| 1. |
- Bergkvist, Karin, et al.
(författare)
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Support in the context of allogeneic hematopoietic stem cell transplantation : The perspectives of family caregivers
- 2020
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Ingår i: European Journal of Oncology Nursing. - : Elsevier BV. - 1462-3889 .- 1532-2122. ; 46
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 2. |
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| 3. |
- Kisch, Annika M., et al.
(författare)
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A person-centred intervention remotely targeting family caregivers' support needs in the context of allogeneic hematopoietic stem cell transplantation : A feasibility study
- 2022
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Ingår i: Supportive Care in Cancer. - : Springer Science and Business Media LLC. - 0941-4355 .- 1433-7339. ; 30:11, s. 9039-9047
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 4. |
- Kisch, Annika M., et al.
(författare)
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Family caregivers' support needs during allo-HSCT-a longitudinal study
- 2021
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Ingår i: Supportive Care in Cancer. - : Springer. - 0941-4355 .- 1433-7339. ; 29, s. 3347-3356
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 5. |
- Winterling, Jeanette, et al.
(författare)
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Preparedness for family caregiving prior to allogeneic hematopoietic stem cell transplantation
- 2022
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Ingår i: Palliative & Supportive Care. - : Cambridge University Press (CUP). - 1478-9515 .- 1478-9523. ; 20:4, s. 519-526
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 6. |
- Winterling, Jeanette, et al.
(författare)
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Preparedness for family caregiving prior to allogeneic hematopoietic stem cell transplantation
- 2022
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Ingår i: Palliative & Supportive Care. - : Cambridge University Press. - 1478-9515 .- 1478-9523. ; 20:4, s. 519-526
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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