Long‐term cost of spouses’ informal support for dependent midlife stroke survivors

Persson, Josefine; Levin, Lars‐Åke; Holmegaard, Lukas; Redfors, Petra; Svensson, Mikael; Jood, Katarina; Jern, Christina; Blomstrand, Christian; Forsberg-Wärleby, Gunilla

doi:10.1002/brb3.716

Cited by 14 publications

(14 citation statements)

References 31 publications

(41 reference statements)

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“…Others have estimated that caregiver assistance might amount to, on average, about 9 to 17 h per week in the first year after stroke. 4,21 In a seven-year follow-up study on 33 caregivers by Persson et al, 22 the time spent providing support to dependent survivors of stroke was subdivided into two components: practical support (35 h per week) and being available (66.5 h per week), suggesting a substantial commitment in addition to the time spent actively providing assistance. We did not use absolute measures of time consumption.…”

Section: Our Results In Relation To Previous Researchmentioning

confidence: 99%

Informal caregivers in stroke: Life impact, support, and psychological well-being—A Swedish Stroke Register (Riksstroke) study

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Ullberg

2019

International Journal of Stroke

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Background Informal caregivers provide a large amount of day-to-day assistance and are crucial for the ability of survivors to recover and adapt to life after stroke. Aim The development of caregiver support programs is limited by lack of large long-term follow-up studies. We present a comprehensive study of Swedish stroke caregivers' life situation in relation to degree of functional dependency of the survivor. Patients and methods In 2016, the Swedish Stroke Register, Riksstroke, conducted a long-term follow-up survey on caregivers to patients with stroke three and five years earlier. Items on psychological well-being were adapted from the 36-item short-form health survey and poor outcome was defined using the 36-item short-form health survey reference material. Survivor degree of dependency was indicated by the caregiver as independent, partially dependent, or completely dependent. Results A total of 5063 community dwelling dyads were included: 56.5% of survivors were independent, 33.4% partially dependent, and 10.1% completely dependent. Caregiver life impact, need of support, and proportion of poor psychological well-being increased incrementally with survivor degree of dependency. In the completely dependent group where 41.1% of survivors could not be left unattended for more than 1 h, 23.7% of caregivers expressed unmet need of caregiver support; 51.4% reported poor psychological well-being compared to 19.3% in the independent group. Conclusion The caregiver situation varies greatly with degree of survivor dependency which makes generalizations of caregiver needs difficult. Our results emphasize the need for integrating support aimed specifically at caregivers to survivors of stroke with a large degree of dependency.

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Section: Our Results In Relation To Previous Researchmentioning

confidence: 99%

Informal caregivers in stroke: Life impact, support, and psychological well-being—A Swedish Stroke Register (Riksstroke) study

Sennfält

Ullberg

2019

International Journal of Stroke

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“…1 ). The recruited participants and drop-out in the time-diary study have been presented in detail elsewhere [ 17 ].…”

Section: Methodsmentioning

confidence: 99%

“…Furthermore, the quantity of informal support has also been shown to be associated with the stroke survivors’ functional ability [ 14 ], motor and cognitive function [ 15 ] and their stroke-related health problems [ 16 ]. We have recently shown that the spousal support and cost [ 17 ] and QALY-weight [ 18 ] were associated with measures of global function of the stroke survivors. However, it remains to be shown whether there is an association between the stroke survivors’ QALY-weights and the informal support provided by their spouses.…”

Section: Introductionmentioning

confidence: 99%

Stroke survivors’ long-term QALY-weights in relation to their spouses’ QALY-weights and informal support: a cross-sectional study

Persson

Levin

Holmegaard

et al. 2017

Health Qual Life Outcomes

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BackgroundHealthcare interventions that have positive effects on the stroke survivors’ health-related quality of life (HRQoL) and quality-adjusted life-years (QALYs) might also have positive effects for their spouses in terms of improved HRQoL and/or reduced spousal informal support. However, knowledge about stroke survivors’ HRQoL and QALY and the consequences for their spouses’ HRQoL and QALY is limited. Therefore, the aim of this study was to describe the HRQoL and QALY-weights in dyads of stroke survivors in comparison with dyads of healthy controls, and to study the relationship between the stroke survivors’ QALY-weights and consequences for spouses in terms of QALY-weight and annual cost of informal support, using a long-term perspective.MethodsData on stroke survivors, controls, and spouses were collected from the seven-year follow-up of the Sahlgrenska Academy Study on Ischemic Stroke (SAHLSIS). HRQoL was assessed by the SF-36, and the preference-based health state values were assessed with the SF-6D. The magnitude of the support was assessed with a study specific time-diary. An ordinary least squares (OLS) regression was used to estimate the association between stroke survivors’ and spouses’ QALY-weights. A two-part econometric model was used to estimate the association between stroke survivors’ QALY-weights and the time spent and cost of spouses’ informal support.ResultsCohabitant dyads of 248 stroke survivors’ aged <70 at stroke onset and 245 controls were included in the study. Stroke survivors had lower HRQoL in the SF-36 domains physical functioning, physical role, general health, vitality (P < 0.001), and social functioning (P = 0.005) in comparison with their cohabitant spouses. There was no significant difference in HRQoL for the dyads of controls. The results from the regression analyses showed that lower QALY-weights of the stroke survivors were associated with lower QALY-weights of their spouses and increased annual cost of spousal informal support.ConclusionOur results show that the QALY-weights for stroke survivors had consequences for their spouses in terms of annual cost of spousal informal support and QALY-weights. Hence, economic evaluation of interventions that improve the HRQoL of the stroke survivors but ignore the consequences for their spouses may underestimate the value of the intervention.

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“…The estimated prevalence of disability after stroke concerns about 40% of the stroke survivors in Sweden (3), which are often long-lasting in the middle-aged group (4). Thus, spouses' often provides long-term support which covers a wide range of activities (5) and can be perceived to bring positive aspects in life (6). However, the informal support can also be demanding and have a negative impact on the spouses wellbeing, leisure activities, social functioning (7,8), and health-related quality of life (9).…”

Section: Introductionmentioning

confidence: 99%

Employment transitions for spouses of stroke survivors: Evidence from Swedish national registries

Persson

Hensing

2020

Preprint

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Background: The sudden occurrence of stroke often leads to impaired physical, emotional, and cognitive abilities. Many stroke survivors therefore require support from their family members. However, little is known about the effects of a stroke event on the spouses’ employment transition probabilities. Thus, the aim of this study was to investigate whether a first ever stroke has an effect on employment transition probabilities for employed and unemployed spouses. The aim was also to analyze whether heterogeneity with respect to age, gender, education and comorbidities influence the size of the effect. Method: Data for this population-based cohort study were extracted from Swedish national registries from 2005 to 2016. The national sample consisted of 1,818 spouses of first ever stroke survivors during 2010 and 2011, and 7,399 matched controls that were employed or unemployed during five years prior stroke onset. Effects of stroke on spousal employment transitions were analyzed using linear regression, stratified by employment status prior to stroke onset.Results: Employed spouses prior stroke onset reduced their employment by -1.3 percentage points (95% CI: -2.4, -0.2). The data also indicated that employed spouses with lower age, comorbid conditions, and low educational attainment may be at even greater risk of transitioning to unemployment. On the other hand, stroke events appear to have limited impact on spouses that were unemployed prior to stroke onset. Conclusion: The risk of transitioning to unemployment appears to increase after stroke onset for spouses of stroke survivors, and disadvantaged groups may be at even greater risk. Thus, it is important for policy-makers to implement interventions to ensure that these groups of spouses have the possibilities to combine their caregiving role and remaining in the labor market.

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Long‐term cost of spouses’ informal support for dependent midlife stroke survivors

Cited by 14 publications

References 31 publications

Informal caregivers in stroke: Life impact, support, and psychological well-being—A Swedish Stroke Register (Riksstroke) study

Informal caregivers in stroke: Life impact, support, and psychological well-being—A Swedish Stroke Register (Riksstroke) study

Stroke survivors’ long-term QALY-weights in relation to their spouses’ QALY-weights and informal support: a cross-sectional study

Employment transitions for spouses of stroke survivors: Evidence from Swedish national registries

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