Dataset Information

Do Informal Care Recipients Internalise Carer Burden? Examining the Impact of Informal Care Receipt on Health Behaviours.

ABSTRACT:

Background

Providing informal care has a negative effect on the caregiver's health and well-being, but little is known about how individuals respond to receiving informal care. Care recipients may improve their health behaviours to minimise the onerousness of caregiving and the stress faced by their carer from seeing a loved one in ill-health.

Objective

We aimed to examine whether informal care recipients internalise the potential for carer spillovers through changes in health behaviours.

Methods

We used data from 3250 older adults with care needs who took part in the UK Household Longitudinal Study between 2017 and 2019. We examined the response to informal care receipt in terms of the probability of engaging in four health behaviours: healthy diet, physical activity, smoking and alcohol consumption. We estimated average treatment effects using regression adjustment with inverse probability treatment weights, comparing individuals that received informal care to those receiving either formal or no care.

Results

We found that informal care receipt increased the probability of refraining from negative health behaviours (smoking and alcohol consumption) but reduced the probability of engaging in positive health behaviours (eating fruits and/or vegetables and physical activity).

Conclusions

The asymmetric effects detected suggest that the underlying mechanisms are different, and care recipients may be engaging in risk and effort compensation between negative and positive health behaviours. Failure to account for the behavioural responses from informal care recipients may lead to under-estimation or over-estimation of the extent of caregiving burden and the effectiveness of interventions impacting informal carers.

SUBMITTER: Elliott J

PROVIDER: S-EPMC10864417 | biostudies-literature | 2024 Mar

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Do Informal Care Recipients Internalise Carer Burden? Examining the Impact of Informal Care Receipt on Health Behaviours.

Elliott Jack J Francetic Igor I Meacock Rachel R Sutton Matt M

Applied health economics and health policy 20240110 2

<h4>Background</h4>Providing informal care has a negative effect on the caregiver's health and well-being, but little is known about how individuals respond to receiving informal care. Care recipients may improve their health behaviours to minimise the onerousness of caregiving and the stress faced by their carer from seeing a loved one in ill-health.<h4>Objective</h4>We aimed to examine whether informal care recipients internalise the potential for carer spillovers through changes in health beh ...[more]

PMID: 38198104

Similar Datasets

Project description:ObjectivesUnderstanding factors affecting informal carers' well-being is important to support healthy ageing at home. Sleep disturbances of care recipients are increasingly recognised as affecting the well-being of both parties. This research assesses the relationship between indicators of care recipients' sleep status and carer distress, as well as carer distress with subsequent admission to residential aged care, using prospectively collected Home Care International Residential Assessment Instrument (interRAI-HC) assessment data.ParticipantsData were sourced from 127 832 assessments conducted between 2012 and 2019 for people aged 55 years or older who had support from at least one informal carer. The majority (59.4%) of care recipients were female and 59.1% were defined as having cognitive impairment or dementia (CIoD).SettingNew Zealand.DesignLogistic regression modelling was used to assess the independent relationships between indicators of care recipients' sleep status (difficulty sleeping and fatigue) and primary caregivers' distress (feeling overwhelmed or distressed). Kaplan meier curves illustrated the subsequent relationship between caregiver distress and care recipients' transitions to aged residential care.ResultsCare recipients' sleeping difficulty (32.4%) and moderate-severe fatigue (46.6%) were independently associated with caregiver distress after controlling for key demographic and health factors included in the assessment. Distress was reported by 39.9% of informal caregivers and was three times more likely among those supporting someone with a CIoD. Caregiver distress was significantly associated with care recipients' earlier admission into aged residential care.ConclusionsIndicators of sleep disturbance among care recipients are associated with increased likelihood of carer distress. This has implications for managing the overall home-care situation and long-term care needs, as well as the well-being of both parties. Findings will inform research and development of measures, services and interventions to improve the sleep and waking health of older people, including those with CIoD and family caregivers.

Project description:IntroductionFamily carers are cornerstones in the care of older people living with dementia. Family carers report extensive carer burden, reduced health-related quality of life (HRQoL), and extensive time spent on informal care (Time). Health literacy (HL) is a concept associated with people's ability to access health services, and navigate the healthcare system. This study's aim was to investigate HL among family carers, and investigate the associations between HL and carer burden, HRQoL, and Time spent on informal care.MethodWe designed a self-administered survey comprising validated instruments, including the Health Literacy Scale (HLS-N-Q12) to measure HL, Relative Stress Scale (RSS) to measure carer burden, the EQ-5D-5L instrument to measure HRQoL, and some modified questions from the Resource Utilization in Dementia (RUD) questionnaire to measure time spent on informal care (Time). Descriptive analysis in addition to bivariate and multiple linear regressions were undertaken. In multiple linear regression analysis, we used HL as the independent variable to predict the outcomes (carer burden, HRQoL, Time). Analyses were adjusted for the effects of explanatory independent variables: age, gender, education levels, urban residency, having worked as health personnel, caring for someone with severe/mild dementia, and being born abroad.FindingsIn a non-probability sample of 188 family carers from across Norway, most of them female and over the age of 60, we found high levels of HL. In the bivariate analysis, carer burden and HRQoL (EQvalue) showed significant associations with HL. In the multiple regression analyses, HL was statistically significantly associated with carer burden (B = -0.18 CI:-0.33,-0.02 p = 0.02), HRQoL (EQvalue: B = 0.003 with 95% CI: 0.001, 0.006 p = 0.04), and Time (B = -0.03 with 95% CI: -0.06, 0.000, p = 0.046), after adjusting for the effect of independent variables.ConclusionThis is one of the first studies to investigate the associations between HL and different outcomes for family carers of older people living with dementia. Additional research into the associations identified here is needed to further develop our understanding of how to support family carers in their roles. Targeted support that increases family carers' HL may have potential to enhance their ability to provide sustainable care over time.

Project description:Background: Smoking, unhealthy alcohol consumption, poor diet and physical inactivity are leading risk factors for morbidity and mortality, and contribute substantially to overall healthcare costs. The availability of health surveys linked to health care provides population-based estimates of direct healthcare costs. We estimated health behaviour and socioeconomic-attribute healthcare costs, and how these have changed during a period when government policies have aimed to reduce their burden. Methods: The Ontario samples of the Canadian Community Health Surveys (conducted in 2003, 2005, and 2007-2008) were linked at the individual level to all records of health care use of publicly funded healthcare. Generalized linear models were estimated with a negative binomial distribution to ascertain the relationship of health behaviours and socioeconomic risk factors on health care costs. The multivariable cost model was applied to unlinked, Ontario CCHS samples for each year from 2004 to 2013 to examine the evolution of health behaviour and socioeconomic-attributable direct health care expenditures over a 10-year period. Results: We included 80,749 respondents, aged 25 years and older, and 312,952 person-years of follow-up. The cost model was applied to 200,324 respondents aged 25 years and older (CCHS 2004 to 2013). During the 10-year period from 2004 to 2013, smoking, unhealthy alcohol consumption, poor diet and physical inactivity attributed to 22% of Ontario's direct health care costs. Ontarians in the most disadvantaged socioeconomic position contributed to 15% of the province's direct health care costs. Combined, these health behaviour and socioeconomic risk factors were associated with 34% ($134 billion) of direct health care costs (2004 to 2013). Over this time period, we estimated a 1.9% reduction in health care expenditure ($5.0 billion) attributable to improvements in some health behaviours, most importantly reduced rates of smoking. Conclusions: Adverse health behaviours and socioeconomic position cause a large direct health care system cost burden.

Project description:BackgroundAt the end of life, formal care costs are high. Informal care (IC) costs, and their effects on outcomes, are not known. This study aimed to determine the IC costs for older adults in the last 3 months of life, and their relationships with outcomes, adjusting for care quality.MethodsMortality follow-back postal survey.SettingPalliative care services in England (London), Ireland (Dublin) and the USA (New York, San Francisco).ParticipantsInformal carers (ICrs) of decedents who had received palliative care.DataICrs reported hours and activities, care quality, positive aspects and burdens of caregiving, and completed the Texas Revised Inventory of Grief (TRIG).AnalysisAll costs (formal, informal) were calculated by multiplying reported hours of activities by country-specific costs for that activity. IC costs used country-specific shadow prices, e.g. average hourly wages and unit costs for nursing care. Multivariable logistic regression analysis explored the association of potential explanatory variables, including IC costs and care quality, on three outcomes: positive aspects and burdens of caregiving, and subsequent grief.ResultsWe received 767 completed surveys, 245 from London, 282 Dublin, 131 New York and 109 San Francisco. Most respondents were women (70%); average age was 60 years. On average, patients received 66-76 h per week from ICrs for 'being on call', 52-55 h for ICrs being with them, 19-21 h for personal care, 17-21 h for household tasks, 15-18 h for medical procedures and 7-10 h for appointments. Mean (SD) IC costs were as follows: USA $32,468 (28,578), England $36,170 (31,104) and Ireland $43,760 (36,930). IC costs accounted for 58% of total (formal plus informal) costs. Higher IC costs were associated with less grief and more positive perspectives of caregiving. Poor home care was associated with greater caregiver burden.ConclusionsCosts to informal carers are larger than those to formal care services for people in the last three months of life. If well supported ICrs can play a role in providing care, and this can be done without detriment to them, providing that they are helped. Improving community palliative care and informal carer support should be a focus for future investment.

Dataset Information

Do Informal Care Recipients Internalise Carer Burden? Examining the Impact of Informal Care Receipt on Health Behaviours.

Background

Objective

Methods

Results

Conclusions

Publications

Do Informal Care Recipients Internalise Carer Burden? Examining the Impact of Informal Care Receipt on Health Behaviours.

Similar Datasets

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