem cell donor for a sibling, prior to donation. Method: Ten adult sibling donors were interviewed prior to stem cell donation. The interviews were digitally recorded, transcribed verbatim and subjected to qualitative content analysis. Results: The main theme Being a cog in a big wheel describes the complex process of being a sibling donor prior to donation, covering a mixture of emotions and thoughts. The four subthemes Being available, Being anxious, Being concerned and Being obliged cover the various experiences. The sibling donors' experiences are influenced by the quality of the relationship with the sick sibling. Conclusions: Sibling stem cell donors go through a complex process once they have accidentally got involved in. They have been asked to become a donor; it was not a voluntary choice. In caring for sibling stem cell donors the nurses should be aware of the complexity of the process they experience and take into consideration their personal situation and needs. Providing optimal care for both sibling donors and their corresponding recipients is a challenge, and further improvement and exploration are needed. © 2015 Elsevier Ltd. All rights reserved.
Introduction Allogeneic haematopoietic stem cell transplantation (HSCT) is used as a treatment for patients with a variety of diseases, mainly haematological malignancies. It offers a potential cure; however, there is a significant risk of complications and side effects, including mortality (Copelan, 2006; Ljungman et al., 2010; Pidala et al., 2009). Approximately one third of all HSCTs are performed with stem cells from HLA-matched sibling donors, two thirds with cells from unrelated registry donors or, to a small extent, from relatives other than HLA-matched siblings. Usually the search for a donor begins among the patient's siblings, where there is a 25 percent chance that each sibling will be HLA-matched. Stem cell
* Corresponding author. Tel.: þ46 46 176133, þ46 46 172318, þ46 708 211373; fax: þ46 46 176021. E-mail addresses: [email protected] (A. Kisch), [email protected] € ), [email protected] (S. Lenhoff), [email protected] (I. Bolmsjo (M. Bengtsson). http://dx.doi.org/10.1016/j.ejon.2015.02.014 1462-3889/© 2015 Elsevier Ltd. All rights reserved.
collection is performed either by means of bone marrow harvest or, more commonly, by peripheral blood stem cell collection. The most frequent symptoms experienced by haematopoietic stem cell donors post donation are transient muscle pain, fatigue and bone pain (Fortanier et al., 2002; Kennedy et al., 2003; Switzer et al., 2001). Major side effects are rare but there is a small risk of fatalities and serious adverse events, e.g. deep vein thrombosis, splenic rupture and cardiac arrest (Halter et al., 2009). During recent years attention has been given to the situation of the sibling stem cell donors. Recommendations for information and care for sibling stem cell donors have been published since 2010 (Clare et al., 2010; O'Donnell et al., 2010; van Walraven et al., 2010), pointing out the importance of separating all aspects of the care for donors and their recipients, but there is an absence of standardized guidelines (Billen et al., 2014). An information and care model (the IC model) for potential adult sibling donors was developed and introduced in a Swedish university hospital in 2005 (Kisch et al., 2008), which corresponds well with the recommendations referred to above. Evaluation suggested that the IC model
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works well but needs improving to further prevent complicating influence on the donors' decision (Kisch et al., 2013). The adequacy of the preparation for donation has been shown to influence the experience of distress, and anxiety that has been reported in relation to not receiving sufficient information (Munzenberger et al., 1999; Pillay et al., 2012; Wiener et al., 2008; Williams et al., 2003). For sibling donors there may be a considerable time lapse between being asked to become a donor and making the donation. Fig. 1 shows a schematic flowchart of the donation process for sibling donors. During this waiting thoughts and emotions, including uncertainty about whether the donation will actually be performed and its consequences, may arise. Studies on the psychosocial consequences and experiences of adult sibling donors are limited, however, those that have been performed show that these donors are in a vulnerable situation. Negative experiences, such as anxiety, pain and guilt as well as positive experiences, such as happiness about being a match, an increased sense of self-worth and of pride and a closer relationship with the sick sibling have been described. Siblings are often concerned about the outcome of the transplantation for the sick sibling with the responsibility for doing what is needed to be done to help a family member (Christopher, 2000; de Oliveira-Cardoso et al., 2010; Munzenberger et al., 1999; Pillay et al., 2012; Wiener et al., 2008; Williams et al., 2003). However, there is a lack of knowledge about sibling stem cell donors' experiences of being asked to become a donor and other experiences before donation. To our knowledge only one qualitative study exploring adult sibling stem cell donors' experiences predonation has been carried out (de Oliveira-Cardoso et al., 2010), but this was performed in bone marrow donors only. The majority of qualitative studies about sibling donors' experiences pre-donation have been performed after the donation process, entailing uncertainty about what the donors remember about their pre-donation experiences (Wiener et al., 2008). Considering the lack of knowledge about sibling stem cell donors' experiences pre-donation and the fact that they might have had a long waiting period, it is of value to gain knowledge about their experiences while they are close to the donation to facilitate the provision of adequate information and care. Therefore, the aim of this study was to explore the experiences of being a stem cell donor for a sibling, prior to donation.
can provide rich narrative data and insight into donor experiences and perspectives (Garcia et al., 2013). Participants Sibling donors and their corresponding sibling recipients were simultaneously included in two different interview studies. The results from the recipient study have been presented in a separate paper (Kisch et al., 2014). The inclusion criteria for the donor study were: age for both donor and recipient at least 18 years and ability to speak and understand Swedish. From March 2011 to December 2012 ten consecutive intended sibling donors at a university hospital in Sweden who met the inclusion criteria were asked to participate in the study and all ten agreed to do so. Data collection Data were collected using face-to-face interviews prior to the stem cell donation. The interviews took place between 1 and 18 days prior to donation (median 4.5 days prior to donation). The interviews were conducted at places chosen by the participants; seven in a secluded room in the hospital, one in the home of the donor, one in the home of the sick sibling and one at the donor's working place. All the interviews were conducted by the first author (AK) who has significant professional experience with this donor group, but was not involved in the care of the participants in this study. The interviews were digitally recorded and lasted between 33 and 131 min (median 57.5 min). A semi-structured interview guide was developed based on clinical experiences, relevant research and principles for developing an interview guide (Patton, 2002). Open-ended questions were used and all interviews started with an open question: Can you tell me about your feelings and thoughts when you got to know that your sibling needed a stem cell donor for transplantation and you were asked if you were willing to be tested to become that donor? The interviews continued with further questions in order to lead the informants to expand their answers and to clarify their thoughts and experiences about being a stem cell donor for a sibling.
Method
Data analysis
Design
The interviews were transcribed verbatim. The transcribed text was subjected to content analysis, inspired by the description of Graneheim and Lundman (2004). Content analysis was used not only to understand the manifest data but also to interpret the latent
A qualitative approach with interviews was chosen for this study, since qualitative research on sibling donors is valuable and
Fig. 1. Flowchart illustrating the donation process for sibling donors. The time schedule is approximate and the flowchart is schematic.
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content. The first author (AK) simultaneously listened to and read all the interviews to check the accuracy of the transcript, become familiar with the text and gain a sense of the whole. Thereafter, each individual interview was divided into meaning units (sentences or paragraphs) and labelled with a code, in accordance with the purpose of the study, i.e. to explore the experiences of being a stem cell donor for a sibling prior to donation. All interview codes were compared and subcategories were identified based on differences and similarities. The subcategories were finally grouped into eleven categories. The ultimate step in the analysis of the interviews was to interpret the underlying meaning of all codes, subcategories and categories, which resulted in the formulation of one main theme and four subthemes. The first author (AK) made the analysis but, in order to increase trustworthiness (Lincoln and Guba, 1985; Polit and Beck, 2012) discussions between the first, second (IB) and fourth (MB) authors were held regularly throughout the entire process. The second (IB) and the fourth (MB) authors have significant experience in carrying out qualitative research, and interpreting interviews. Identified codes, subcategories, categories, subthemes and overall theme from all ten interviews were discussed among the three authors. Alternative ways of interpreting, categorizing and organizing data were continuously and carefully discussed. The discussions resulted in final agreement regarding the results of the analysis. Ethical considerations This study was approved by the Regional Ethical Review Board for Southern Sweden (Dnr 2009/655). Written and oral information about the study was provided by the first author during the informants' visits to the hospital 2e3 weeks prior to donation. In accordance with the Declaration of Helsinki (World Medical Association, 2013), the participants were informed that participation was voluntary and that they could withdraw at any time without there being any negative consequences concerning treatment and care. The participants were assured that their confidentiality would be respected throughout the research process. The first author telephoned the participants some days after the visit to ask for verbal informed consent and a time and place for the interview was set. Written informed consent was obtained from the participants just prior to the interview. Results Participant characteristics Five men and five women participated in the study. The median age of the sibling donors at the time of the interviews was 54 years (range 26e66 years). The median age of the corresponding recipients was 61.5 years (range 19e68 years). The gender constellation was: male donor to male patient (n ¼ 3), male donor to female patient (n ¼ 2), female donor to male patient (n ¼ 1), female donor to female patient (n ¼ 4). Nine of the donors eventually underwent peripheral blood stem cell collection and one underwent bone marrow harvest. Diagnoses and other characteristics of the corresponding sick siblings are included in the paper that reports the recipients' study (Kisch et al., 2014). Being a cog in a big wheel The main theme Being a cog in a big wheel emerged from the analysis and was supported by four subthemes Being available, Being anxious, Being concerned and Being obliged with two or three categories under each of the subtheme, giving a total of eleven (Fig. 2). Being a sibling donor is described by the participants as
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going through a process they have got into accidentally because of their sibling's serious illness, hence, they have not volunteered to a donor registry but have just happened to become donors. In the time prior to donation they experienced a mixture of positive and negative emotions and thoughts. Expressions of happiness about donating and the possibility of making a difference appear together with descriptions of being anxious, concerned and obliged. The sibling donors have a dual role; apart from being a relative they are also a source of stem cells, vital for increasing their sibling's chances of survival. Some donors experience being considered a hero by relatives and friends, but they consider themselves only one component in the donationetransplantation procedure. Many of the narratives include descriptions of the donationetransplantation as a joint project with a common goal for the two siblings in which the donor plays a crucial part. Having a seriously ill sibling and the quality of their relationship influence the donors' experiences, i.e. whether the relationship is intimate, strained or if there is no contact at all. For some donors the relationship with the sibling did not change after the decision to become the donor, while for others it improved. Thoughts about if and how the relationship is going to change after the donationetransplantation occur among all donors and wishes are expressed about a future improvement in their relationship as a consequence of the donation. All of the donors emphasized and appreciated the confidentiality of the care, i.e. the separate care of the donor and the sibling recipient by different physicians and nurses. However, a majority of the donors expressed the wish that they had been offered the possibility of talking to a psychosocial professional, e.g. a psychologist, because of the difficulties of talking to relatives about their emotions. The donors said that not talking about being a donor is a consequence of minimizing their role compared to the sick sibling and considering themselves as only one part in a bigger project: Being a cog in a big wheel. The categories identified are woven into the text below, printed in italics, with the subthemes used as headings. Quotations are included to illustrate the participants' experiences associated with each category in their own words.
Being available The majority of the narratives are pervaded by a focus on helping the sick sibling and being ready to do something as a sibling. The willingness to help and being available when needed and a wish to make a difference are shown clearly. Feeling happy without hesitation demonstrates happiness and a sense of gratitude at being able to donate and a wish to donate however big or small the patient's chances of recovering. “I believe this is the natural thing to do … This is what you would do for your sibling. No one could influence me in this. It did not need to be supported by a decision.” (D2) Focussing on being able to donate is shown by the donors' descriptions of focussing on staying healthy in order to be able to donate, choosing the procedure for the collection of stem cells that is best for the sick sibling, giving support to that sibling and not thinking about the risks associated with the donation. “I just want her to be alive. That's what I want and then I don't give a damn about anything else.” (D9) Giving a concrete gift encompasses the importance of being useful and that donating stem cells is perceived as a simple effort which might make a big difference. Giving a concrete gift is also shown by the use of expressions about being unique in their ability
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Fig. 2. Illustration of the process experienced by sibling stem cell donors prior to donation including a mixture of emotions and thoughts e Being a cog in a big wheel.
to give life to the sick sibling and about the pleasure they feel in being the person who supplies the ‘spare parts’.
evident risk of dying, but also worries about the sibling's anxiety about the disease and treatment.
“A way of giving, even to have the chance of giving her life, … so it feels as if there is something I can do out of pure love, as sister to sister … I'm the only one in the world, just now, who is going to be the tool for K (patient) getting another chance to be cured and to live … This is so very, very concrete, it's my little stem cells lying there ready to provide the building blocks from my body, and I can: ‘but you can do a bit of building on my cells’ … So it feels like being of some use, without underlying intentions.” (D5)
“It was actually just that what you think about is rather how well will she do … Of course, she will live till the next year.” (D6)
Being anxious All narratives reveal signs of the donors being anxious; either to a large extent about different parts of the donationetransplantation procedure or to a lesser extent. Worrying about not being able to donate and what consequences this will have for the sick sibling are described as happening at two time points; while waiting for the results from the HLA typing and later while waiting for the result of the health investigation to be approved as a donor. “It was that uncertainty which, if you counted in percentages and 37.5 percent was the chance that either I or my brother would be suitable, but that I alone should be the donor and functional was a 25 percent chance. You thought about that, what happens if we aren't suitable?” (D1) Since the donors are also siblings, in most cases they keep in touch and are worrying about the sick sibling. The donor worries about and is aware of the severity of the sibling's disease and their
The donor is going to go through a procedure in order to help, but the procedure is associated with unpleasantness and risks, as is demonstrated in expressions of worrying about the stem cell collection. Thoughts and worries about how the collection will proceed, if it will hurt and what other side effects and inconveniences will occur occupy the participants' minds. “A little anxiety about being connected then. That my blood will circulate in a machine and then back again, that it will work. It's a bit frightening.” (D3)
Being concerned The donors' sense of concern about others is clearly demonstrated in the narratives. The donors are concerned about the sick sibling, but also about what the donation and transplantation will entail for other relatives and a wish to protect and take care of those relatives. Feeling responsible for the sick sibling is revealed by ideas of being responsible for the sibling's life and their common relations, including the responsibility they will feel if the donation should cause the sibling's death. The donor also tries to protect the sick sibling by withholding information about the risks and inconveniences associated with the donation, the donor's worries, and sometimes hesitation, about donating.
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“I think I have to carry a lot of the burden now … I will feel responsible for him in a way that I didn't do before, I think.” (D8) Family members of the donors are worried about the donation procedure which leads to donors protecting their own family from some information about the donation and its risks and from their own worries. This is demonstrated by expressions about keeping emotions and thoughts to themselves. “It's clear that my wife is a bit worried, when she reads about it, but I haven't let her read exactly everything, but I have explained roughly anyway and she thinks it sounds a bit unpleasant.” (D1) Caring about other siblings who do not donate is illustrated by thoughts regarding the influence of the donation on other siblings. Other siblings appear to feel left out of the shared communion between the sibling donor and the sick sibling or, in contrast by feelings of relief at not having to donate. However, the sibling donors do not know how other siblings feel because none of the donors had talked about this issue with their siblings, but all had thought about it and had a sense of being responsible for caring for them. “But then I thought of how my brother reacted. That he wasn't a match, because from the beginning he said, both to J (the other sister) and me: ‘It must be me!’ So it's like you have to think of your siblings a bit and respect them so they don't get unhappy … I thought mostly of him in fact … that I would collect him later in the evening so that we could spend some sibling time together … It felt as if he needed to talk to us a bit.” (D9)
Being obliged To be a sibling donor is associated with feelings of pressure and being obliged to donate. In the majority of the narratives there are descriptions of how the donation procedure caused the donor stress. They feel as if they have no choice, feeling compelled to donate, which often comes from the donors themselves. However, feeling compelled to donate also encompasses a feeling of being taken for granted, based on the actions of the sick sibling, relatives, friends and colleagues. Experiences of being forced and that the donation has taken over the donor's life are revealed. “I think that if you are a sibling then you have no choice … I feel almost forced, ‘violated’, exposing my body to something that I would never normally do … It's very clear to everybody around me that I will do it. And it's quite clear to me, too, that I will do it but that doesn't stop you from thinking about it a bit, it's almost like looking at a film, it's a bit unreal … It's as if it's taken over my life.” (D8) Feeling guilty is demonstrated in the donors' expressions of the fear of feeling a failure if the sick sibling were to die as a consequence of the donation. Feeling guilty is also based on their feelings of finding it hard to go through the donation procedure, and some donors express the wish that they did not have to donate. “It's no joke to know that he is seriously ill. I don't tell anyone that I have doubts … That I might perhaps not have to do it, it would be a relief, but then I am ashamed, have feelings of guilt because I think like that.” (D3)
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with its variety of emotions and thoughts. The experiences sometimes appear one at a time and sometimes several together, depending on the circumstances, as shown in Fig. 2. They may feel uncertainty and loneliness in the waiting period between being asked to become a donor and the donation. The main theme Being a cog in a big wheel is a description of the process the sibling donors experience of being one part in a bigger project, but a very important and crucial part. Sibling donors have been asked to become a donor, they have not volunteered to a donor registry. They have the dual role of being a family member and a donor, which may entail psychological vulnerability in that their role differs from that of the sibling recipient and other family members. This role is also different from that of an unrelated donor, where the donor and the recipient are unknown to each other. The experience of being a donor for a sibling may differ depending on family dynamics, including the kind of relationship the donor has with the sick sibling; positive because of a supportive family network, or negative due to tensions between family members (Christopher, 2000; Labott and Pfammatter, 2014; Pillay et al., 2012; Williams et al., 2003). All the donors in the study said that they just happened to become donors; it was not a voluntary choice. However, all the donors also described themselves being available and ready to help, focussing on the sick sibling while also worrying about themselves and feeling obliged to donate. The feeling of being forced, compelled to donate, come from the donors themselves but also as social pressure from the sick sibling and other relatives. This is consistent with the results of the study by de Oliveira-Cardoso et al. (2010). It is important to highlight the major results of the donors keeping silent concerning their emotions about being a donor. They appear to feel alone in the process and do not want to upset the sick sibling or other relatives with their thoughts and emotions. Their worries for themselves and their simultaneous awareness of the difference in severity of the process between themselves and their sick sibling make them feel guilty. This is one explanation for their minimizing their own role and effort and for their not having talked about their emotions and thoughts, which might cause extra pressure and lead to psychosocial consequences for the sibling donor. It became evident from the results that the quality of the relationship with the sick sibling influences the experiences, as has been shown earlier (Labott and Pfammatter, 2014; Pillay et al., 2012). The results show that if the relationship between the siblings is good the donor often has no or very little doubt about donating. At the same time the donors with a close relationship with the sick sibling seem to have a greater sense of being obliged to donate and a responsibility for the sibling, connected with feelings of anxiety about the consequences of the transplantation. However, all donors were willing to help their sibling irrespective of the relationship. Our study clearly shows that the pressure experienced by the sibling donors also includes a sense of being concerned about others. The donors know intellectually that they make an important effort to help, but at the same time they often feel obliged to be strong and take care of the sick sibling and other relatives. This role might be a heavy burden to carry and the results show that the donors wish to talk to a psychosocial professional. The sibling donors' emotional needs should therefore be assessed in order to provide adequate preparation for the donation, including information and emotional support (Pillay et al., 2012). Implications for clinical practice and research
Discussion The results of this study clearly elucidate the complexity of the process experienced by sibling stem cell donors prior to donation,
To our knowledge this is the first study in a western country where sibling stem cell donors, the majority donating peripheral blood stem cells, were interviewed about their experiences prior to donation. Studies of experiences of adult sibling stem cell donors do
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exist but only to a limited extent (Christopher, 2000; de OliveiraCardoso et al., 2010; Munzenberger et al., 1999; Pillay et al., 2012; Wiener et al., 2008; Williams et al., 2003). This study shows that in providing care for sibling stem cell donors the nurses should be aware of the complexity of the process they go through. One important challenge for nurses, and a way of easing the burden of obligation, responsibility and guilt in sibling donors, is to give adequate individualized educational and psychological support pre-donation, paying attention to the donors' needs and wishes to talk to professionals. The donors' needs for support after the donation should also be investigated and followed up. We want to emphasize the importance of confidentiality in the provision of care, by separating the care and information to the donor and the corresponding recipient, which has been pointed out earlier (Clare et al., 2010; Kisch et al., 2013; O'Donnell et al., 2010; van Walraven et al., 2010). As the donors feel that as a sibling they do not have a choice and are obliged to donate, it is important to ensure that potential sibling donors are always offered the chance to decline HLA typing and donation. The result that some donors experience a change in their relationship with the sick sibling should be seen in relation to sibling recipients' experiences of changed relationship with the donor after the decision to donate (Kisch et al., 2014). We may assume that if the donor experiences a strengthened relationship, the patient has the same kind of experience, and the reverse if the relationship is felt to be weakened. However, the sibling donor and the sibling recipient might have opposite experiences and expectations of changes in the relationship. To investigate whether and how donors' and recipients' relationships change over time and to elucidate their experiences we have two ongoing follow-up interview studies with the donors and the sibling recipients respectively in this study up to one year after donationetransplantation. This is consistent with advice concerning future prospective longitudinal research (Pillay et al., 2012). Strengths and limitations The results of this study have been evaluated in terms of trustworthiness (Lincoln and Guba, 1985; Polit and Beck, 2012). Credibility was strengthened by the differences in the participants' age, gender and kind of relationship with the sick sibling. Credibility was further increased by making the interpretation of the data visible to the reader through incorporating quotations from the participants' narratives into the text. The quotations are translated from Swedish, but to reduce the threat to credibility they have been translated and back-translated. The first author made efforts to increase dependability by attempting, during the interviews, to achieve a mutual understanding of the meaning of the questions and responses and by inviting the participants to deepen their narratives. The first author's pre-understanding from the care of sibling stem cell donors could have influenced the interpretation of the interviews, but the open dialogue with the other authors, who have no experience in this context but are experienced in qualitative research, helped to minimize potential misinterpretation and enhanced the confirmability and trustworthiness of the study. Concerning transferability, the results of this study may be applicable to sibling stem cell donors in other settings. One limitation with this study is that only Swedish-speaking donors were included. Nowadays it is not uncommon for sibling donors come to a foreign country, in this case Sweden, just for health investigation and donation. These donors do not speak the language and do not live in the country where they donate. Investigations of sibling donors speaking other languages and living in other countries than the country for donation are needed to gain knowledge about their experiences, needs and cultural differences. It is a challenge for health-care professionals to optimize the
information and care for this growing group of donors with different languages and cultures. Conclusion To conclude, this study clearly shows that, prior to donation, people who are stem cell donors for a seriously ill sibling go through a complex process they have accidentally got into. They have to deal with a mixture of experiences concerning being available, anxious, concerned and obliged, and their key role as donor can be described as Being a cog in a big wheel. The quality of the relationship with the sick sibling has an impact on their experiences. Knowledge that the donors experience these emotions can help nurses to better understand the donors and provide individualized supportive care in a professional manner. We want to stress that the care of each donor should take into consideration his or her personal situation and needs, including the relationship with the sibling recipient. The results of this study can certainly contribute to the quality of care and support for haematopoietic sibling stem cell donors. Conflict of interest The authors declare they have no conflicts of interest. Acknowledgement We would like to thank the sibling donors who agreed to participate in this study. References Billen, A., Madrigal, J.A., Shaw, B.E., 2014. A review of the haematopoietic stem cell donation experience: is there room for improvement? Bone Marrow Transplantation 49 (6), 729e736. Christopher, K.A., 2000. The experience of donating bone marrow to a relative. Oncology Nursing Forum 27 (4), 693e700. Clare, S., Mank, A., Stone, R., Davies, M., Potting, C., Apperley, J.F., Research Subcommittee of the EBMT Nurses Group, 2010. Management of related donor care: a European survey. Bone Marrow Transplantation 45, 97e101. Copelan, E.A., 2006. Hematopoietic stem-cell transplantation. The New England Journal of Medicine 354 (17), 1813e1826. de Oliveira-Cardoso, E.A., dos Santos, M.A., Mastropietro, A.P., Voltarelli, J.C., 2010. Bone marrow donation from the perspective of sibling donors. Revista LatinoAmericana de Enfermagem 18 (5), 911e918. Fortanier, C., Kuentz, M., Sutton, L., Milpied, N., Michalet, M., Macquart-Moulin, G., et al., 2002. Healthy sibling donor anxiety and pain during bone marrow or peripheral blood stem cell harvesting for allogeneic transplantation: results of a randomised study. Bone Marrow Transplantation 29, 145e149. Garcia, M.C., Chapman, J.R., Shaw, P.J., Gottlieb, D.J., Ralph, A., Craig, J.C., et al., 2013. Motivations, experiences, and perspectives of bone marrow and peripheral blood stem cell donors: thematic synthesis of qualitative studies. Biology of Blood and Marrow Transplantation 19 (7), 1046e1058. Graneheim, U.H., Lundman, B., 2004. Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurse Education Today 24 (2), 105e112. Halter, J., Kodera, Y., Ispizua, A.U., Greinix, H.T., Schmitz, N., Favre, G., et al., 2009. Severe events in donors after allogeneic hematopoietic stem cell donation. Haematologica 94 (1), 94e101. Kennedy, G.A., Morton, J., Western, R., Butler, J., Daly, J., Durrant, S., 2003. Impact of stem cell donation modality on normal donor quality of life: a prospective randomized study. Bone Marrow Transplantation 11, 1033e1035. Kisch, A., Dykes, J., Lindmark, A., Lenhoff, S., 2008. A proposed plan for the management.of adult sibling donors. Bone Marrow Transplantation 42, 357e358. €, I., 2013. Potential adult sibling stem Kisch, A., Lenhoff, S., Bengtsson, M., Bolmsjo cell donors' perceptions and opinions regarding an information and care model. Bone Marrow Transplantation 48 (8), 1133e1137. €, I., Bengtsson, M., 2014. Having a sibling as donor: Kisch, A., Lenhoff, S., Bolmsjo patients' experiences immediately before allogeneic haematopoietic stem cell transplantation. European Journal of Oncology Nursing 18, 436e442. Labott, S., Pfammatter, A., 2014. The influence of the donor-recipient relationship on related donor reactions to stem cell donation. Bone Marrow Transplantation 49 (6), 831e835. Lincoln, Y.S., Guba, E.G., 1985. Naturalistic Inquiry. Sage Publications, Beverly Hills, California.
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