Lost in translation? The challenges of measuring informal care among children and young people

Abstract

According to data in the UK Census of Population, the number of young carers aged between 5 and 17 years old increased substantially between 2001 and 2011. By 2011, 2.1% of young people aged 5 to 17 years in England and Wales were young carers (ONS, 2013). The comparative figure for Scotland was 2% (NRS, 2011), while for Northern Ireland it was 2.8% (NISRA, 2011). Prevalence estimates for young carers vary widely across different surveys, however, for several reasons. The first main issue relates to question wording, such as, 'is the question easy to understand?' and 'does the question use child-friendly language?'. Secondly, survey design and implementation is important, as different modes of administration (online, paper, face-to-face), as well as who completes the questionnaire, will impact on responses. It is also important to consider attitudes and norms among young people and their family members. Some young people may consider their activities and responsibilities to be 'caring', while others see them as a normal part of family life. In particular, these attitudes can be affected by a fear of intervention by the state if the child's or young person's caring role is identified. Nevertheless, despite these limitations, where standard questions and administration are used, surveys can successfully capture real variations, such as those between different age groups or in different regions. One possible epistemological issue, and the subject of this paper, is that questions in different surveys are not all capturing the same thing. In other words, they reflect different conceptualisations of what it means to be a young carer. Thus, prevalence estimates across different surveys are often not comparing like with like. The aim of this paper is to explore the association between prevalence estimates and question wording. We do this by identifying survey instruments that provide prevalence estimates in the United Kingdom, and further afield, and comparing their definitions, question wording, and prevalence estimates. We then report on a small, qualitative, study in Northern Ireland, based on the Young Life and Times survey of 16 year olds, and the Kids' Life and Times survey of 10-11 year olds, which focused on the difficulties involved in estimating young carer prevalence rates, and the wide variations in these rates arising from the method of data collection. The particular methodological challenges the study faced, and the approach taken to confront these complexities, are set out. The outcome is used to inform future plans for research in this area. Definitions of a 'young carer' Within the UK, definitions of who is a young carer have changed over the past 20 years, mostly as a consequence of specialist practitioner efforts to improve how young carers are identified, and in response to new legislation in England which imposes statutory duties on local authorities to provide support for young carers (Wayman et al, 2016). Definitions have latterly become more inclusive and specific, incorporating greater coverage ...

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“…For instance, the 2016 Australia Census found that 5.6% of those aged 15–24 years reported informal care, a slight increase from 5.0% in 2006. These few studies are based on census data from only two time-points, with statistics that might rely on parents’ disclosure of the caregiving role of their children which can underestimate care prevalence among young people [ 17 , 18 ]. Therefore, to date, no studies have provided an overview of the annual prevalence of caregiving among young people over several years using a survey which, by design, collects information on different aspects of participants’ lives directly from each participant.…”

Outcomes for children who care for a parent with a severe illness or substance abuse

“…However, studies of prevalence often use various definitions of young carers, age ranges, samples, methods of research and instruments to measure outcomes (Aldridge, 2017;Kavanaugh et al, 2016;Stamatopoulos, 2015). Therefore, reliable cross-national prevalence and outcome data are rare (Aldridge, 2017;Kelly, Devine, & McKnight, 2017;Leu & Becker, 2016).…”

Young adult carers in the UK – New evidence from the UK Household Longitudinal Study

“…For instance, the 2016 Australia Census found that 5.6% of those aged 15-24 years reported informal care, a slight increase from 5.0% in 2006. These few studies are based on census data from only two time-points, with statistics that might rely on parents' disclosure of the caregiving role of their children which can underestimate care prevalence among young people (Kelly, Devine and McKnight 2017;. Therefore, to date, no studies have provided an overview of the annual prevalence of caregiving among young people over several years using a survey which, by design, collects information on different aspects of participants' lives directly from each participant.…”