Symptom burden, preparedness, selfefficacy and self-care in allogeneic haematopoietic cell transplantation

Background: Undergoing an Allogeneic haematopoietic cell transplant (allo-HCT) can have a long-term physical, psychological, social and existential impact on the patient. First, the patient's life is threatened by a serious diagnosis that allo- HCT may cure; then the patient's life is challenged by a wide range of symptoms, sometimes lifelong if chronic conditions develop. The majority of patients adapt to life following allo-HCT but should know what to expect in terms of symptoms and limitations in everyday life. Post allo-HCT challenges can be of a physical, psychological, social and existential nature for which patients should be prepared and confident in their own ability to cope after allo-HCT. Registered nurses (RNs) play a key role through dialogue and education to prepare patients for life after allo-HCT. There is little research on patients' preparedness for allo- HCT and their confidence in their ability to manage their health through self- management after treatment. In addition, there is little research on how preparedness and self-care are incorporated in the nursing care in allo-HCT.

Aim: The overall aim of this thesis was to describe symptom burden, nursing, preparedness, self-efficacy and self-care in the trajectory of allo-HCT.

Methods: Both quantitative and qualitative methods were used and included patients and RNs. Patients undergoing allo-HCT were recruited at the time of enrolment for allo-HCT (study I & IV) or by advertisement at the outpatient clinic (study III). Participating RNs worked in allo-HCT (study II & IV). Descriptive statistics and logistic regression analyses was used to analyse patients (n= 189) self-reported questionnaire data from 4 different time points (baseline, 4, 7 months and 1 year) (study I). Thematic analyse was used in study II, to analyse qualitative data from 6 workshops performed with RNs (n=12), working at the largest centre performing allo-HCT in Sweden. Descriptive content analysis was used in study III, to analyse qualitative data from individual interviews with patients (n=9), 3-12 months post allo-HCT. Study IV has a convergent parallel mixed methods design, where data were collected during a predefined time period. Patients completed questionnaires on 2 occasions and participated in an individual interview (n=12) 6-8 weeks after allo-HCT. RNs (n=9) from 2 clinics performing allo-HCT in Sweden were included in the study and participated in focus group interviews held on one occasion/clinic.

Results: Study I showed that high symptom burden, old age and low physical activity at 4 months were factors that had a statistically significant association with perceived poor general health one year after allo-HCT. A high symptom burden, presence of chronic immune reaction (cGvHD), and low physical activity at 4 months were factors statistically significant with sick leave at 1 year post allo-HCT. The most commonly reported symptoms were fatigue, physical weak- ness, and disinterest in sex, which were reported at all measurement points. Distressing symptoms varied more than symptom prevalence during the first year after allo-HCT. The symptoms reported as most distressing were difficulty eating, discomfort during sex and physical weakness. In Study II, an overarching theme was defined that described nursing in allo-HCT as a balancing act, illu- strating the conditions for performing nursing in a highly medical-technical en- vironment. The overall theme was followed by three sub-themes: Fragmented care vs. holistic care, describing how the holistic view of care was lost when care became fragmented: Proximity vs. distance, highlighting the balance between seeing the patient as an independent person despite illness and need for sup- port: Teamwork vs. stand-alone, showing the difficulties of adapting to both teamwork and independence in nursing. As a result of the content analysis in Study III, an overarching theme developed that illustrated the situation described by patients in the interviews: Life is taken apart, then you have to know how to put the pieces together, and four sub-themes: Convert information into some- thing understandable; Taking responsibility, maintaining and preparing for an uncertain time in life; Balancing vigilance with independence and Reorientating in an altered body places new demands on self-care. This highlights the dis- mantling of life during treatment and how measures and approaches can build a new life, as described by patients. In study IV, patients reported overall high self- care scores, with no statistically significant change from baseline to 4 month follow up. Patients expressed that the Assessment of Rehabilitation Needs Checklist (ARNC) with a subsequent conversation with a RN contributed to preparedness. RNs felt that through the use of the ARNC and the conversation, care became more person-centered, as patients were able to raise issues important to them. The tool was therefore mainly used to highlight problems on admission, while preparedness and self-care issues were not addressed either at this time or later in the course of care.

Conclusion: The aim of this thesis was to describe symptom burden, nursing care, preparedness, self-efficacy and self-care in the context of allo-HCT. The results show that systematic symptom assessment is important to detect symptoms at an early stage after allo-HCT, as symptoms can affect recovery at a later stage of the allo-HCT course. RNs have a key role in educating and preparing patients through person-centered nursing interventions, such as dialogue and teaching. Nursing has partly moved towards more person-centered care by using a structured conversation tool. However, the conversation tool was used on only one occasion during the care period, which may be perceived as too infrequent in terms of capturing the symptoms and concerns that patients may experience. From a medical point of view, patients' needs are met down to the cellular level, but to meet the individual needs of patients, person-centred care needs to be further developed to include preparedness and self-care. RNs therefore need to become more aware of their important role in continuously educating and informing patients, as part of the nursing associated with allo- HCT. This can help to bridge the knowledge gap that may arise for the patient when transitioning from the safe environment of a care unit to independent self- care at home.

List of scientific papers

I. * Eriksson, L, V., Holmberg, K., Lundh Hagelin, C., Wengström, Y., Bergkvist, K., & Winterling, J. (2023). Symptom burden and recovery the first year after allogeneic hematopoietic stem cell transplantation. Cancer Nursing, 46 (1), 77-85. https://doi.org/10.1097/NCC.0000000000001077. * L.V.E and K.H contributed equally to this work

II. Holmberg, K., Bergkvist, K., Adalsteinsdóttir, S., Wengström, Y., & Lundh Hagelin, C. (2023). Nursing as a balancing act in allogeneic hematopoietic cell transplantation-nurses 'experiences through participation in workshops. European Journal of Oncology Nursing, 63, 1-6. https://doi.org/10.1016/j.ejon.2023.102300

III. Holmberg, K., Bergkvist, K., Wengström, Y., & Lundh Hagelin, C. (2024). Dismantle and rebuild: The importance of preparedness and self-efficacy before, during and after allogeneic haematopoietic cell transplantation. Journal of Cancer Survivorship. https://doi.org/10.1007/s11764-024-01622-2

IV. Holmberg, K., Bergkvist, K., Wengström, Y., & Lundh Hagelin, C. (2024). Preparedness, self-efficacy and self-care in allogeneic hematopoietic cell transplantation - a mixed methods study of patients' and nurses' perceptions. [Manuscript]