Carers Research Articles

Physician and informal care use explained by the Pediatric Quality of Life Inventory (PedsQL) in children with suspected genetic disorders.

To examine associations between Pediatric Quality of Life Inventory (PedsQL) 4.0 Generic Core Scales and PedsQL Infant Scales with formal health care resource utilization (HCRU) and informal caregiver burden. We studied a pediatric cohort of 837 patients (median age: 8.4 years) with suspected genetic disorders enrolled January 2019 through July 2021 in the NYCKidSeq program for diagnostic sequencing. Using linked ~ nine-month longitudinal survey and physician claims data collected through May 2022, we modeled the association between baseline PedsQL scores and post-baseline HCRU (median follow-up: 21.1 months) and informal care. We also assessed the longitudinal change in PedsQL scores with physician services using linear mixed-effects models. Lower PedsQL total and physical health scores were independently associated with increases in 18-month physician services, encounters, and weekly informal care. Comparing low vs. median total scores, increases were 10.6 services (95% CI: 1.0-24.6), 3.3 encounters (95% CI: 0.5-6.8), and $668 (95% CI: $350-965), respectively. For the psychosocial domain, higher scores were associated with decreased informal care. Based on adjusted linear mixed-effects modeling, every additional ten physician services was associated with diminished improvement in longitudinal PedsQL total score trajectories by 1.1 point (95% confidence interval: 0.6-1.6) on average. Similar trends were observed in the physical and psychosocial domains. PedsQL scores were independently associated with higher utilization of physician services and informal care. Moreover, longitudinal trajectories of PedsQL scores became less favorable with increased physician services. Adding PedsQL survey instruments to conventional measures for improved risk stratification should be evaluated in further research.

Childhood adversities and caregiving for older parents: Building capacity for a caring society.

This study investigates the relationships between childhood adversities and the provision of informal care for older parents in later life in China. The data came from four waves of the China Health and Retirement Longitudinal Study (CHARLS, N = 20,047). Using multilevel logistic regression models, we examined the relationships between adverse experiences in childhood and both the propensity and intensity of caregiving for older parents. Drawing on the regression results, we then estimated the total number of caregivers for older parents in China. Experiencing one additional childhood adversity was associated with a decrease of 8% in the odds of providing informal care (p<0.001). The association between childhood adversity and caregiving remained significant after socio-demographic factors and later life outcomes were controlled for. We estimated that 58.3 million middle-aged adults in China were providing care for parents in 2020. Had people experienced one fewer adversity in their childhood, there would have been 2.2 million more caregivers in 2020. Had they experienced two fewer adversities, there would have been 3.4 million more caregivers. The factors associated with informal caregiving can be traced back to early life experiences. To address the shortage of informal care supply, it is crucial to foster a caring culture from the very beginning of human development.

A fluctuating intensity of care: A qualitative study on the experiences of informal caregivers of patients with critical limb-threateningischemia.

Informal caregivers play a significant role in providing care for older, often vulnerable, patients, and supporting them as they live with chronic diseases. Due to the rising prevalence of older vascular patients and their use of healthcare, the role of their informal caregivers will become more important. However, little is known about the experiences of informal caregivers of patients with critical limb-threatening ischemia and the impact of informal care on different aspects of these caregivers' lives. In addition, literature does not describe the burden this role brings with it, or lack thereof. Therefore a qualitative study using a phenomenological approach, specifically interpretive phenomenological analysis, was used to gain insight into the experiences of the primary informal caregivers of patients with chronic limb-threatening ischemia. Data were collected via semi-structured interviews and focus groups discussions. Fifteen primary informal caregivers of patients with critical limb-threatening ischemia under the care of the vascular surgeon at a tertiary teaching hospital in the Netherlands were included. Data analysis yielded three themes: the perceived identity of this group of caregivers; the varying intensity of informal care; and the collaboration between informal carers, their care recipients and the professional care provider within the vascular surgery department. In contrast to carers of other chronic diseases, the shifting intensity of care that informal caregivers of critical limb-threatening ischemia patients experience seems to prevent long-term overload. Adapting to that fluctuating situation requires flexibility from healthcare providers within the vascular surgery department. In addition, professionals need to involve informal caregivers in the patient's decision-making process and recognize their role in that process.

Mental Health Carers’ Support Experiences in Australia

Informal mental health carers play a crucial role in supporting individuals with depression and anxiety. However, there is a lack of knowledge on how to effectively support these carers and promote their well-being. This mixed-method study aimed to explore the support needs of carers of a person with depressive or anxiety symptoms, living in Australia. Sixty-seven carers (female 76 %, median age 48) completed an online survey, and 22 completed semi-structured interviews about their support experiences. Over half of the survey respondents reported high levels of psychological distress on the Kessler Psychological Distress Scale (K10), and 63% reported understanding and adjusting to the caregiving role as the most needed areas of support, as identified on the Caregiver Perspective Questionnaire (CPQ). Through thematic analysis of the interviews, four key themes emerged describing carers’ support experiences and needs: connecting with formal services, responding to the care-recipient, connecting socially, and caring for the self. The analysis also found that time constraints and stigma can be significant support barriers for these carers. This is the first time that a study has investigated the support experiences and needs of carers of a person with depressive or anxiety symptoms, living in Australia. The findings contribute to current literature on mental health carers and offer novel and tangible insights into future research and support opportunities.

The extended impact of co-designed personalised aids for people living with chronic conditions: an exploratory study in a healthcare setting

Assistive technology has great potential to help individuals living with chronic health conditions, however devices often fail to align with the unique requirements of users. These results in device abandonment and missed opportunities to benefit people. This exploratory study aims to evaluate the short and longer-term satisfaction, psychological benefit, use and resources involved in co-designed customised assistive devices within a current healthcare service. Individuals with chronic health conditions identified daily living challenges. Eleven individuals completed the trial and were involved throughout the design process. Outcome measures evaluated the impact of the devices provided, healthcare utilisation, help required, and resources used. Nineteen custom assistive devices were produced for twenty-four challenges in daily living identified. At 3-months, eighteen devices were still being used. Daily challenges had become easier for individuals to complete and required less help from informal carers. Individuals were satisfied with the devices and service provided. Improvements in competence, adaptability and self-esteem were sustained long-term. The average clinician’s time required to produce a device was 5 h 55 min, with an average cost of £203.79. People with chronic conditions were able to benefit from the co-design process resulting in satisfaction and long-term utilisation of the device, and positive psycho-social benefits. The costs associated with embedding this approach in a healthcare service were calculated. Scaling up the co-design process reduced the associated costs per device compared to previous work. Further work is required to evaluate co-designing across larger samples and explore opportunities to further improve the cost-efficiency.

Virtual reality-based training may improve visual memory and some aspects of sustained attention among healthy older adults – preliminary results of a randomized controlled study

Background/AimsOlder age and cognitive inactivity have been associated with cognitive impairment, which in turn is linked to economic and societal burdens due to the high costs of care, especially for care homes and informal care. Emerging non-pharmacological interventions using new technologies, such as virtual reality (VR) delivered on a head-mounted display (HMD), might offer an alternative to maintain or improve cognition. The study aimed to evaluate the efficacy and safety of a VR-based Digital Therapeutics application for improving cognitive functions among healthy older adults.MethodsSeventy-two healthy seniors (experimental group N = 35, control group N = 37), aged 65–85 years, were recruited by the Medical University of Lodz (Poland). Participants were randomly allocated to the experimental group (a VR-based cognitive training which consists of a warm-up module and three tasks, including one-back and dual-N-back) or to the control group (a regular VR headset app only showing nature videos). The exercises are performed in different 360-degree natural environments while listening to a preferred music genre and delivered on a head-mounted display (HMD). The 12-week intervention of 12 min was delivered at least three times per week (36 sessions). Compliance and performance were followed through a web-based application. Primary outcomes included attention and working memory (CNS-Vital Signs computerized cognitive battery). Secondary outcomes comprised other cognitive domains. Mixed linear models were constructed to elucidate the difference in pre- and post-intervention measures between the experimental and control groups.ResultsThe users performed, on average, 39.8 sessions (range 1–100), and 60% performed more than 36 sessions. The experimental group achieved higher scores in the visual memory module (B = 7.767, p = 0.011) and in the one-back continuous performance test (in terms of correct responses: B = 2.057, p = 0.003 and omission errors: B = -1.950, p = 0.007) than the control group in the post-test assessment. The results were independent of participants’ sex, age, and years of education. The differences in CNS Vital Signs’ global score, working memory, executive function, reaction time, processing speed, simple and complex attention, verbal memory, cognitive flexibility, motor speed, and psychomotor speed were not statistically significant.ConclusionsVR-based cognitive training may prove to be a valuable, efficacious, and well-received tool in terms of improving visual memory and some aspect of sustainability of attention among healthy older adults. This is a preliminary analysis based on part of the obtained results to that point. Final conclusions will be drawn after the analysis of the target sample size.Trial registrationClinicaltrials.gov ID NCT05369897.

Validating interRAI Chinese self-reported carer needs (SCaN) assessment and predicting caregiving distress among informal Chinese caregivers of older adults

BackgroundThis study aims to (1) determine the reliability and validity of the interRAI Chinese Self-reported Carer Needs (SCaN) assessment among informal Chinese caregivers of older adults, (2) identify predictors of caregiving distress in Asian regions with long-standing Confucian values of filial piety and family responsibility.MethodsThis cross-sectional study recruited 531 informal Chinese caregivers of older adults in Hong Kong, Shanghai, Taiwan, and Singapore. The scale reliability was examined using Cronbach’s alphas (α) and McDonald’s omega coefficient (ω). The concurrent validity and discriminant validity were assessed using Spearman rank correlations (rho). To examine the predictors of caregiving distress among informal caregivers of older adults, we employed hierarchical linear regression analyses informed by the Model of Carer Stress and Burden and categorized the predictors into six domains.ResultsResults revealed good internal consistency reliability (α = 0.83–0.96) and concurrent validity (rho = 0.45–0.74) of the interRAI Chinese SCaN assessment. Hierarchical linear regression analysis revealed that entering the background factors, primary stressors, secondary stressors, appraisal, and exacerbating factors all significantly enhanced the model’s predictability, indicating that the source of caregiving distress is multidimensional. In the full model, caregivers with longer informal care time, lack of support from family and friends, have unmet needs, experience role overload, have sleep problems, and low IADL functioning are at a higher risk of caregiving distress.ConclusionsThe interRAI Chinese SCaN Assessment was found to be a reliable and valid tool among the Chinese informal caregivers of older adults. It would be useful for determining family caregivers’ strengths, needs, and challenges, and tailoring interventions that address the potentially modifiable factors associated with caregiving distress and maximize support. Healthcare providers working in home and community settings should be aware of the early identification of caregiving distress and routine assessment of their needs and empower them to continue taking care of their needs and providing adequate care to the care recipient.

Does income matter for the policy effect of public long-term care insurance on informal care use in China? A quasi-experimental study.

Since 2016, the Chinese government has been piloting a public long-term care insurance (LTCI) scheme. This study examined whether the LTCI scheme reduced the use of informal care and how this has varied across income groups. We used data from the 2011, 2014, and 2018 waves of Chinese Longitudinal Healthy Longevity Survey, focusing on community-dwelling older adults aged 65 years and older. We used staggered difference-in-differences analyses with propensity score matching to examine the effects of the policy. The LTCI scheme reduced the probability and intensity of informal care use by 5.7% (p < .05) and 17.4% (p < .05), respectively. The policy impact was limited to older people in the middle-income group, reducing the probability and intensity of informal care use by 15.6% (p < .001) and 43.1% (p < .05), respectively. We did not find a statistically significant policy effect for older adults with high or low incomes. The LTCI scheme had different effects on reducing the informal care burden for family caregivers by income level. We suggest that the scheme should entitle people with low incomes to a preferential co-payment rate, thereby enhancing their access to formal care.

The Effect of Informal Caregiving on Depression: An Asymmetric Panel Fixed-Effects Analysis of In-Home and Out-Of-Home Caregivers Across Europe

ABSTRACT Previous research has shown that providing intensive informal care can have a negative effect on an individual’s mental health. However, few studies have been able to draw a precise comparison between the experiences of in-home and out-of-home caregivers. This study used data from 16 countries collected from 2011–2019 as part of the Survey of Health, Ageing and Retirement in Europe (SHARE) to conduct asymmetric panel fixed-effects models that examined within-person variation in depression scores after a respondent started providing daily or almost daily personal care either inside or outside of their home. The results substantiated previous findings that in-home caregivers experience more pronounced increases to their reported depressive symptoms after starting to provide daily personal care than do out-of-home caregivers. In addition, in-home caregivers in countries with greater governmental responsibility for long-term care provision (The Northern and Central Clusters) reported fewer increases to their depressive symptoms after starting to provide care than caregivers in countries where long-term care responsibility predominantly rests on families (The Southern and Eastern Cluster). Further, Northern Cluster countries most successfully shrank the pool of out-of-home care providers. Together, these findings underscore the context-specific nature of caregiver wellbeing.

Economic impact of informal caring for a person with arthritis in Australia from 2015 to 2030: a microsimulation approach using national survey data

ObjectivesTo estimate the economic burden of informal caregivers not in the labour force (NILF) due to caring for a person with arthritis in Australia, with projections of these costs from...

Evaluation of ChatGPT’s responses to information needs and information seeking of dementia patients

Many people in the advanced stages of dementia require full-time caregivers, most of whom are family members who provide informal (non-specialized) care. It is important to provide these caregivers with high-quality information to help them understand and manage the symptoms and behaviors of dementia patients. This study aims to evaluate ChatGPT, a chatbot built using the Generative Pre-trained Transformer (GPT) large language model, in responding to information needs and information seeking of such informal caregivers. We identified the information needs of dementia patients based on the relevant literature (22 articles were selected from 2442 retrieved articles). From this analysis, we created a list of 31 items that describe these information needs, and used them to formulate 118 relevant questions. We then asked these questions to ChatGPT and investigated its responses. In the next phase, we asked 15 informal and 15 formal dementia-patient caregivers to analyze and evaluate these ChatGPT responses, using both quantitative (questionnaire) and qualitative (interview) approaches. In the interviews conducted, informal caregivers were more positive towards the use of ChatGPT to obtain non-specialized information about dementia compared to formal caregivers. However, ChatGPT struggled to provide satisfactory responses to more specialized (clinical) inquiries. In the questionnaire study, informal caregivers gave higher ratings to ChatGPT's responsiveness on the 31 items describing information needs, giving an overall mean score of 3.77 (SD 0.98) out of 5; the mean score among formal caregivers was 3.13 (SD 0.65), indicating that formal caregivers showed less trust in ChatGPT's responses compared to informal caregivers. ChatGPT’s responses to non-clinical information needs related to dementia patients were generally satisfactory at this stage. As this tool is still under heavy development, it holds promise for providing even higher-quality information in response to information needs, particularly when developed in collaboration with healthcare professionals. Thus, large language models such as ChatGPT can serve as valuable sources of information for informal caregivers, although they may not fully meet the needs of formal caregivers who seek specialized (clinical) answers. Nevertheless, even in its current state, ChatGPT was able to provide responses to some of the clinical questions related to dementia that were asked.

Gendered Trends in Formal and Informal Care Utilization Among Older Adults in South Korea

ABSTRACT Drawing on data from two waves of the Korean Longitudinal Study of Ageing (2010 and 2018), this study examined how community-dwelling older men and women (65+) with functional limitations utilized formal and informal sources of care and how their patterns of care utilization changed over time. The usage patterns of formal and informal caregiving services were categorized into three groups: (a) informal help only, (b) formal-informal mix, and (c) no help from either. More men and women used both formal and informal help for their care needs in 2018 than in 2010 (15% compared to 7%). The proportion of older men who relied on informal help only remained similar across survey years, whereas a smaller proportion of older women relied on informal help only in 2018. Although formal care use has been expanded in South Korea, older men continue to utilize help from their families. However, for older women, the proportion who did not receive any help increased – despite an increase in formal care utilization. These findings highlight the importance of considering gendered resources in caregiving in Korea.

The impact of different perspectives on the cost-effectiveness of remote patient monitoring for patients with heart failure in different European countries.

Heart failure (HF) is a complex clinical syndrome with high mortality and hospitalization rates. Non-invasive remote patient monitoring (RPM) interventions have the potential to prevent disease worsening. However, the long-term cost-effectiveness of RPM remains unclear. This study aimed to assess the cost-effectiveness of RPM in the Netherlands (NL), the United Kingdom (UK), and Germany (DE) highlighting the differences between cost-effectiveness from a societal and healthcare perspective. We developed a Markov model with a lifetime horizon to assess the cost-effectiveness of RPM compared with usual care. We included HF-related hospitalization and non-hospitalization costs, intervention costs, other medical costs, informal care costs, and costs of non-medical consumption. A probabilistic sensitivity analysis and scenario analyses were performed. RPM led to reductions in HF-related hospitalization costs, but total lifetime costs were higher in all three countries compared to usual care. The estimated incremental cost-effectiveness ratios (ICERs), from a societal perspective, were €27,921, €32,263, and €35,258 in NL, UK, and DE respectively. The lower ICER in the Netherlands was mainly explained by lower costs of non-medical consumption and HF-related costs outside of the hospital. ICERs, from a healthcare perspective, were €12,977, €11,432, and €11,546 in NL, the UK, and DE, respectively. The ICER was most sensitive to the effectiveness of RPM and utility values. This study demonstrates that RPM for HF can be cost-effective from both healthcare and societal perspective. Including costs of living longer, such as informal care and non-medical consumption during life years gained, increased the ICER.

Changing care provision in times of changing contexts: the experience of adult children during the pandemic in the UK

The COVID-19 pandemic imposed the suspension of many care services, and families had to choose between adhering to lockdown measures or caring for vulnerable relatives. This study revisits the Informal Care Model by explicitly incorporating the role of changing circumstances during the pandemic to understand care provision by adult children. Using nationally representative data from the UK, statistical analyses reveal that the usual suspects, such as women, were more likely to undertake additional care tasks. However, they also highlight new enabling factors for care provision that have arisen from the pandemic, such as the ability to work from home.

Long-run consequences of informal elderly care and implications of public long-term care insurance

We estimate a dynamic structural model of labor supply, retirement, and informal caregiving to study short and long-term costs of informal caregiving in Germany. Incorporating labor market frictions and the German tax and benefit system, we find that in the absence of Germany’s public long-term insurance scheme, informal elderly care has adverse and persistent effects on labor market outcomes and, thus, negatively affects lifetime earnings and future pension benefits. These consequences of caregiving are heterogeneous and depend on age, previous earnings, and institutional regulations. Policy simulations suggest that while public long-term care insurance policies are fiscally costly and induce negative labor market effects, they can largely offset the personal costs of caregiving and increase welfare, especially for low-income individuals.

Parental health penalty on adult children’s employment: Gender differences and long-term consequences

This study examines the gender-specific and enduring impacts of parental health shocks on adult children’s employment in China, where both formal care and health insurance are limited. Using an event-study approach, we establish a causal link between parental health shocks and a notable decline in female employment, which persists for at least six years following the shock. Male employment, however, exhibits minimal change on average, although this conceals an increase among poor families, indicating a channel beyond heightened informal care. Our findings underscore the consequences of “growing old before getting rich” for developing countries.

An Analysis of financial hardship faced by patients with First Episode Psychosis, and their families, in an Indian setting.

BackgroundThe economic burden of psychotic disorders is not well documented in LMICs like India, due to several bottlenecks present in Indian healthcare system like lack of adequate resources, low budget for mental health services and inequity in accessibility of treatment. Hence, a large proportion of health expenditure is paid out of pocket by the households. ObjectiveTo evaluate the direct and indirect costs incurred by patients with First Episode Psychosis and their families in a North Indian setting. MethodDirect and Indirect costs were estimated for 87 patients diagnosed at AIIMS, New Delhi with first-episode psychosis (nonaffective) in the first- and sixth month following diagnosis, and the six months before diagnosis, using a bespoke questionnaire. Indirect costs were valued using the Human Capital Approach. ResultsMean total costs in month one was INR 7991 ($107.5). Indirect costs were 78.3% of this total. Productivity losses was a major component of the indirect cost. Transportation was a key component of direct costs. Costs fell substantially at six months (INR 2732, Indirect Costs 61%). Respondents incurred substantial costs pre-diagnosis, related to formal and informal care seeking and loss of income. ConclusionFamilies suffered substantial productivity loss. Care models and financial protection that address this could substantially reduce the financial burden of mental illness. Measures to address disruption to work and education during FEP are likely to have significant long-term benefits. Families also suffered prolonged income loss pre-diagnosis, highlighting the benefits of early and effective diagnosis.

An assessment of informal caregivers' knowledge levels on daily and emergency care practices for the elderly: A descriptive cross-sectional study

This study was aimed to determine knowledge level of informal caregivers daily care, emergency situations and the effect of the socio-demographic characteristics of informal caregivers on their knowledge levels. This descriptive and cross-sectional study was conducted between November 1, 2021, and June 30, 2022, with 83 (79.8 %) informal caregivers living in rural areas in northeast Türkiye. The data were collected using the Barthel Index for Activities of Daily Living, the Socio-Demographic Questionnaire, and the Questionnaire for Information on Elderly Care and Situations Requiring Emergency Care. 54 (65.1 %) of caregivers were women, 74 (89.2 %) did not receive training on the daily care of the elderly. A statistically significant difference was determined between the level of knowledge of caregivers about elderly care, caring experience for the elderly and emergency situations, their education level, and their perceptions of needing further information about elderly care (p < 0.05). Informal care givers should be trained by nurses.

Social difficulties and care burden of adult Duchenne muscular dystrophy in Japan: a questionnaire survey based on the Japanese Registry of Muscular Dystrophy (Remudy).

Little is known about the social difficulties and health care needs of adult Duchenne muscular dystrophy (DMD) patients in Japan, as well as the financial and physical stress experienced by their caregivers. This study aimed to clarify the social circumstances surrounding adult DMD patients and assess the degree of involvement of family members in their care and the associated economic burden of the disorder in Japan. Adult DMD patients were identified through the Registry of Muscular Dystrophy (Remudy) in Japan and invited to complete a questionnaire together with a caregiver. Data on health care use, quality of life, work status, informal care, and household expenses were collected to estimate the costs associated with DMD from social and caregiver household perspectives. In total, 234 (63.7%) of 367 adult DMD patients (mean age, 27.4 ± 6.0; range, 20-48years) completed the questionnaire. Of these, 38 (21%) had developmental disorders (mental retardation, autism, and learning disorders), 57 (33%) experienced bullying in school, and 44 (77%) indicated the reason for bullying to be their physical handicap. Employment histories were noted by 72 (31%), although 23 (10%) lost their jobs mainly due to physical difficulties. Of the 234 patients, 164 (74%) lived with their relatives, and 78% of care time was supplied by family members, in particular, their mothers. The mean rate of care work provided by family members was 81%. Household income of families with an adult DMD patient was lower, whereas the rate of living with parent(s) and grandparent(s) was higher, in comparison with the general Japanese population. Adult DMD patients in Japan experience many social difficulties from childhood up to adulthood. As adults, many DMD patients experience bullying and workplace difficulties. Families were found to provide most of the care and financial support for DMD patients. Our results suggest the need to improve public patient care systems, including financial support, to address the physical and economic burdens of care for adult DMD patients in Japan.

Work participation, social roles, and empowerment of Q-fever fatigue syndrome patients ≥10 years after infection.

To determine work participation, social roles, and empowerment of QFS patients ≥10-year after infection. QFS patients ≥10-year after acute infection, who were of working age, participated in a cross-sectional survey study. Work participation, fulfilment of social roles, and empowerment outcomes were studied for the total population, as well as for subgroups based on employment type and current work status. Associations between empowerment, work and social roles were examined. 291 participants were included. Of the 250 participants who had paid work before Q-fever, 80.4% stopped working or worked less hours due to QFS. For each social role, more than half of the participants (56.6-87.8%) spent less time on the role compared to before Q-fever. The median empowerment score was 41.0 (IQR: 37.0-44.0) out of 60. A higher empowerment score was significantly associated with lower odds of performing all social roles less due to QFS (OR = 0.871-0.933; p<0.001-0.026), except for parenting and informal care provision (p = 0.070-0.460). No associations were found between empowerment and current work status. Work participation and fulfilment of social roles is generally low in QFS patients. Many of the participants stopped working or are working less hours due to QFS, and most spent less time on social roles compared to before Q-fever. Minor variation was seen in total empowerment scores of participants; however, these slight differences were associated with the fulfilment of social roles, but not work participation. This new insight should be further explored in future studies.