Unpaid Care Research Articles

Working against the clock: digital surveillance in US Medicaid homecare services

This article explores the implementation of a digital verification system known as Electronic Visit Verification (EVV) across homecare services for older and disabled adults within the US Medicaid program. EVV systems are used to conduct daily check-ins through GPS tracking and biometric identity verification. While touted as a means to identify and deter “fraud, waste, and abuse,” the digital monitoring also generates detailed data trails on the lives and habits of service recipients, as well as constraining their daily movements. Drawing on qualitative interviews with workers and clients, I argue that this case study calls attention to how harms from digitalization of social welfare provision emerge from workplace surveillance and labor management, and how EVV becomes a tool for more finely tuning classifications of different types of paid and unpaid care. The burdensome digital compliance hurdles reinforced older employment tensions between the state, care workers, and public benefits recipients.

How does Carer’s Allowance in the UK construct family carers? History and recent developments

This article explores the historical development of Carer’s Allowance in the UK, alongside legal challenges and recent proposals for changes to it in Scotland. Eligibility criteria for receipt of this allowance construct carers as people of ‘working age’ who provide care within dyadic relationships and exclude people whose unpaid caring work is more complex and/or interdependent. Disabled people are simultaneously constructed as dependent recipients of this care. Carer’s Allowance provides symbolic but conditional recognition of unpaid caring, while doing little to meet the financial or support needs of carers. This symbolism reinforces the role of gendered families as the main providers of care and of disabled people as dependent.

Abstract 4: Unveiling the Economic Burden of Stroke in the European Union: Comparisons With the USA

Introduction: Stroke places a significant economic impact on health and social care systems, as well as indirect costs through premature retirement, and absenteeism, reducing productivity and economic output, and necessitating care for patients from friends and family. This study aims to provide novel and up- to-date evidence on the economic burden of stroke across 27 EU countries allowing to draw comparisons with the USA. Methods: Stroke-related costs were estimated for 27 EU countries in 2021. Country-specific resource use was estimated using aggregate data on morbidity, mortality, health, social and informal care, apportioned to stroke using patient-level data based on responses from 140,000 participants. Resource use was valued using country-specific unit costs. To allow for meaningful comparisons with the 2018 American Heart Association (AHA) estimates of stroke costs in the USA, costs are reported in US $ adjusted for price differentials and inflation. Results: In 2021, excluding long-term care costs as not included in AHA estimates, stroke cost the EU health care systems $39 billion (2% of health expenditure). Within this total, there was wide variation in per-capita healthcare costs (ranging from $30 in Malta to $177 in Austria), with that for the EU being $87. In the USA, comparable stroke-related healthcare costs accounted for 2% ($35 billion) of US health expenditure, and $108 per capita (comparable to Belgium - $103). In the EU-27, productivity losses due to early mortality were estimated at $8 billion ($19 per capita), compared to $21 billion in the USA ($65 per capita). Long-term nursing home care costs were є21 billion in the EU-27, driving the proportion of total healthcare expenditure due to stroke to 3%. Unpaid care for stroke patients accounted for $38 billion in the EU-27, with absence from work costing the EU economy an additional $4 billion. The total costs of stroke for the EU-27 were $110 billion. Conclusions: This study provides contemporary estimates of the wide-ranging impact of stroke on all aspects of 27 European countries’ economies, allowing for meaningful comparisons with the USA. The data help inform evidence based polices to reduce the impact of stroke, promoting care access and better health outcomes and economic sustainability.

Battling Alone on Multiple Fronts - How Gender Norms Affect the Soldiers' Wife as Caregiver in India.

Women form the backbone of caregiving in palliative home care throughout the world. They put in more intense care for longer hours, perform more intimate tasks, and face more physical and mental strain, comorbidities, anxiety, and depression. However, gender norms that perceive caregiving as a natural part of femininity dismiss this as part of their duty toward their family, thus making their care work invisible, taken for granted, and devalued. This results in women bearing more burden with less support and no appreciation and suffering more negative mental and physical health outcomes than men. Globally, women perform 76.2% of unpaid care work. India ranks a dismal - 135 out of 146 countries in the 2022 Gender Gap report. Less than 10% of Indian men participate in household work. Women in rural India continue to be less educated; the majority are not allowed to travel alone and are culturally not involved in decision-making, which is done by the males. Wives of armed forces personnel are forced to live without their husbands for long periods. This leads to even more challenges when they also need to take care of patients with life-limiting illnesses. No study has been done on this population till now. This study aimed to explore the experiences of the women in armed forces families, caring at home for patients with palliative needs. This was a qualitative study based on a thematic analysis of semi-structured interviews with adult caregivers - either serving personnel or their dependent family members. Female relatives were the main caregivers in 13 cases; the majority belonged to rural areas, were between 22 and 47 years of age, most were married, had young children, and reported health issues of their own. Major themes that emerged include lack of information, the expectation of being a caregiver irrespective of ability/needs, physical and psychological burden, neglected emotional needs, difficulty in traveling alone, social isolation, loss of employment with the financial burden, stigmatisation and ill-treatment of widows by in-laws. 'Soldier's wives, who must stay alone, face increased burdens as they face not only the physical and emotional burden of caregiving but also the additional challenges of living alone, mostly in rural Indian society, where gender norms are still deeply ingrained. Creating awareness about this vulnerable community among palliative care providers is required to improve services for them. There is also an urgent need for identifying, challenging, and addressing stereotyped roles and disparities in healthcare systems, practices, care goals, and policies by sensitising staff, educating families, developing gender-sensitive resources and support systems, initiating care discussions, and undertaking more gender-related research.

Choice of formal and informal care among community-dwelling older people with or without dementia under a long-term care insurance pilot program in China.

This study examines the use of publicly funded formal and informal care among community-dwelling long-term care insurance (LTCI) beneficiaries in China and how dementia differentiates the choice of care. Using administrative data from a LTCI pilot scheme in Guangzhou (n = 2043), we conducted a multinomial logistic regression to examine the association between dementia and the choice of family members (informal unpaid care), domestic helpers (informal paid care) and care workers (formal care), controlling for demographics, living environment and intensity of paid care hours. Most LTCI beneficiaries chose a family member (65%), followed by a domestic helper (21%) and a care worker (14%). After controlling for covariates, LTCI beneficiaries with dementia were more likely than their counterparts without dementia to choose care provided by a care worker (RRR: 1.73) or a living-in helper (RRR: 1.43) than a family member. A preference for informal care was observed among LTCI beneficiaries in China. Those with dementia were more likely than those without dementia to use care provided by non-family caregivers. The pilot scheme findings provide further insight into care recipients' preferences for service utilisation and how dementia impacts these preferences, which should be considered in future policy and service provision.

Supporting adult unpaid carers via an online dancing intervention: A feasibility/acceptability study.

Unpaid carers often experience poor mental and physical health linked to their caring role. Engagement in physical activity has been shown to alleviate these negative health outcomes, but it is harder for carers to find the time, energy and space to exercise. This qualitative study, based in the UK, explored the feasibility of an online, dance-based physical activity intervention with six female unpaid carers. Five themes resulted from the thematic analysis of the pre- and post-intervention interviews: Perceived physical health benefits of the intervention; Perceived mental health benefits of the intervention; Satisfactoriness of the dance classes; Impact of caring responsibilities on participation; and Suggestions for future classes. Further research is required to measure the effectiveness of the dance intervention in improving mental and physical wellbeing with larger samples including a wider mix of carers in terms of gender, age and health conditions of the care recipients, as well as international samples. Future research should also consider the barriers that some carers may face when accessing an online intervention, and alternative forms of exercise that may appeal to other groups of carers (e.g., male carers, older adult carers).

Co-producing a board game to learn and engage about dementia inequalities: First impacts on knowledge in the general population.

Receiving and accessing care after a diagnosis of dementia, both for the person and their carer, are fraught with inequalities. The aim of this public engagement activity was to co-produce a board game about dementia inequalities to facilitate learning, dialogue and educate about different barriers,and facilitators, to diagnosis and careand to test the game's impact on dementia knowledge with the general public. Two virtual and two face-to-face workshops with people with dementia, unpaid carers, health and social care professionalsand Third Sector representatives were held between October 2022 and June 2023. Virtual workshops involved discussions of inequalities and how a board game may feature inequalities. The first face-to-face workshop was split into the same activities, aided by outcomes from workshops 1 and 2. Workshop 4 attendees tested the prototype. The impact of the game on knowledge about dementia and inequalities was tested at a game play workshop in October 2023. Forty stakeholders attended four workshops. Workshops provided step-by-step thoughts on how the game could be designed or modified. The final game, prototype tested in workshop 4, consists of a one-sided, two-half board depicting the prediagnosis process (left half) and postdiagnosis process (right half). Fifty-two members of the general public participated in the game play workshop, which led to significant improvements in knowledge about dementia (p < .001) and inequalities (p < .001). The game can be used to improve knowledge about dementia inequalities for health and social care professionals, carers, people living with dementia, decision makersand the general public. This engagement activity fully involved people with dementia, unpaid carers, health and social care professionalsand Third Sector representatives throughout, with two unpaid carers as public advisers on the team.

Do Health and Well-Being Change Around the Transition to Informal Caring in Early Adulthood? A Longitudinal Comparison Between the United Kingdom and Germany

PurposeProviding care in early adulthood may have long-term consequences, given the importance of this life stage for life-course transitions. This study aimed to analyze how the transition into caring during young adulthood (17–29 years old) influenced health and life satisfaction in the United Kingdom and Germany. MethodsDatasets were from 10 annual waves of the UK Household Longitudinal Study and the German Socioeconomic Panel between the years 2009–2018. We used propensity score matching to match young adult carers (YACs) to similar noncarers to address the endogeneity of unpaid care provision. Then we applied piecewise growth curves to observe changes in self-rated health (United Kingdom N = 2,851; Germany N = 454) and life satisfaction (United Kingdom N = 2,263; Germany N = 449) between YAC and noncarers before, during, and after the onset of care. We assessed carer status, weekly hours spent on care, and duration of care. ResultsIn the United Kingdom, life satisfaction decreased and the probability of reporting poor health increased after becoming a YAC, particularly for those who reported caring for more weekly hours. However, no such differences were found between YAC and noncarers in Germany. DiscussionThe onset and intensity of caring responsibilities during early adulthood influenced health and life satisfaction in the United Kingdom but not in Germany. One possible interpretation for these differences may be attributed to the different welfare contexts in which YACs are providing informal care. Our results highlight the importance of identifying and supporting the needs of young adults who are providing informal care while making key life-course transitions.

“The Pandemic is Just Happening on Top of a Pandemic for Us”. Unpaid Carers’ Experiences of Lockdown in the UK: A Thematic Analysis

“The Pandemic is Just Happening on Top of a Pandemic for Us”. Unpaid Carers’ Experiences of Lockdown in the UK: A Thematic Analysis

Unpaid carers’ experiences of supporting people with dementia to use social media

Objectives: The aim of this study was to explore unpaid carers’ experiences of supporting people with dementia to use social media.Methods: Unpaid carers (n = 234) responded to an online survey about their attitudes towards people with dementia using social media and any experiences supporting this usage. Responses to closed questions were analysed using frequency analysis; qualitative data were analysed thematically.Results: Fifty-five carers (23.5%) cared for someone with dementia who used social media. Thematic analysis produced four themes: (1) carers as social media navigators; (2) social media supports care; (3) carers as social media guardians; and (4) labour-intensive work. Carers valued the social connectivity and stimulation social media provided but remained vigilant about online safety. They carefully managed the online experiences of people with dementia, balancing perceived benefits with safety, security, and caring demands.Conclusions: These findings shed light on the complexities of caring in the digital age. Many carers are supporting people with dementia in using social media, but there is little guidance on how best to do this. As older adults continue to embrace social media, carers, support organisations, and policymakers must adapt and work with technology developers to ensure safe and supportive online experiences.

Family Caregiver Adaptation during the Transition to Adulthood of Individuals with Intellectual Disabilities: A Scoping Review.

During the transition to adulthood, individuals diagnosed with intellectual disability (ID) and their family caregivers have unique experiences. This scoping review studies the sources of the family caregiver's objective burden, support, coping mechanisms, positive caregiving, and quality of life to understand the caregiver's adaptation process when the individual with ID transits to adulthood, according to Joanna Briggs Institute (JBI) Scoping Review methodology guidelines. The inclusion criteria included studies of family caregivers of any age who provide unpaid care and live with individuals diagnosed with ID who are transitioning to adulthood. Of 2875 articles identified, 12 published studies were included. The main themes included caregivers reporting dissatisfaction with the available adult services and exhaustion from being a caregiver. Overall, a vicious cycle of likely increased demands during the transition, with caregivers not being prepared to cope with these demands while concurrently being dissatisfied with the adult services system, leads the caregivers to develop a pervasive sense of helplessness. Future studies would benefit from recruiting caregivers from sources other than adult-only service centres and using qualitative (to identify the broad aspects of the key factors) and quantitative (to identify the significant differences between the key factors) methodologies.

The experiences and impact of the COVID-19 pandemic on young carers: practice implications and planning for future health emergencies

BackgroundYoung carers are children or young people aged up to 25 years old who undertake unpaid caring responsibilities for a friend or family member. Young carers faced significant challenges brought on by the COVID-19 pandemic. We explored the impact of the pandemic and associated restrictions on mental health, wellbeing and access to support in young carers in the United Kingdom (UK) to understand how to improve services, as well as support this population in future health emergencies.MethodWe conducted 22 qualitative semi-structured interviews from May to November 2021 with 14 young carers and eight staff working in organisations that supported them. Interviews took place remotely over video or telephone call and explored participant experiences of the pandemic and its impact on their health, wellbeing and caring responsibilities. We used reflexive thematic analysis to analyse interview transcripts.ResultsWe identified four overarching themes pertaining to the impact of the pandemic and associated restrictions on mental health, wellbeing and access to support in young carers in the UK: (1) challenges in protecting loved ones from the virus, (2) changes to and loss of routine, (3) reduced access to pre-pandemic informal and formal support structures and (4) better understanding of inner resilience and goals. Many participants struggled with their mental health and wellbeing as a result of pandemic related restrictions which impacted on support structures for themselves and the individual they cared for. However, positive impacts pertained to additional support provided by local authority and third sector organisations.ConclusionsOur findings highlight some of the changes that affected young carers during the COVID-19 pandemic. The impact of changes to routine and a reduction in pre-pandemic support were the greatest concerns reported by participants in this study. The additional support provided by local authority and third sector organisations during social restrictions suggests such organisations could play a greater role in supporting this population going forward and that schools and Governments may wish to put in additional strategies and provisions to protect young carers in the future.

The everyday life occupations of older women in social vulnerability in Brazil

ABSTRACT Population aging is widely discussed due to the impacts of increased life expectancy, especially in socially vulnerable populations. This descriptive-exploratory qualitative study aims to understand older women’s perceptions of their occupations in a socially vulnerable community. The participants were 11 women, aged 60 years or older, living in Vila Marçola, Aglomerado da Serra, Minas Gerais, Brazil. Semi-structured interviews were carried out and the content was analyzed by using thematic analysis. Findings indicated four care dimensions: 1) Household care and caring for other people, 2) Community care, 3) Self-care, and 4) Expanding the experiences of care in old age. Older, mostly black, and poor women from Vila Marçola highlighted the unequal living conditions in Brazil. These women were overloaded with occupations, especially paid and unpaid household care, and did not have access to or stability in other occupations. However, retirement allowed them to participate in educational and social projects, increasing their occupational repertoire. This study contributes to the construction of intersectional knowledge in the field of occupational science, expanding the understanding of the socio-cultural dimensions that involve the diversity of people around the world, especially in situations of social vulnerability.

Voices of unpaid carers: problems and prospects in accessing palliative care and self-care information, resources and services.

Unpaid carers make a substantial contribution to the health economy and carers of palliative patients are particularly vulnerable due to special patient needs and excessive carer burden. The Australian Government recently implemented the Integrated Carer Support Service Model to provide a range of free services to carers in the community. However, it is unclear whether such initiatives are effective and, more importantly, how carers of palliative patients gain access to information, support and services for the patient and themselves. We sought to investigate unpaid carers' experiences in accessing information and resources for support with patient care with a specific focus on palliative care resources and to determine carers' access to information and support for self-care. We also aimed to identify what opportunities and challenges remain for these particular carers according to their experiences. We conducted 18 semi-structured interviews and 3 focus groups with unpaid family or friend carers of palliative patients in South Australia from metropolitan, regional and rural communities. Grounded in a descriptive phenomenological paradigm, we conducted a hybrid approach to thematic analysis combining deductive and inductive coding following Fereday and Muir-Cochrane's method. The government's web-based initiative provided little impact in supporting carers from our cohort. There remains a substantial gap between the formal recognition of the importance of carers and their lived reality. This recognition by health professionals is vital, as carer self-identification is not common and affects help-seeking behaviour. Carers seek and respond to more grassroots, personalized forms of support and sharing of information. The lack of self-identification affects carers' help-seeking behaviours. Carer identification and recognition need to be initiated by health professionals in a proactive manner to ensure carers are prepared for their role and are emotionally supported to sustain it. Carers seek face-to-face guidance and sources of information.

“I Never Thought I’d See the Day That I Would Be Doing Things on Zoom”: Reimagining Day Care for Older People and Unpaid Carers in the Context of COVID‐19

This paper considers the role of collective forms of day care for older people and their carers during the enforced closure of services in 2020 due to COVID‐19. The study provides a unique opportunity to examine how the sector adapted to these unprecedented times. The paper draws on qualitative data collected from 8 case studies conducted in England, during which 120 interviews were held with older people, their carers, staff, and managers of services and local stakeholders. The findings demonstrate how day centres reimagined their services to meet the needs of older people and their carers in new and imaginative ways. They offer insights into the potential role day care centres could play in the new place‐based partnerships envisaged in recent legislation. The study provides an opportunity to consider the importance of day care services in the light of their enforced closure, providing a more nuanced understanding of day care provision. The impact of COVID‐19 on the social care sector meant that many day care centres were not fully operational and consequently the samples may not reflect the experiences of all centres.

Exploring gender disparities in unpaid household care labor: A mixed-methods study from rural South India

Background: Worldwide women spend 4.5 h daily on unpaid work while men spend about half of that time. Aims and Objectives: The aims and objectives of the study are to estimate the time spent by both men and women on the various types of unpaid care labor and to determine the economic estimates of unpaid labor. Materials and Methods: An embedded study (descriptive cross-sectional along with qualitative component) was conducted for a period of 3 months in 2020 in the rural area of a tertiary care medical institution in South India. 360 study participants of 15–60 years were recruited using simple random sampling and inquired for the time spent on care activities. Cumulative hours spent per year and its economic estimate was calculated using Oxfam global care calculator. Results: Female participants did significantly higher hours of unpaid care (3596.5 h) as compared to male participants (2938.3 h) (P &lt; 0.05). Economic estimates of unpaid care per year were significantly higher (INR 103641.8) for females as compared to males (INR 84610) (P &lt; 0.005). The reasons for gender-based disparity were patriarchy, perception of redundancy, male chauvinism, and absence of self-realization. Conclusion: The policymakers and administrators should develop policies which recognize, reduce, redistribute, and represent unpaid labor work.

Caring is not always sharing: A scoping review exploring how COVID-19 containment measures have impacted unpaid care work and mental health among women and men in Europe.

Unpaid care work is mainly performed by women, whose mental health is more affected by caregiving burden and work-family conflict compared to men. COVID-19 containment measures may have exacerbated existing gender inequalities in both unpaid care work and adverse mental health outcomes. This scoping review provides an overview of recent evidence on the impact of COVID-19 containment measures on unpaid care work and mental health for subgroups of caregivers at the intersection of gender and other social differences (e.g., ethnicity, age, class) in Europe. Our study was informed and guided by Arksey and O'Malley's methodological framework. We searched six academic databases (Medline, PsycInfo, Scopus, CINAHL, Social Sciences Abstracts, Sociological Abstracts, ASSIA) and hand-searched the reference lists of selected articles to identify relevant peer-reviewed research articles published between 1 March 2020 and 7 September 2022. In addition, we conducted a grey literature search using Google Scholar and a targeted hand search on known international and European websites. We included studies that reported gender-disaggregated results on unpaid care work and mental health in the context of COVID-19 containment measures in Europe. Two reviewers independently screened all abstracts and full texts for eligibility and extracted the relevant data. The results were synthesised narratively. Our results suggest a greater gender gap in unpaid care work division and, to a lesser extent, in mental health, which is unfavourable towards women and mothers. Despite this, we see a break in the traditional division of childcare, with fathers taking on a greater role in family work, which makes us optimistic about the division of care work in the post-COVID-19 era. This research also shows that among European women, population groups often understudied, such as women who are single parents, disabled or of colour, have the highest increase in unpaid care work and greatest deterioration in wellbeing.

La feminización de la sobrecarga: cuidados no- remunerados, relaciones familiares y envejecimiento en Peñalolén (Chile)

This article presents an anthropological study with a feminist focus on the unpaid care work done by older people in the district of Peñalolén (Metropolitan Region, Chile). Thirty-two qualitative interviews were conducted with men and women aged sixty and over with the aim of finding out what chores they do when looking after, in particular, their familiy members. The findings show that older women have an overload when it comes to care work and that their activities sustain different aspects of their relatives’ lives. These women appear to be caught “in the middle,” trapped between different generations and distinct ways of doing paid and unpaid work. At the same time, older men tend only to take on care work when their partner is not in a position to do so; rather, they undertake more specific ways of providing (such as offering material and economic resources to their children and grandchildren).

A pilot study to establish feasibility and acceptability of a yoga and self-management education intervention to support caregivers and care receivers with persistent pain.

Approximately 75% of caregivers providing unpaid care to family members or friends experience persistent pain. Simultaneously, individuals who require caregiving commonly experience pain. The inherent complexity of pain is enhanced by relationship dynamics of two closely tied individuals (i.e., caregiving dyad = caregivers and care recipients). Currently there are no proven pain interventions that target the caregiving dyad. Thus, the purpose of this pilot study was to assess the feasibility of a new behavioral multi-modal intervention, the Merging Yoga and self-management to develop Skills (MY-Skills) intervention. Each participant was part of a caregiving dyad and all participants had moderate to severe musculoskeletal pain, a score of ≥4 of 6 on the short mini-mental status exam, were ≥18 years old, sedentary, able to speak English, able to stand, and living at home. Participants were randomized to MY-Skills or the control group. MY-Skills was offered twice a week for eight weeks and each two-hour session included yoga and self-management education developed specifically for caregiving dyads experiencing persistent pain. MY-Skills was group based and developed as an in-person intervention. Due to Covid-19, the intervention was moved online and data are presented for in-person and online cohorts. Benchmarks for feasibility were set a priori, addressing: recruitment, attrition, attendance, safety, acceptability/satisfaction, and study completion. Thirteen participants completed the in-person MY-Skills intervention (caregivers n = 7, care-receivers n = 6) and 18 individuals completed the online MY-Skills intervention (9 dyads). Most participants had pain for ≥10 years. Recruitment and attrition benchmarks for the in-person intervention were not met; yet they were met for the online version. In-person and online MY-Skills intervention attendance, safety, acceptability/satisfaction, and completion exceeded benchmark criteria. The MY-Skills intervention appears feasible and acceptable, however changes to recruitment criteria are necessary. Additional testing and larger sample sizes are required to test efficacy. Clinicaltrials.gov, #NCT03440320.

The effect of informal caring on mental health among adolescents and young adults in Australia: a population-based longitudinal study

Young carers are people aged up to 25 years who provide unpaid care to a relative or a friend living with a long-term condition or a disability. Providing informal care is associated with poor mental health. Longitudinal evidence on this relationship among young people is scarce. To address this gap, we assessed the mental health of people aged 15-25 years when providing informal care compared with when not providing informal care. We conducted a population-based longitudinal study using 20 years of data between 2001 and 2020 from the Household Income and Labour Dynamics in Australia (HILDA) survey. We included observations of participants aged 15-25 years with at least two observations across 20 waves of HILDA. Informal care was categorised as 0 h per week, 1-19 h per week, and 20 or more h per week. Mental health was measured using the Mental Health Inventory (MHI-5) from the 36-Item Short Form Survey (SF-36). Multivariate linear fixed-effects regression models were fitted to assess within-person changes in mental health when providing different levels of informal care. Of 44 663 people with 410 658 observations who participated in HILDA waves 1 to 20, 32 726 were excluded with 351 445 observations. 11 937 young people (with 59 213 observations) were deemed eligible for this study and, of these, 8996 participants with 43 231 observations were included in the complete case analytical sample. When caring for 1-19 h per week, young carers had an MHI-5 score of -1·98 points (95% CI -3·06 to -0·89) compared with when caring for 0 h per week. Mental health was worse when caring for 20 or more h per week, with participants displaying an MHI-5 score of -3·47 points (95% CI -6·02 to -0·92) compared with when caring for 0 h per week. Our findings were consistent across sensitivity tests. Our findings suggest potential mental health effects of informal care in young people, particularly when providing an intense amount of caregiving. Reducing young caring loads could be a possible avenue for intervention. Melbourne Disability Institute Scholarship, University of Melbourne Research Training Program Scholarship, Australian Research Council Discovery Early Career Researcher Award, National Health and Medical Research Council of Australia funded Centre of Research Excellence in Disability and Health.