Carers Research Articles

6.P. Scientific session: Economic evaluation of health impacts for better decision choices

Abstract The strategy of Health in All Policies (HiAP) pursues to analyse the wider determinants of health affected by the decision-making process of traditionally non-health sectors, seeking to enhance population health benefits while avoiding health inequalities. This usually involves the use of health impact assessment (HIA) or health lens analysis to any policy, program, plan or project (PPPP), preferably prior to its implementation. On the other hand, decision-makers from a wide range of public and private sectors also demand a better insight of the meaning of the health impacts quantified under HIA. Assuming the (ubiquitous) situation of limited resources and budgets, decisions need to be based on cost effectiveness criteria and, whenever possible, direct and indirect health costs should be part of the impact assessment. Economic appraisal attempts to define whether a proposal makes a net contribution to social welfare, quantifying and valuing changes to individuals’ utility from the societal perspective, taking into account the impact of health on the individual, their family, employers, healthcare providers and the state. This approach can incorporate different components of the welfare costs of illness, including direct medical and paid care expenses, indirect lost opportunity costs such as productivity and the value of informal care time, as well as a value that monetises the disutility or pain and suffering associated with disease. The range of methods and estimated benefits can make it challenging to identify a best practice approach. The present session aims to address certain methodological aspects related to the economic evaluation of health impacts, which still generate some controversy and debate, with particular emphasis on the following topics: • Approaches for synthesizing evidence on health impact pathways and economic evaluation of health impacts for a better decision choice; • Health metrics: influence on the conclusions of economic analysis within HIA; • Sources of metrics used for economic analysis; • Uncertainties inherent to economic valuation of health outcomes: how to deal with it. Key messages • The economic analysis of health impacts can help prioritizing aspects with the greatest impact on population health, facilitating a more effective use of human and economic resources. • The economic analysis within HIA can improve decision-making but requires careful consideration of health metrics, sourcing of data, and management of uncertainties.

Mental health impacts of spousal caregiving intensity in the US.

In the US, spouses are a major source of informal care for older adults and, therefore, key to the US national strategy to provide long-term care to the growing population of older adults. Understanding the mental health impacts of spousal caregiving is therefore critically important. Existing studies on the topic have often been limited by methodological limitations, and most overlook the role of caregiving intensity. In this study, we assess the impact of providing different intensities of caregiving to a spouse on mental health outcomes using data from the Health and Retirement Study. We address the endogeneity of the decision to provide different caregiving intensities using an augmented inverse probability weighted (AIPW) estimator adapted to handle multivalued treatments. We check the robustness of our estimates to the AIPW's identifying assumptions by re-estimating the model using a dynamic fixed effects estimator. We find strong evidence that becoming a caregiver is associated with worsened mental health outcomes for women, while the evidence for men is weaker. When disaggregating by caregiving intensity, we find that transitions into high-intensity caregiving lead to large increases in depression symptoms and the probability of exhibiting major depression for both men and women. The overall mental health impact of transiting into caregiving is driven almost exclusively by the negative impact of high-intensity caregiving, as transitions into low- and moderate-intensity caregiving are not associated with worsening mental health in most specifications. This study provides timely insights that can inform the targeting of long-term care policies and programs aimed at supporting family caregivers of older adults.

Transformation of informal elder care practices and mobilities during the pandemic

ABSTRACT The COVID-19 pandemic revealed that when formal care services closed down, informal care burden was unequally transferred to women. Women across the world became part of “caregiver pools”. Using textual archive material collected by the Finnish Literature Society, we analyse the transformation of informal elder care practices in Finland. We adopt a care mobility and care process perspective to analyse how informal elder care was transformed due to social distancing measures that restricted ageing individuals and their family members’ local and translocal mobilities. We find that over 70-year-olds had to adapt their daily mobilities according to risk assessment. Caregiving provided by mostly female family members was replaced by digital care at a distance, which reinforced existing inequalities in care. We argue that the pandemic simultaneously brought about both a time–space compression and what we call a time–space expansion that affected the everyday practices and mobilities of care.

‘I am afraid to fly there’: informal care in Polish migrants’ families immobilised by COVID-19

ABSTRACT This paper discusses the COVID-19 pandemic as a new external challenge to transnational family life that can undermine the care arrangements and intentions developed by the families of Polish migrants following the 2004 EU enlargement. The pandemic, associated lockdowns and travel restrictions raise questions about assumed transnationalism, building upon earlier concerns about taking for granted migrants’ cross-national mobility. Based on focus group discussions with Polish grandparents conducted in July 2020 and March 2021, we analyse the pandemic’s impact on intergenerational relations with both geographically close and distant kin. We point to perceptions of risks of COVID-19 associated with ethnicised stereotypes and evolving with time. While the pandemic caused temporary restrictions to mobility, it shows the immobilising side of “unsettling events”], the consequences of which, for privileged EU migrants, will unfold in time as their parents’ age and require personal care.

Successful ability to stay at home - an interview study exploring multiple diagnosed older persons and their relatives’ experiences

BackgroundSociety places increased demands on regions and municipalities to jointly carry out activities for multi-diagnosed older persons with extensive coordination needs. Interprofessional collaboration is reported as an important success factor for the overall health care of this group of patients. This project focuses on older persons with multiple diagnoses and their relatives’ own experiences of what is most important for safety and security in their homes. The aim of the study was: to illuminate the meaning of success for the ability to stay at home as experienced by older persons with multiple diagnoses and their relatives.MethodsThe project had a descriptive explorative design with a phenomenological hermeneutic approach based on analysis of 14 in-depth interviews with older people and their relatives.FindingsOwn resources were identified such as belief in the future, spiritual belief, social network, having loved ones and pets. Technical aids were seen as helpful resources, working as indoor and outdoor security safeguards. These resources included having good telephone contact with social and professional networks as well as other forms of personal equipment such as a personal alarm. The professional network was a resource, acting as support when the patient’s own abilities were not sufficient. Finally, having personnel who had the time and interest to listen was seen as crucial to experience safety.ConclusionsThe main reason for being able to continue homecare was the person’s self-care system, their personal, social, and technical resources. Professional care development should anchor team work to the patient’s own system of self and informal care.

Zwolnienie od pracy z powodu działania siły wyższej i urlop opiekuńczy z perspektywy prawa socjalnego

The subject of this study is to critically discuss the implementation of Directive 2019/1158 on time off from work and carers’ leave from a social law perspective, taking into account the objectives of the Directive and in the context of the EU’s competences regarding social policy. The starting point will be to outline both institutions in the light of the statements in the labour law literature. Next, the instruments in force in Germany for the protection of informal carers during time off or carer’s leave will be presented. Against this background, it will be possible to discuss the existing de lege lata and postulated de lege ferenda regulations of Polish social law, which—as it seems—could and should serve to protect employees using the newly introduced labour law institutions, so as to achieve the goal of ensuring a balance between the professional and private lives of parents and carers.

Examining Factors That Contribute to Poststroke Depression Within the Family Caregiver and Care Recipient Dyadic Experience

Purpose: Stroke survivors often experience biochemical changes in the brain. This decreases the ability to experience positive emotions. Stroke survivors contend with the loss of their former self and are often left with residual physical, cognitive, communicative, and psychological changes leading to a depressive state. With an increasing number of stroke survivors returning to the community, informal care provided by family members will continue to rise. Many of the challenges faced by stroke survivors with poststroke depression (PSD) and by family caregivers (FCGs) have a significant impact on the relationship itself. With the goal to obtain insight into potential contributing factors to poststroke depressive features in stroke survivors, this qualitative research study aimed to investigate the experiences, behaviors, and perceptions of participants with PSD living in the dyadic relationship between FCG and stroke survivors. Method: Six FCG–stroke survivor care recipient dyads served as the participants. All stroke survivor care recipients were diagnosed with or had signs and symptoms of depression poststroke. Semistructured interviews were conducted with stroke survivors within each dyadic relationship. All participants were within this dyadic relationship for at least 3 months. Results: Six themes emerged from the stroke survivors. The findings indicated that grieving of the former self, lack of self-efficacy, isolation, difficulty with communication, perceived stress of the FCG, and lack of depressive coping skills are factors that contribute to PSD. Conclusions: There were multiple factors experienced by stroke survivors within the dyad affecting their emotional state and leading to or exacerbating depressive symptoms. Additionally, stroke survivors have limited coping strategies for depressive symptoms. Stroke survivor informational counseling, training, and education may improve coping strategies and decrease symptoms of depression and therefore lead to strengthened rehabilitative outcomes. Supplemental Material: https://doi.org/10.23641/asha.27156381

Risk factors for hospitalisation in community-dwelling pre-frail and frail older people: results of a longitudinal study.

Older adults account for a large proportion of hospital admissions. In this study we aim to bridge a gap between medical and psychosocial factors in predicting hospitalisation. Demographic and social characteristics of community-dwelling pre-frail and frail older people were collected by questionnaires every six months during a two year follow-up. Hospital admission within this period was dichotomised as yes/no. To define pre-frailty and frailty the Fried frailty criteria were used. Analysis of risk factors for hospitalisation was performed using multivariable logistic regression. Hospitalised participants (n = 1803) were more often male and frail in comparison to not-hospitalised participants. They also experienced more chronic diseases (54.5% ≥ 4 chronic diseases), poorer self-perceived health (SPH) (76.4% fair to very poor) and lack of informal care (20.1%). In multivariable logistic regression male gender (Odds ratio (OR) 1.65, p < 0.001), frailty (vs. pre-frailty) (OR 1.66, p = 0.002), reporting lower SPH (OR 3.12, p < 0.001) and lacking informal care (OR 1.69, p < 0.001) showed significant associations with hospital admission. Subgroup analysis of pre-frail and frail participants, showed consistent associations between male gender (respectively OR 1.61, p < 0.001 ; OR 1.72, p = 0.085), lower SPH (OR 2.23, p = 0.001; OR 31.16, p < 0.001), lack of informal care (OR 1.64, p = 0.005; OR 2.63, p = 0.012) and hospitalisation. Frailty, male gender, lower SPH and lack of informal care are risk factors for hospitalisation within community-dwelling older people, showing the need of a holistic approach to possibly prevent hospitalisation. Further research should focus on evaluating individual factors for hospitalisation, particularly targeting pre-frail individuals.

Physical and Mental Health of Informal Carers from Culturally and Linguistically Diverse (CALD) and Non-CALD Groups in Australia.

Empirical evidence shows that many family carers, especially immigrants, experience considerable health disadvantages and poorer quality of life. Australia has a rapidly increasing multicultural population, officially referred to as Culturally and Linguistically Diverse (CALD) people. This paper explores similarities and differences in the carer profile and physical and mental health of CALD and non-CALD family carers. A cross-sectional anonymous survey was conducted of self-reported family carers aged 18 years and older. Identical paper and online survey modes were provided to enable choice. Key variables included demographic and carer profile, diagnosed chronic physical health conditions, and validated scales such as CESD-12 and MOS-SF12, including derivative composite Physical and Mental Component Summary (PCS and MCS, respectively) scores. The sample comprised 649 participants (CALD = 347, non-CALD = 302). The analyses included univariate, bivariate, and multivariable linear regression analyses for three outcome variables: PCS, MCS, and CESD-12. CALD carers were comparatively younger and married, and 54% had university-level education (29% in the gfvnon-CALD group). Women were primary carers in both groups (67.4% versus 72.2%). The weekly care hours were higher for non-CALD carers. Both groups had below population-referenced scores for mean PCS and MCS values. For CESD-12, non-CALD respondents had higher scores (17.5 vs. 11.2, p < 0.022). Regression analyses showed significant differences for demographic, carer, and physical health variables across the three outcome variables. Women have a higher domestic workload, which, when combined with high care hours, adversely impacts physical and mental health. The need for improved and culturally aligned care support systems is required.

Intensity of care and the health status of caregivers to elderly rural South Africans.

Informal caregivers play an indispensable role in and are often the sole source of care for older adults in low and middle-income settings worldwide. Intensive informal care predicts mortality and morbidity among caregivers in higher-income settings. However, there is limited evidence from poorer settings, including Africa countries, where caregiving is shared widely, including across generations. We therefore investigated caregivers' health status in rural South Africa. We conducted quantitative interviews with all household members and all non-household caregivers aged ≥12 (n=1012) of 106 older adults in rural Mpumalanga, South Africa. We used multivariable regression with care-recipient random intercepts to assess the relationships between four caregiving characteristics and both self-reported chronic conditions and self-reported health status, considering how caregiver age moderated each association. Over half of all caregivers reported at least one chronic health condition, despite half being aged under 40. Caregivers self-reporting the worst health status provided high hours of care. However, caregivers' health status was not significantly associated with weekly care quantity or history of caring. Those aged ≥40 who reported being a main caregiver had 52% increased odds of reporting poorer health compared to other same-aged carers (95% confidence interval: 0.99, 2.35), while having more chronic conditions was associated with being expected to act as a sole caregiver more often among caregivers aged ≤39. Greater caring responsibilities for older adults were not consistently associated with caregivers' health in a setting where poor health is common, and caregiving is spread widely. Longitudinal data is necessary to unpack possible explanations of these findings, and to determine whether intensive caregiving speeds downward health trajectories for carers.

Prehospital factors associated with mortality among road traffic injury patients: analysis of Cameroon trauma registry data

BackgroundCameroon is amongst the worst affected countries by road traffic injuries with an estimated 1443 disability-adjusted life years per 100,000 population. There have been very limited reports on the crucial prehospital response to road traffic injuries in Cameroon. This study aimed to identify prehospital factors associated with RTI mortality in Cameroon.MethodsWe included patients enrolled between June 2022 and March 2023 in the Cameroon Trauma Registry. Information about prehospital factors and demographic data was obtained from patients or their proxies. We examined the association of prehospital care factors like care at the crash scene and type of transportation during crash with final patient outcome. We used Chi-squared test to investigate the association between selected independent variables and mortality. A multivariable logistic regression model was built to identify independent predictors of dying from an RTI.ResultsRTIs constituted 69.5% (n = 3203) of all injuries in the Cameroon Trauma Registry. Only 20.7% (n = 102) of 4 + wheel vehicle occupants had seatbelts on and just 2.7% (n = 53) of motorcycle riders were wearing helmets during the collision. Only 4.9% (n = 156) of patients received any form of scene care. In-hospital mortality was 4.3% (n = 139) and was associated with male sex (AOR = 1.7, 95%CI = 1.08–2.80), crashing on a motorcycle (AOR = 2.08, 95%CI = 1.1–3.67) and scene care (AOR = 0.25, 95%CI = 0.04–0.80).ConclusionsReceiving any type of care at the scene such as bleeding control or being placed in the recovery position by bystanders is associated with improved survival. Improving on existing informal prehospital care responses should be a priority in Cameroon.

Healthcare professionals' perceptions on providing support to informal carers within stroke care.

The sudden nature of stroke onset does not provide carers with sufficient time to prepare for the demands associated with caring. Healthcare professionals can have a vital role in providing carers with support and training, which may reduce carer stress and strain, and allow for better health and rehabilitation outcomes for the stroke survivor. The experiences of healthcare professionals on supporting carers in stroke care, however, remain unclear. To understand the experiences and perceptions of healthcare professionals working in stroke care on implementing resources and support to informal stroke carers. Semi-structured interviews were conducted with 11 healthcare professionals (5 occupational therapists, 5 physiotherapists, 1 psychologist) with at least 12 months' experience in working with stroke survivors. Interviews ranged from 25-70 minutes in duration, and were recorded, transcribed, and analysed using thematic analysis. Three overarching categories that were explored were: (1) Experiences of working in stroke care and supporting carers; (2) Recommendations for a program designed for carers; and (3) Future priorities in stroke care. Participants discussed a variety of strategies they utilised to support carers including collaborating with other healthcare professionals and utilising skills and experience. Healthcare professionals highlighted the need for additional resources that are designed specifically for carers and explored key topics including carer stress and fatigue, support services, stroke education, and how to look after oneself. Participants identified priorities for stroke care including additional professional training and resource availability. This study provided a unique insight from the perspectives of healthcare professionals on supporting carers. Participants identified the need for additional training and resources to equip healthcare professionals to better support carers. Future programs designed for carers should be informed by the needs and experiences of both informal carers and healthcare professionals.

Unlocking the power of tobacco taxation to mitigate the social costs of smoking in Mexico: a microsimulation model.

Despite being the most cost-effective tobacco control policy, tobacco taxation is the least implemented component of the World Health Organization MPOWER package to reduce smoking worldwide. In Mexico, both smoking prevalence and taxation have remained stable for more than a decade. This study aims to provide evidence about the potential effects of taxation to reduce the burden of tobacco-related diseases and the main attributable social costs in Mexico, including informal (unpaid) care costs, which are frequently ignored. We employ a first-order Monte Carlo microsimulation model that follows hypothetical population cohorts considering the risks of an adverse health event and death. First, we estimate tobacco-attributable morbidity and mortality, direct medical costs and indirect costs, such as labour productivity losses and informal care costs. Then, we assess the potential effects of a 50% cigarette price increase through taxation and two alternative scenarios of 25% and 75%. The inputs come from several sources, including national surveys and vital statistics. Each year, 63 000 premature deaths and 427 000 disease events are attributable to tobacco in Mexico, while social costs amount to MX$194.6 billion (US$8.5)-MX$116.2 (US$5.1) direct medical costs and MX$78.5 (US$3.4) indirect costs-representing 0.8% of gross domestic product. Current tobacco tax revenue barely covers 23.3% of these costs. Increasing cigarette prices through taxation by 50% could reduce premature deaths by 49 000 over the next decade, while direct and indirect costs averted would amount to MX$87.9 billion (US$3.8) and MX$67.6 billion (US$2.9), respectively. The benefits would far outweigh any potential loss even in a pessimistic scenario of increased illicit trade. Tobacco use imposes high social costs on the Mexican population, but tobacco taxation is a win-win policy for both gaining population health and reducing tobacco societal costs.

The roles of employment status and income in the mental health of informal caregivers in Germany

BackgroundInformal caregivers often experience multiple negative consequences as a result of the informal care they provide. Among other factors, employment status, financial resources, and mental health are related to informal caregiving. This analysis examined the association between informal caregivers’ employment status and their mental health, as well as the moderating effect of net household income on this relationship.MethodsThe research question was addressed with data from the German Socio-Economic Panel (SOEP) survey, comprising 3,053 informal caregivers (1,007 male; 2,046 female). Data were obtained through self-reports, and mental health was measured with the Summary Scale Mental Score. Stepwise adjusted multiple linear regression models were used to examine the association between employment status and mental health. The moderating effects were tested with interaction terms. All analyses were also stratified for gender.ResultsInformal caregivers with full-time jobs reported better mental health than unemployed or marginally employed caregivers (β = 0.077, p < 0.001). The significant interaction term for full-time (β=-0.066, p = 0.001) and part-time workers (β=-0.066, p = 0.003) indicated a moderating effect of net household income on the association between employment status and mental health. This finding was especially evident in women.ConclusionsEmployment appears to be a relevant protective factor for informal caregivers’ mental health. However, if informal caregivers are not employed, a low net household income might additionally restrict their mental health. Therefore, welfare policy structures must be created to reduce the negative financial consequences for informal caregivers and enable them to achieve work-life-care balance.

The Friends and Family for Mental Health Program: a pilot study of a cognitive behavioral therapy skills intervention for rural adults.

Limited access to psychological treatment is a pressing problem in the US, especially in more rural areas. One potentially underutilized resource is informal care from friends and family members. Although those in rural areas rely on informal care more than those in urban areas, there is little to guide interested caregivers in how they can be most effective. In this study, we conducted a pilot test of the Friends and Family for Mental Health Program, a mental health skills program we developed to enhance informal care and reduce psychological symptoms among informal caregivers. To provide an initial test of the potential benefits of this program, we evaluated the impact of the program on informal care skills, hope, psychological symptoms, and mental health skills. Informal care skills and hope improved. Participants also reported reduced anxiety. We considered intervention feedback to inform intervention development. Overall, findings provided preliminary support for the program and provide directions for future refinements. Though further research is needed, initial evidence suggests mental health skills programs directed at informal caregivers are both desired and beneficial in rural areas.

Love, support and structural holes: Māori whānau carer experiences in collective family care systems

Abstract As the population of Aotearoa New Zealand ages, informal family carers will play an increasingly important role in caring for older adults at home. Multi-generational living arrangements are a growing trend, particularly among Māori communities, where caring for older relatives within the family home is widespread. This article uses in-depth, semi-structured interviews with Māori whānau (extended family members) caring for kaumātua (older family members) at home to explore how carers experienced care coordination in the broader care collective. The findings centred on three interconnected factors that described the collective organisation of care: (1) whānau care as normal; (2) whānau care as collective coordination; and (3) whānau carer knowledge and needs as unseen. The findings show that although whānau care of kaumātua is highly valued, ‘structural holes’ within care systems contribute to challenges in care coordination. Despite extensive whānau support for kaumātua, primary carers often felt that their knowledge, preferences and self-care needs remained unseen and not translatable to those outside the everyday care situation. Rather than assuming an artificial binary difference between ‘collective’ and ‘individually oriented’ care contexts and cultures, analysing the cultural norms surrounding whānau care-giving confirms that collective care system members face similar and different challenges to carers with smaller caring capacities.

Hospital Experiences of Carers in Relation to the Comprehensive Care Standard: A Mixed Method Study.

To explore the care experiences of informal carers of people with chronic conditions in hospitals and identify areas for improvement in the context of comprehensive care delivery. A explanatory sequential mixed-method study. This study was conducted, involving a survey with 182 carers and interviews with 31 carers of individuals who attended an Australian hospital. Descriptive analysis of quantitative data was performed using RStudio, while thematic analysis of qualitative data was conducted using NVivo. The findings revealed seven overarching components of care that influenced carers' hospitalexperiences and their perceptions of care quality. Areas requiring improvement were identified within these categories. This review identifies common perspectives of informal carers of people with chronic conditions in hospital settings and highlights important areas that require attention to improve carers' hospital care experiences. Carers should be welcomed, involved, informed and supported during hospital attendance to foster the most positive care experiences. Healthcare professionals should involve carers in assessment, shared decision-making and the care process and recognise and address carers' needs. The findings revealed the carer's hospital experiences in the context of comprehensive care delivery and identified areas requiring improvement. The CROSS and the COREQ guidelines were followed. The study protocol was presented to stakeholders from two hospitals in Australia, a Patient and Carer Advisory Board (attached to the parent project: evaluating Quality of Care (eQC))and the Australian Commission on Safety and Quality in Health Care, and discussions were held to assess the relevance and significance of this study to clinical practice and health policy.

Including carer health-related quality of life in NICE health technology assessments in the United Kingdom.

The impact of health technologies may extend beyond the patient and affect the health of people in their network, like their informal carers. The National Institute for Health and Care Excellence (NICE) methods guide explicitly allows the inclusion of health-related quality of life (HRQoL) effects on carers in economic evaluations when these effects are substantial, but the proportion of NICE appraisals that includes carer HRQoL remains small. This paper discusses when inclusion of carer HRQoL is justified, how inclusion can be substantiated, and how carer HRQoL can be measured and included in health economic models. Inclusion of HRQoL in economic evaluations can best be substantiated by data collected in (carers for) patients eligible for receiving the intervention. To facilitate combining patient and carer utilities on the benefit side of economic evaluations, using EQ-5D to measure impacts on carers seems the most successful strategy in the UK context. Alternatives to primary data collection of EQ-5D include vignette studies, using existing values, and mapping algorithms. Carer HRQoL was most often incorporated in economic models in NICE appraisals by employing (dis)utilities as a function of the patient's health state or disease severity. For consistency and comparability, economic evaluations including carer HRQoL should present analyses with and without carer HRQoL.

Projections of Socioeconomic Costs for Individuals with Dementia in China 2020-2050: Modeling Study.

Previous estimates on future socioeconomic costs of dementia in China are inconsistent, and the main drivers of these costs are unclear. This study projected future socioeconomic costs (healthcare, formal social care, and informal care costs) and value of quality adjusted life years (QALYs) lost to dementia in China and assessed drivers of socioeconomic costs. Based on our prior projection on dementia cases to 2050 by a Markov model, we forecasted future socioeconomic costs and the value of QALYs from a societal perspective, utilizing the China Health and Retirement Longitudinal Study and the Chinese Longitudinal Healthy Longevity Survey. In our main analysis, dementia incidence increased by 2.9% annually, while sensitivity analyses considered a flat or 1.0% annual decrease in the temporal trend of dementia incidence. Furthermore, we decomposed socioeconomic costs changes (2018 US$) into population growth, population aging, dementia prevalence and average socioeconomic costs per case. The annual socioeconomic costs and value of QALYs lost to dementia will reach $1,233 billion and $702 billion by 2050. If dementia incidence stays constant or decreases by 1.0% annually, the costs and QALYs would respectively decrease by 34% or 43% in 2050. Informal care is currently, and projected to remain, the largest share of socioeconomic costs. Population aging and rising dementia prevalence will mainly drive the growth in socioeconomic costs through 2050. Dementia casts an increasingly large economic burden on Chinese society, mainly driven by fast aging population and growing dementia prevalence.

Exploring the workload of informal caregiving in the context of HIV/NCD multimorbidity in South Africa.

The importance of informal caregiving for chronic illness has been well established in African contexts but is underexplored in the context of HIV/NCD multimorbidity, particularly in South Africa. Building on treatment burden theories that investigate workload in the context of chronic illness, this paper explores how informal caregiving networks impact the capacity of people living with multimorbidity (PLWMM) in low-income settings in urban and rural South Africa. Qualitative semi-structured interviews were carried out with thirty people living with multimorbidity and sixteen informal caregivers between February and April 2021 in two settings, Cape Town (urban) and Bulungula (rural). Interviews were transcribed and data analysed both inductively and deductively using framework analysis, hereby, building on the principles of the burden of treatment theory (BoTT) as a theoretical lens. Our findings show that informal carers provided different types of support to people living with multimorbidity, including emotional, logistical, health services and informational support to ease the patient's treatment burden. Additional support networks, access to grants or financial security, and feeling a duty to care eased the perceived carer burden while a lack of social support, financial hardship and insufficient information decreased their capacity to support others. Overall, the availability of informal caregiving increases the self-management capacity of people living with multimorbidity in low-income settings in South Africa. Informal caregiving in the context of multimorbidity is structured through social obligations, kinship connections, cultural expectations, and an individual sense of agency. Carers, even when committed to assist, also experience caregiving opportunity costs, which are rarely addressed in the literature. By proposing interventions that can actively support informal caregivers, we can begin to develop solutions that can optimize the role of informal care networks, with a view to improve health-outcomes of PLWMM in South Africa.