Young carers: review of research and data

Annex 1: Background Information

The overall estimate of young carers used in this report is from the Scottish Health Survey ( SHeS) and detailed analysis is based on the Scotland's Census 2011. These are considered the most accurate data available for carers in 2012/13. The surveys include the same question that has been developed to help people identify that they are providing a caring role, even when they do not think of themselves as "carers". The question wording in both SHeS and the Census is: "looks after or gives any help or support to family members, friends, neighbours or others because of either long-term physical / mental ill-health /disability; or problems related to old age"

Table 3: Estimated number of young carers in Scotland - Census and SheS

For the first time in 2012/2013, the SHeS collated data on young carers. SHeS shows that 7% of people aged 4-24 provide unpaid care. This is the best overall estimate of young carers in Scotland.

There are an estimated 93,000 carers aged 4-24 (7%) in Scotland according to the SHeS. This comprises:

• 29,000 carers aged 4-15 (95% confidence limits: 22,000-36,000)
• 64,000 carers aged 16-24 (95% confidence limits: 46,000-81,000)

According to Scotland's 2011 Census, almost 3% of young people aged 0-24 provide unpaid care, however the Census is thought to underestimate caring, particularly the extent of low level caring. Both sources provide similar results when looking at carers who do substantial amounts of caring each week. However, because of the large numbers in Scotland's Census, it is the best source for detailed data on the profile of young and young adult carers and the care provided.

It is useful to understand why the figures from the SHeS and Scotland's Census differ. Scotland's 2011 Census and the 2012/2013 SHeS ask identical questions so it might be reasonable to expect a similar response.

There are a number of reasons why these differences may occur:

• In SHeS each young person aged 13-15 is personally asked the carers question as well as the adult in the household. They speak directly to the interviewer and say whether they provide care and how many hours a week.
• The SHeS has an additional category asking if people provide care for up to 4 hours each week whereas the first category in Scotland's 2011 Census is "up to 19 hours of care" a week. It may be that the large number of hours in the Census category deters people who only provide a small amount of care from answering.
• Because SHeS is an interview survey it allows the respondent to ask for clarification if they don't understand the question. There is not this opportunity with a postal survey.
• The SHeS question is asked as part of a detailed health survey and follows a block of questions about long-term conditions which means that people will be thinking more about health and care issues when they answer the question.

For all of these reasons, the Scottish Health Survey is considered to provide the best estimate of the overall number of carers in Scotland at present. However the numbers of young carers and young adult carers in the SHeS are too few for meaningful analysis of sub-groups. Scotland's Census 2011, as a survey of the whole population, allows for analysis of the profile of young carers and young adult carers and analysis at local authority level.

The data suggests that as children become older, more young people provide a few hours caring. This was concluded by comparing the findings from Scotland's Census and SHeS. Overall the profile of young carers in both is similar; the highest proportion of young carers are aged 13-15; those aged 4-6, comprise 4% of carers and those aged 7-9 are similar percentages as 14% (Scotland's 2011 Census) and 12% ( SHeS).

There are larger differences at ages 10-12, 23% of young carers are this age according to the SHeS; compared to 30% in Scotland's 2011 Census. This reverses at ages 13-15 where the SHeS, that identifies more carers providing fewer hours, finds a higher proportion of young carers than the Census (63% compared to 53%).

Table 4: Age distribution of young carers - Census and SHeS

The evidence base

The concept of young caring has only relatively recently been recognised and accepted as a social issue (Sahoo & Suar, 2010, p. 134). There was a development of interest during the 1990s (Olsen, 1996, p. 41) where the formation of the Young Carers Research Group at Loughborough University was particularly influential in this movement. Young Carer research has broadened somewhat since the 1990s and is increasingly found in different pockets of literature.

A systematic approach was adopted to review the literature at the outset in order to generate a comprehensive account of the literature. To seek out studies relevant to the scope and purpose of the review, five databases were searched using keywords for material published between 1995 and 2015. Articles were scrutinised and narrowed down using inclusion/exclusion criteria mainly based on their relevance and quality. The articles located were used as the key sources of information to inform this literature review (see Bibliography for the articles identified through this process). After this point, reference lists of key articles were surveyed to obtain further literature relevant to the project.