The high cost of unpaid care by young people:health and economic impacts of providing unpaid care

Abstract

Background: Many countries worldwide have experienced reductions in provision of formal long-term care services amidst rising need for care. Provision of unpaid care, meanwhile, has grown. This includes care provided by young people. Care responsibilities can affect a young people's health, education and employment. We aimed to investigate the impacts on the employment and health of young people aged 16 to 25 of providing care, and the associated individual and public expenditure costs. Methods: We examined employment, earnings and health impacts for individuals, and a range of economic impacts for society, focusing on young people aged 16 to 25 providing unpaid care in England. We applied regression analysis to data from three waves of the UK Household Longitudinal Study (2013/2015, 2014/2016, and 2015/2017) to compare employment and health outcomes among carers and non-carers, and two-part Generalised Linear Models to estimate costs. To address potential selection bias, we then used propensity score matching methods to explore outcomes for a matched sub-sample of young adult carers who started providing care at baseline (2014/16). Results: Young people aged 16 to 25 who provided care at baseline (2014/16) were less likely to be in employment, had lower earnings from paid employment, and had poorer mental and physical health at follow-up (2015/17) compared to young people of the same age who were not providing care at baseline.. There were substantial costs to the state of young adults providing care from lower tax revenue, welfare benefit payments, and health service use. In aggregate, these costs amounted to £1048 million annually in 2017. Conclusions: High individual impacts and costs to the state of providing unpaid care, and the potential of such impacts to compound existing inequalities, have many implications for policy and practice in the health, social care, employment and welfare benefits sectors. In particular, the findings reinforce the case for reducing the need for young people to provide unpaid care, for example through better provision of formal care services, and to provide ongoing support for those young people who do provide care. As impacts are seen in a number of domains, support needs to be multidimensional.

The power of informal cancer caregivers’ writings: results from a thematic and narrative analysis

“…Some studies have shown that ICs' social support varies in quality or effectiveness [6], but this may be a coping response that helps ease the emotional and practical burden of the cancer disease experience [7]. However, ICs' interventions do differ because they have individual differences in skills, motivation, and ability to overcome the difficult situations associated with cancer care [8], and different authors who have considered caregiving a full-time job that imposes a significant burden of responsibility [2,7,9,10] have investigated the high cost of informal care [11] and the need to involve these caregivers in the healthcare team from the moment of diagnosis [5,12]. Applebaum and Breitbart [2] described the caregivers' burden as a "…multidimensional biopsychosocial reaction resulting from an imbalance of care demands relative to caregivers' personal time, social roles, physical and emotional states, financial resources, and formal care resources given the other multiple roles they fulfill" that leads to physical and emotional demands, fear, hopelessness, mood disturbances, anxiety, and in some cases, even depression.…”

What can the experiences of young adult carers tell us about what can make services more helpful for them and their families?

“…Young adult carers, generally defined in the literature as aged 16-25, have poorer outcomes than their peers in terms of their education, employment, mental health and wellbeing (Office for National Statistics 2013; National Union of Students 2014; Brimblecombe, Knapp, et al 2020). Our previous survey research, for example, found 41% of young adult carers had symptoms of anxiety and depression (Brimblecombe, Stevens, et al 2020).…”

Promoting Mental Health and Well-Being among Adolescent Young Carers in Europe: A Randomized Controlled Trial Protocol

“…AYCs are at risk of adverse mental, social and educational outcomes that may continue into adulthood implying reduced psychosocial adjustment [5,[9][10][11][18][19][20]24,25]. A primary prevention model has been recommended to mitigate against negative outcomes and foster transitions to adulthood [18,[38][39][40].…”

“…Taking on care responsibilities early in life may have considerable negative consequences for young people's mental and physical health and psychosocial development [4][5][6][7][8][9]. Caring has especially been linked to stress, anxiety and depression symptoms when occurring in the adolescent phase [10,11], which is remarkable given evidence that most mental health problems that start during adolescence subsequently persist into adulthood [12].…”

“…Risk factors that have been reported to affect physical and mental health outcomes of adolescent YCs (AYCs) include being female or non-binary and having a migration background [8,13], living with care recipients [8], the extent (i.e., greater amount of time) [13][14][15] and nature (i.e., personal and emotional care, financial and practical management) [7,14] of caring activities and food insecurity [16,17]. AYCs are also likely to face difficulties in education that negatively impact future employability, career aspirations and socioeconomic status [5,[18][19][20]. Among risk factors for educational outcomes, more hours of care provided and caring for someone with a mental illness or using alcohol/drugs have been associated with lower emotional engagement (i.e., positive attitudes to teachers, classmates, schoolwork and the school environment) and greater problems with school in terms of both attendance and performance [21][22][23].…”