ABSTRACT
AIM: To provide a rich description and in-depth understanding of the recipient-donor allogeneic hematopoietic stem cell transplantation experience. BACKGROUND: A stem cell transplant has a high likelihood of improving symptoms of sickle cell disease in adults. While studies have reported the transplant experiences of recipients and donors with haematological malignancies, no published reports have examined the experience of both adult recipients with sickle cell disease and their donors. DESIGN: Exploratory qualitative descriptive analysis. METHODS: We conducted individual interviews with 13 recipients and donors (eight males, five females) representing five recipient-donor dyads and one recipient-donor triad from one Midwest transplant centre between August 2017-February 2018. Interviews were digitally audio-recorded, transcribed verbatim and analysed using conventional content analysis. FINDINGS: Five themes were identified: the downward spiral and a second chance; getting the monster off my back; difficult and manageable; it was worth it; and relating to the healthcare team. CONCLUSIONS: The results provide a description and insights into the complex nature of the stem cell transplant experience in sickle cell disease from the perspectives of both recipients and donors. IMPACT: Health provider awareness of recipient-donor experiences can contribute to family-centred care that supports the health and quality of life for both recipients and donors. This understanding promotes high quality clinical care and improved communications by taking into account the knowledge, values and informed preferences of recipients and donors and contributes to improved decision-making and clinical care. Future research can assess family experiences that support informed choice for potential transplant candidates.
Subject(s)
Anemia, Sickle Cell/psychology , Anemia, Sickle Cell/therapy , Hematopoietic Stem Cell Transplantation/psychology , Siblings/psychology , Tissue Donors/psychology , Transplant Recipients/psychology , Transplantation, Isogeneic/psychology , Adult , Female , Humans , Male , Middle Aged , Midwestern United States , Young AdultABSTRACT
BACKGROUND: Allogeneic hematopoietic stem cell transplantation (HSCT) offers a potential cure for a variety of diseases but is also associated with significant risks. With HSCT the donor is either a relative, most often a sibling, or an unrelated registry donor. PURPOSE: The aim was to explore patients' experiences, immediately before transplantation, regarding having a sibling as donor. METHOD: Ten adult patients with sibling donors were interviewed before admission for HSCT. The interviews were digitally recorded, transcribed verbatim and subjected to qualitative content analysis. RESULTS: The main theme Being in no man's land is a metaphor for the patients' complex situation with its mixture of emotions and thoughts prior to transplantation. The three subthemes Trust in the sibling donor, Concern about others and Loss of control cover the various experiences. The patient's experiences are influenced by their personal situation and the quality of the relationship with the sibling donor. While patients feel secure in having a sibling donor, they are dependent for their survival on the cell donation and feel responsible for the donor's safety during donation. These emotions intensify the patients' sense of dependency and loss of control. CONCLUSIONS: In caring for HSCT patients the nurses should be aware of the complexity of the patients' situation and keep in mind that having a sibling donor might imply extra pressure, including a sense of responsibility. Caring for both patients and sibling donors optimally is a challenge, which needs further improvement and exploration.
Subject(s)
Emotions , Hematopoietic Stem Cell Transplantation/psychology , Living Donors/psychology , Siblings/psychology , Transplantation, Isogeneic/psychology , Adult , Aged , Attitude to Health , Female , Humans , Male , Middle Aged , Sweden , Transplantation Conditioning/psychology , Young AdultABSTRACT
OBJECTIVES: Renal diseases and their treatment can cause distress and psychosocial problems for both patients and relatives. METHODS: Relationship dynamics and parameters of quality of life were assessed in 10 genetically related (brothers) and 14 genetically unrelated donor-recipient pairs (spouses) involved in living kidney donation (LKD). RESULTS: LKDs were described by related donors and recipients as fundamentally positive and in many cases led to an intensification of the relationship between donor and recipient. LKDs between unrelated donors and recipients appeared to achieve the same results as donations between related donors and recipients. Particularly the general desire to help determined the decision-making process of donors. CONCLUSION: In addition to general clinical parameters, especially motivational and relationship dynamics should be evaluated in the pre- and postoperative clinical psychological assessment of potential donors and recipients of LKD.
