PURPOSE: Allogeneic hematopoietic stem cell transplantation (HSCT) is an intensive curative treatment that increases family caregivers' burden. The aim of this study was to explore the feasibility of remotely assessing and addressing family caregivers' support needs in terms of demand and acceptability using the Carer Support Needs Assessment Tool Intervention (CSNAT-I) in the HSCT context.

METHODS: CSNAT-I consists of an evidence-based tool and a five-stage person-centred process. The intervention was performed remotely by two designated nurses from two HSCT centres, one before HSCT and the second 6 weeks after (November 2020 to March 2021). To capture the experiences of using CSNAT-I, interviews were conducted with family caregivers and reflections were gathered from the designated nurses.

RESULTS: Of 34 eligible family caregivers, 27 participated, 70% were partners and the rest children, siblings or other relatives. The main support needs were knowing what to expect in the future and dealing with your feelings and worries. The most frequent support actions according to CSNAT-I were psychological support and medical information. Four categories summarised family caregivers and designated nurses' experiences: CSNAT-I was relevant and became an eye opener; nurses' experiences were important for enabling trustful CSNAT-I conversations; CSNAT-I provided family caregivers with support and a sense of security; and CSNAT-I gave family caregivers insight and enabled change.

CONCLUSION: Both family caregivers and designated nurses experienced that using CSNAT-I in an HSCT context was feasible and had the potential to provide valuable support for most of the participating family caregivers.

PURPOSE: To examine differences in health-related quality of life (HRQoL) between native and foreign-born gynaecological cancer patients in Sweden, taking into account clinical, demographic, and socioeconomic factors.

METHODS: The 30-item European Organisation for Research and Treatment of Cancer quality of life questionnaire (QLQ-C30) and a study-specific questionnaire covering demographic and socioeconomic factors were answered by 684 women aged ≥ 18 years old, diagnosed in 2014, 2016, or 2018 with gynaecological cancer in the Stockholm-Gotland health care region, Sweden. Clinical data were obtained from the Swedish Cancer Register. Data were analysed using the Kruskal-Wallis test and linear regression.

RESULTS: The women had a mean age of 65.4 years, with 555 (81.1%) born in Sweden, 54 (7.9%) in other Nordic countries (ONC), 43 (6.3%) in other European countries (OEC), and 32 (4.7%) in non-European countries (NEC). HRQoL differed significantly between the four groups for 14 of the 15 QLQ-C30 scales/items. On average, Swedish-born women scored 2.0, 15.2, and 16.7 points higher for QoL/functioning scales/items and 2.2, 14.1, and 18.7 points lower for symptom scales/items, compared with ONC-, OEC-, and NEC-born women, respectively. In adjusted analyses, none of the differences between Swedish-born and ONC-born women were significant, while for OEC- and NEC-born women the differences were significant for most QLQ-C30 scales/items.

CONCLUSION: HRQoL differs between native and foreign-born gynaecological cancer patients in Sweden, with lower HRQoL the further from Sweden the women are born. A more individualised cancer care, with tailored support to optimize HRQoL is needed for this vulnerable group of patients.

Developments in cancer care have resulted in improved survival and quality of life. Integration of acute and palliative cancer care is desirable, but not always achieved. Fragmented care is associated with sub-optimal communication and collaboration, resulting in unnecessary care transitions. The aim of this study was to explore how health care professionals, from both acute and palliative care, perceive clinical decision-making when caring for patients undergoing active cancer treatment in parallel with specialized palliative care at home.

METHODS: Qualitative explorative design, using online focus-group interviews, based on patient-cases, among health care professionals (physicians and nurses) and Framework Analysis.

RESULTS: Six online focus-group interviews were performed. Few signs of systematic integration were found, risking fragmented care, and putting the patients in a vulnerable situation. Different aspects of uncertainty related to mandates and goals-of-care impacted clinical decision-making. Organizational factors appeared to hinder mutual clinical decision-making as well as the uncertainty related to responsibilities. These uncertainties seemed to be a barrier to timely end-of-life conversations and clinical decisions on optimal care, for example, the appropriateness of transfer to acute care.

CONCLUSIONS: Lack of integration between acute and palliative care have negative consequences for patients (fragmented care), health care professionals (ethical stress), and the health care system (inadequate use of resources).

PURPOSE: The study aimed to explore family caregivers' support needs prior to allo-HSCT, how these change over time and whether they are associated with demographic factors and caregiver outcome.

METHODS: This longitudinal repeated measure study included 87 family caregivers of allo-HSCT recipients: 63% were partners, 74% women, 65% lived with the recipient, and their mean age was 54 years. They completed the 14-item Carer Support Needs Assessment Tool (CSNAT) and caregiver outcome measures (caregiver burden, anxiety, depression, preparedness for caregiving and general health) prior to allo-HSCT and 3, 6 and 16 weeks later.

RESULTS: The two top support needs prior to allo-HSCT were 'knowing what to expect in the future' (79%) and 'dealing with your own feelings' (70%). Several support needs were associated with younger age and not being a partner, while higher needs implied worse caregiver outcomes for at least one of the outcomes prior to transplantation. Most support needs remained the same at the last follow-up.

CONCLUSION: The findings that high support needs are often associated with worse caregiver outcomes and most support needs do not diminish over time indicate that more attention should be placed on the situation of family caregivers.

The aim of this study was to describe family members' life situation and experiences of care in two different care settings, the patient's home or in hospital during the acute post-transplantation phase after allogeneic haematopoietic stem cell transplantation (HSCT). Data were collected through semi-structured interviews with 14 family members (seven women and seven men). An inductive qualitative content analysis was used to analyse the data. The majority of the family members' (n = 10) had experiences from home care. The findings show the family members' voice of the uncertainty in different ways, related with the unknown prognosis of the HSCT, presented as Being me being us in an uncertain time. The data are classified into; To meet a caring organisation, To be in different care settings, To be a family member and To have a caring relationship. Positive experiences such as freedom and security from home care were identified. The competence and support from the healthcare professionals was profound. Different strategies such as adjusting, having hope and live in the present used to balance to live in an uncertain time. The healthcare professionals need to identify psychosocial problems, and integrate the psychosocial support for the family to alleviate or decrease anxiety during HSCT, regardless of the care setting.

PURPOSE: Earlier studies have shown that home care during the neutropenic phase after allogeneic hematopoietic stem cell transplantation (allo-HSCT) is medically safe, with positive outcomes. However, there have been few results on long-term outcomes after home care. The aims of this study were to compare general health, symptom occurrence, and self-efficacy in adult survivors who received either home care or hospital care during the early neutropenic phase after allo-HSCT and to investigate whether demographic or medical variables were associated with general health or symptom occurrence in this patient population.

METHODS: In a cross-sectional survey, 117 patients (hospital care: n = 78; home care: n = 39) rated their general health (SF-36), symptom occurrence (SFID-SCT, HADS), and self-efficacy (GSE) at a median of 5 (1-11) years post-HSCT.

RESULTS: No differences were found regarding general health, symptom occurrence, or self-efficacy between groups. The majority of patients in both hospital care (77 %) and home care (78 %) rated their general health as "good" with a median of 14 (0-36) current symptoms. Symptoms of fatigue and sexual problems were among the most common. Poor general health was associated with acute graft-versus-host disease (GVHD), low self-efficacy, and cord blood stem cells. A high symptom occurrence was associated with female gender, acute GVHD, and low self-efficacy.

CONCLUSIONS: No long-term differences in general health and symptom occurrence were observed between home care and hospital care. Thus, home care is an alternative treatment method for patients who for various reasons prefer this treatment option. We therefore encourage other centers to offer home care to patients.

PURPOSE:

Treatment at home during the pancytopenic phase after allogeneic hematopoietic stem cell transplantation (HSCT) has been an option for patients at our center since 1998. Earlier studies have shown that home care is safe and has medical advantages. In this study, we present patients' experiences of care and support while being treated in hospital or at home during the acute post-transplantation phase.

METHOD:

Patients (n = 41, 22 in hospital care and 19 in home care) answered the SAUC questionnaire at discharge (when home, or from hospital). Both statistical analysis and deductive content analysis were used.

RESULTS:

The patients were highly satisfied with the care and support during the acute post-transplantation phase. Patients in home care were found to be more satisfied with care in general than patients in hospital care. The importance of safety, empathy, and encouragement from healthcare staff were expressed regardless of where care was given. Patients also felt that receipt of continuous, updated information during treatment was important and they had a strong belief in HSCT but were uncertain of the future regarding recovery.

CONCLUSIONS:

The main findings of this study were that in comparison to hospital care, home care does not appear to have a significant negative effect on patients' experiences of care and support during the acute post-transplantation phase. In addition patients in home care felt safe, seen as a person and encouragement seem to empower the patients at home. Thus, this study may encourage other transplantation centers to provide home care if the patients want it.

PURPOSE: This study examines sick leave (SL) and factors associated with full-time SL 1 year after allogeneic haematopoietic stem cell transplantation (allo-HSCT) in patients of working age from 2009 to 2016 (n = 122).

METHODS: Questionnaire data were collected on admission to the allo-HSCT unit, at 7 months and 1 year after allo-HSCT. Associations between factors and SL were analysed using logistic regression analyses.

RESULTS: One year after allo-HSCT, 76% of participants were on SL, with 36% on full-time SL. In univariable analyses, chronic graft-versus-host-disease (cGvHD) (OR 3.07; 95% CI 1.34-7.07; p = 0.01), having symptoms of depression at 7 months (OR 4.81; 95% CI 1.69-13.69; p = 0.00) and low levels of vocational satisfaction at 7 months after treatment (OR 3.27; 95% CI 1.27-8.41; p = 0.01) were associated with full-time SL 1 year after allo-HSCT. cGvHD (OR 3.43; 95% CI 1.35-8.73; p = 0.01) and having symptoms of depression at 7 months after allo-HSCT (OR 3.37; 95% CI 1.2-11.58; p = 0.02) remained significant in multivariable analysis.

CONCLUSION: The majority of allo-HSCT survivors were on SL 1 year after treatment, and cGvHD, low vocational satisfaction and depressive symptoms were associated with full-time SL 1 year after allo-HSCT.

IMPLICATIONS FOR CANCER SURVIVORS: Healthcare professionals need to be observant of and manage the consequences of cGvHD and patients' symptoms of depression in order to support them appropriately in their return-to-work process.

Allogeneic hematopoietic stem cell transplantation (HSCT) is mainly an intensive treatment option for hematology malignancies. During the past decades, improved care and treatment have been systematically developed. One example is the possibility for patients to choose to be at home rather than in the hospital during the early neutropenic phase after HSCT. Recent studies have shown positive medical advantages with home care. The overall aim of this thesis was to describe patients and family members’ life situation after HSCT, as well their experiences from two different care setting: the patient’s home or the hospital. Data from patient-reported experiences were used in studies I and II and patient reported- outcomes in study III. In study IV data from family members experiences were used. Data from 173 (study I n=41; study II n= 15; study III n= 117) patients and 14 family members (study IV) were included in the thesis.

In study I patients in both the hospital care group and the home care group expressed high satisfaction with the care and support during the acute post- transplantation phase.

In study II four categories were identified from the interviews with patients To be in a safe place, To have a supportive network, My way of taking control, and My uncertain way back to normal.

In study III, a cross-sectional survey was conducted and the majority of patients in both hospital care (77%) and home care (78%) rated their general health as ‘good’. A median of 14 symptoms were reported by patients in both hospital (0- 36) and home care (1-29). There were no significant differences regarding general health, symptom occurrence or self-efficacy between patients in hospital and those in home care.

In study IV interviews with family members generated a main category, Being me and being us in an uncertain time was identified and five generic categories To receive the information I need, To meet a caring organization, To be in different care settings, To be a family member, and To have a caring relationship.

In summary, numerous factors (the care routines, information, the competence and support from the health care team) related to the care were shown to influence the feeling of being safe regardless of care setting. Both patients and family members express the uncertainty associated with the HSCT. Different strategies (to have faith, being positive, hope and live in the present) were used to balancing the uncertainty. The majority of patients in both hospital care and home care rated their general health as ‘good’. A high symptom occurrence was reported in both groups in median five years post HSCT.

AIM AND OBJECTIVES: This study aimed to describe newly-graduated nurses' experiences of introduction processes and leadership within a hospital trainee programme.

BACKGROUND: For many, being a newly-graduated nurse is associated with stress, influenced by the challenge of the transition to independent nurse, coupled with the loss of mentorship due to nurse turnover and rapidly changing demands.

METHODS: A qualitative design with an inductive approach was chosen and four focus groups were convened. A total of nineteen nurses were included in the study. Data were analysed using qualitative content analysis. COREQ was used as EQUATOR checklist.

FINDINGS: The analysis resulted in three themes: Need for an introduction when facing a complex reality, Striving to stand on my own, and The importance of having an accessible and multi-skilled manager. The transition is a complex, dynamic and demanding process.

CONCLUSIONS: The orientation process from student to becoming an independent nurse is a challenging period. A flexible manager and a readily accessible leadership facilitate the newly-graduated nurse's striving to become an independent nurse. The study demonstrates that a trainee programme and support are essential in this process. There are indications that today's newly-graduated nurses have high expectations of coaching from the manager during the orientation process.

RELEVANCE TO CLINICAL PRACTICE: The hospital setting and its organisation are rapidly changing in relation to the increasing number of patients and their health status. In addition, there is a need for newly-graduated nurses to secure regrowth, to fill the ranks of experienced nurses leaving the field. Newly-graduated nurses increasingly perceive a gap between their training and clinical realities, thus necessitating changes in tutoring and their introduction to the work. This article is protected by copyright. All rights reserved.

PURPOSE: Registered nurses have a key role in supporting patients during the trajectory of allogeneic hematopoietic cell transplantation (allo-HCT). However, the circumstances for performing nursing are not previously outlined therefore the purpose of this study was to explore the conditions for nursing care in allo-HCT.

METHOD: An explorative design, inspired by Experienced based co-design was used to gather experiences, thoughts and visions of nursing care in allo-HCT by means of workshops. Thematic analysis was applied to analyse the data.

RESULT: An overarching theme that was defined from the data was nursing as a balancing act and illustrating conditions for performing nursing in a highly medical-technical environment. The theme included three sub-themes: Fragmented care vs holistic care outlining how the holistic approach to care disappeared when the care became fragmented; Proximity vs distance illuminating the balance between seeing the patient as an independent person despite illness and the need for support; Teamwork vs stand-alone demonstrating the difficulties inherent in adapting to both teamwork and independence in nursing.

CONCLUSION: This study shows that the conditions for RNs and nursing care in allo-HCT care is to balance tasks and approach towards the patient and themselves. RNs must weigh and balance what is most important in the moment and where something else often has to be put aside. It is difficult for RNs to find the time to plan each patient's care and to support the patient in the way they see as most optimal to prepare for discharge, self-care and rehabilitation.

Over the past 20 years, considerable healthcare resources have shifted from an inpatient to an outpatient setting. To be in an outpatient setting or at home after allogeneic haematopoietic stem cell transplantation (allo-HSCT) has been shown to be medically safe and beneficial to the patient. In this study we describe patients' experiences of different care settings (hospital or home) and a new life situation during the acute post-transplant phase after HSCT. Semi-structured interviews were conducted with 15 patients (six women and nine men) 29-120 days after HSCT. An inductive qualitative content analysis was performed to analyse the data. The analysis resulted in four categories: To be in a safe place, To have a supportive network, My way of taking control, and My uncertain return to normality. The findings showed that patients undergoing HSCT felt medically safe regardless of the care setting. The importance of a supportive network (i.e. the healthcare team, family and friends) was evident for all patients. Both emotional and problem-focused strategies were used to cope with an uncertain future. Being at home had some positive advantages, including freedom, having the potential for more physical activity, and being with family members. The study highlights some key areas thought to provide more personalised care after HSCT.

BACKGROUND: Cancer care trajectories are often complex, with potent multimodality treatments and multiple interactions with health care providers. Communication and coordination are challenging and the patients' responsibilities to take on more active roles in their own care are increasing.

OBJECTIVE: This study aimed to investigate associations between patient activation level and participation in cancer care, sociodemographic characteristics, clinical data, health-related quality of life (HRQoL) and helpfulness of received information.

METHODS: In this cross-sectional population-based study, patients completed questionnaires on patient activation, perceived participation, HRQoL, helpfulness of received information and sociodemographic characteristics. Responses to the patient activation measures (PAMs) were classified into four levels (higher levels indicating more activation). Data on age, sex and cancer diagnosis were collected from the Swedish Cancer Register.

RESULTS: Data from 682 patients were analysed. On comparing patients at PAM levels 1 and 4, the latter reported significantly higher possibilities to influence care decisions (46.6% vs. 20.8%) and to ask questions regarding treatment and care (93.4% vs. 68.4%). Patients at PAM level 4 reported wanting to influence decision-making to a higher extent, compared with patients at other PAM levels, and reported clinically significantly higher HRQoL. No significant differences were found regarding sociodemographic characteristics.

CONCLUSION: We found strong associations between perceived patient participation and activation levels, with limited possibility for participation among those with lower activation levels.

PATIENT OR PUBLIC CONTRIBUTION: Discussions with patient representatives have raised the importance of participation. The preliminary findings were presented and discussed in a workshop with representatives from 21 cancer patient advocacy groups.

Objective: Allogeneic hematopoietic stem cell transplantation (allo-HSCT) is a curative treatment associated with high morbidity and mortality. It is often necessary for family caregivers to become highly involved in the care, especially when patients return home after a long period of inpatient care. Family caregivers’ preparedness for the tasks and demands of the caregiving role prior to allo-HSCT might help them during this distressing time. The aim of this study was to explore whether demographic factors are associated with preparedness for caregiving prior to allo-HSCT and if such preparedness for caregiving is associated with caregiver outcomes in terms of caregiver burden, anxiety/depression, competence, self-efficacy, and general health among family caregivers.

Method: This correlational cross-sectional study included 86 family caregivers of patients to undergo allo-HSCT, who completed a self-administered questionnaire on preparedness, caregiver burden, anxiety/depression, competence, self-efficacy, and general health. Descriptive statistics and multiple regression models (linear and ordinal) were used to analyze the data.

Results: Family caregivers with a higher education and those who were the patient's partner were significantly associated with a higher level of preparedness for caregiving, while gender and age were not significant. Higher preparedness was significantly associated with higher competence and self-efficacy and lower symptoms of depression, even after the model was adjusted for education, relationship to the patient, gender, and age but not for anxiety or caregiver burden. Higher levels of preparedness were also significantly associated with better general health.

Significance of results: A higher level of preparedness for caregiving prior to allo-HSCT was associated with better family caregiver outcomes. Assessing family caregivers prior to allo-HSCT to identify those with insufficient preparedness might enable the provision of individually tailored psycho-educational support to help them cope with their caregiving role and prevent potential negative consequences.

BACKGROUND AND AIM: Family caregivers are often involved in helping recipients during allogeneic hematopoietic stem cell transplantation (allo-HSCT). Although the distress that often arises along the trajectory is evident to family caregivers, research on their perceptions of providing and receiving support is limited. The aim of this study was to explore family caregivers' experiences of providing and receiving support during allo-HSCT.

METHOD: Data were collected through semi-structured interviews with fourteen family caregivers 16 weeks after the recipient's allo-HSCT. Inductive qualitative content analysis was used to analyse the data.

RESULTS: The analysis revealed four generic categories that focus on prerequisites for family caregivers' ability to provide support: Individual characteristics influence the ability to be supportive, Social context influences the ability to be supportive, Medical information provides knowledge and a sense of participation and Interaction with the healthcare organization provides a sense of participation. These prerequisites are linked in the fifth generic category: Family caregivers' support is multifaceted and dependent on the recipient's health.

CONCLUSIONS: Family caregivers' risk of experiencing a stronger sense of uncertainty and lack of participation is higher in the absence of the above-mentioned prerequisites. Professional support is thus required, which implies that the healthcare organization is responsible for identifying the needs of each family caregiver and delivering individualized support.

BACKGROUND: Patients are affected by various symptoms after allogeneic hematopoietic stem cell transplantation (allo-HSCT) that can affect recovery. Research has mainly focused on symptom occurrence; thus, little is known about patients' overall symptom burden.

OBJECTIVE: The aim of this study was to examine patient-reported symptom burden in the first year after allo-HSCT and whether a high symptom burden 4 months after allo-HSCT predicts recovery, that is, general health and sick leave, 1 year after transplantation.

METHODS: Allo-HSCT patients aged 18 to 65 years were included (n = 189). Questionnaire data were collected on admission to the allo-HSCT unit, as well as 4 and 7 months and 1 year after allo-HSCT. Logistic regression evaluated relationships between demographic characteristics, chronic graft-versus-host disease, physical activity, and a high symptom burden.

RESULTS: Tiredness, susceptibility to infection, disinterest in sex, and physical weakness remained the most frequent symptoms, while distressing symptoms varied during the first year after allo-HSCT.Poor general health 1 year after allo-HSCT was associated with older age, low physical activity, and a high symptom burden 4 months after allo-HSCT. Full-time sick leave 1 year after allo-HSCT was associated with chronic graft-versus-host disease, low physical activity, and a high symptom burden 4 months after transplantation.

CONCLUSIONS: Experiencing a high symptom burden 4 months after allo-HSCT can affect recovery 1 year after transplantation. Furthermore, low physical activity 4 months after allo-HSCT can predict both general health and sick leave 1 year after transplantation.

IMPLICATIONS FOR PRACTICE: Repeated symptom assessment, including experienced distress, is central for reducing overall symptom burden and supporting recovery after allo-HSCT.