Family caregivers’ support needs during allo-HSCT—a longitudinal study

Kisch, Annika; Bergkvist, Karin; Alvariza, Anette; Årestedt, Kristofer; Winterling, Jeanette

doi:10.1007/s00520-020-05853-8

Cited by 11 publications

(9 citation statements)

References 47 publications

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“…Family caregivers in the present study reported most need of additional support with Knowing what to expect in the future and Having time for yourself in the day . This is in line with the results from a study using the CSNAT among Swedish family caregivers of patients going through allogenic stemcell transplantion [ 35 ] and family caregivers in United Kingdom [ 30 ], Australia [ 36 ] and China [ 37 ]. Lowest QoL was reported in the QOLLTI-F domains related to the Patient condition, and Family caregivers’ own state.…”

Section: Discussionsupporting

confidence: 86%

Higher levels of unmet support needs in spouses are associated with poorer quality of life – a descriptive cross-sectional study in the context of palliative home care

et al. 2021

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Background Family caregivers often report having unmet support needs when caring for someone with life-threatening illness. They are at risk for psychological distress, adverse physical symptoms and negatively affected quality of life. This study aims to explore associations between family caregivers’ support needs and quality of life when caring for a spouse receiving specialized palliative home care. Methods A descriptive cross-sectional design was used: 114 family caregivers completed the Carer Support Needs Assessment Tool (CSNAT) and the Quality of Life in Life-Threatening Illness – Family caregiver version (QOLLTI-F) and 43 of them also answered one open-ended question on thoughts about their situation. Descriptive statistics, multiple linear regression analyses, and qualitative content analysis, were used for analyses. Results Higher levels of unmet support needs were significantly associated with poorer quality of life. All CSNAT support domains were significantly associated with one or more quality of life domains in QOLLTI-F, with the exception of the QoL domain related to distress about the patient condition. However, family caregivers described in the open-ended question that their life was disrupted by the patient’s life-threatening illness and its consequences. Family caregivers reported most the need of more support concerning knowing what to expect in the future, which they also described as worries and concerns about what the illness would mean for them and the patient further on. Lowest QoL was reported in relation to the patient’s condition, and the family caregiver’s own physical and emotional health. Conclusion With a deeper understanding of the complexities of supporting family caregivers in palliative care, healthcare professionals might help to increase family caregivers’ QoL by revealing their problems and concerns. Thus, tailored support is needed.

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Section: Discussionsupporting

confidence: 86%

Higher levels of unmet support needs in spouses are associated with poorer quality of life – a descriptive cross-sectional study in the context of palliative home care

et al. 2021

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“…Family caregivers in allo-HSCT experience a high sense of uncertainty prior to transplantation due to, among other things, the lack of information about the patient's disease and the side effects of treatment (Bergkvist et al, 2020). The unique life situation of family caregivers in allo-HSCT comprising of high responsibility, a great sense of uncertainty about the future and long-term worries, is also explained by the patient's high risk of relapse and that her/his health status can change rapidly, which causes concern about what will happen next (Kuba et al, 2017; Bergkvist et al, 2018; Kisch et al, 2020). If family caregivers are prepared for the tasks and demands of the caregiving role prior to allo-HSCT, their situation during the distressing time of the allo-HSCT trajectory might be easier.…”

Section: Introductionmentioning

confidence: 99%

Preparedness for family caregiving prior to allogeneic hematopoietic stem cell transplantation

et al. 2021

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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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“…It is well recognized that the presence of floor effects may lower the tool’s responsiveness to change and may fail to capture the full range of support needs [ 37 , 38 ]. Limited studies have reported that the vast majority of CSNAT items did not change over time [ 13 , 39 ]. Longitudinal tobit regression model can be considered to account for the presented floor effects in future studies [ 40 ].…”

Section: Discussionmentioning

confidence: 99%

Reliability, validity and acceptability of the traditional Chinese version of the carer support needs assessment tool in Hong Kong palliative care settings

Cheng

Leung

et al. 2021

BMC Palliat Care

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Background Among the few existing needs assessment tools for family carers, the 14-item Carer Support Needs Assessment Tool (CSNAT) is the only brief and holistic needs screening tool designed for everyday use in palliative care practices. The aim of this study was to evaluate the reliability, validity, and acceptability of the traditional Chinese version of the CSNAT in palliative care settings in Hong Kong. Methods This adopted a cross-sectional and correlation design with repeated measures. The participants were 125 family carers of palliative cancer patients and 10 healthcare providers (HCPs) that were recruited from two local hospitals. The evaluation of psychometric properties included the following: (1) content validity through HCPs including frontline physicians, nurses, social workers, and clinical psychologists; (2) construct validity between the CSNAT items and those of the validated tools that measured caregiver burden, social support, and caregiving self-efficacy; and (3) one-week test-retest reliability in a sub-sample of 81 caregivers. The acceptability of the tool was assessed by the carers using several closed-ended questions. Results The content validity index of the CSNAT at the scale level was 0.98. Each item of the CSNAT was significantly and moderately correlated with caregiver burden (Spearman’s r = 0.24 to 0.50) and caregiving self-efficacy (r = − 0.21 to − 0.52), but not for social support. All CSNAT items had fair to moderate test-retest reliability (weighted kappa = 0.21 to 0.48), with the exception of two items “managing your relatives’ symptoms, including giving medicines” and “having time for yourself in the day”. Regarding the acceptability of the CSNAT, almost all HCPs were willing to use the CSNAT for carer assessment and support. 89.6% of the carers demonstrated a comprehensibility of the CSNAT tool and 92.9% felt comfortable answering the questions. Around 90% of the carers agreed to use the tool for screening, discussing needs, and making referrals. Conclusion The traditional Chinese version of the CSNAT is a tool with high validity and acceptability and adequate reliability that measures family carers’ support needs, which should be considered for wide application in local palliative care practices.

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Family caregivers’ support needs during allo-HSCT—a longitudinal study

Cited by 11 publications

References 47 publications

Higher levels of unmet support needs in spouses are associated with poorer quality of life – a descriptive cross-sectional study in the context of palliative home care

Higher levels of unmet support needs in spouses are associated with poorer quality of life – a descriptive cross-sectional study in the context of palliative home care

Preparedness for family caregiving prior to allogeneic hematopoietic stem cell transplantation

Reliability, validity and acceptability of the traditional Chinese version of the carer support needs assessment tool in Hong Kong palliative care settings

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