A school-based cross-sectional study to understand the public health measures needed to improve the emotional and mental wellbeing of young carers aged 12 to 14 years

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  • 1 Cornwall Council and University of Exeter Medical School, , UK
  • | 2 Cornwall Council, , UK
  • | 3 University of St Andrews, , UK
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The emotional and mental wellbeing of young carers is known to be poorer than their peers. Data from a large cross-sectional school survey of 7,477 12 to 14 year olds (72 per cent response rate) living in Cornwall, South West of England, were analysed to assess whether existing school-based interventions support the wellbeing of young carers. Outcome measures were derived from the Short Warwick-Edinburgh Mental Wellbeing Scale and the Strengths and Difficulties Questionnaire. Young carers experienced greater emotional and mental wellbeing problems than their peers. Being eligible for free school meals did not attenuate these higher needs, indicating that broader support other than financial measures are needed, such as education, health and care plans which were associated with higher mental wellbeing among young carers. Early community and school-based interventions that consider the complex needs of young carers, especially emotional wellbeing, are needed.

Abstract

The emotional and mental wellbeing of young carers is known to be poorer than their peers. Data from a large cross-sectional school survey of 7,477 12 to 14 year olds (72 per cent response rate) living in Cornwall, South West of England, were analysed to assess whether existing school-based interventions support the wellbeing of young carers. Outcome measures were derived from the Short Warwick-Edinburgh Mental Wellbeing Scale and the Strengths and Difficulties Questionnaire. Young carers experienced greater emotional and mental wellbeing problems than their peers. Being eligible for free school meals did not attenuate these higher needs, indicating that broader support other than financial measures are needed, such as education, health and care plans which were associated with higher mental wellbeing among young carers. Early community and school-based interventions that consider the complex needs of young carers, especially emotional wellbeing, are needed.

Introduction

The prevalence of poor mental and emotional wellbeing among children and adolescents is increasing in high-income countries (Inchley et al, 2020). The Children’s Society (2018) has described young people’s wellbeing as one of the greatest health inequalities across England. One group of young people at high risk of poorer mental and emotional wellbeing are young carers (ONS, 2013a). Over the past 20 years the body of evidence on the impacts of caring on young people’s wellbeing has been growing, identifying beneficial as well as detrimental effects (Cree, 2003; Abraham and Aldridge, 2010; Lloyd, 2013; Järkestig-Berggren et al, 2019; Choudhury and Williams, 2020; Hamilton and Redmond, 2020; Robison et al, 2020). Health and education services may not be aware when a young person adopts caring responsibilities and therefore much research has focused on describing the population of young carers. But recently, Joseph et al (2020) have argued that research now needs to focus on how to address the needs of young carers rather than additional epidemiological data.

In the UK, the Children and Families Act 2014 defines a young carer as a young person aged under 18 years who provides or intends to provide care for another person. However, definitions vary between countries and studies, resulting in estimates of the proportion of young carers varying from 2 per cent in the UK to up to 50 per cent in one Canadian study (ONS, 2013b; Areguy et al, 2019). Joseph et al (2020) in their overview of studies concluded that 2–8 per cent of children and adolescents are young carers. Some definitions specify what types of conditions the person being cared for has, while others focus on the nature of the caring responsibilities (Hamilton and Redmond, 2020, Robison et al, 2020). It is rare for definitions to specify the degree of responsibility a young person must have in order to be considered a carer. However, one common thread in most definitions is the recognition of the additional responsibilities young carers have (Cree, 2003). These additional responsibilities are thought to lead to both the beneficial and detrimental impacts of caring. Cree (2003) describe three areas of concern for young carers that affect their wellbeing: worry about the person being cared for, worry about the impact of the person’s illness on the family, and worry about the impact on their own current and future lives. These anxieties include worrying about who will care for the young person themselves, which ties into worries about the potential consequences of involving social services if they disclose their caring status, also thought to contribute to underreporting (Becker and Becker, 2008; Richardson et al, 2009; Smyth et al, 2011; DfE, 2016).

In their efforts to support young carers, there is a need among the support services to recognise the benefits of the additional responsibilities while mitigating their detrimental impacts. Wind and Jorgensen (2020: 100) found the Danish Buddy respite programme to be beneficial for young carers in Denmark, noting ‘the importance of fun and cosy activities that provide children with respite from the serious concerns that otherwise fill the lives of young carers’. Abraham and Aldridge (2010) recommended that educators needed training in how to identify young carers. However, might existing school-based support services already be supporting young carers?

A systematic review by Cohen et al (2021) found the universal provision of school meals to be linked to a number of beneficial outcomes, including education (for example, participation and academic performance) and health (for example, diet quality and body mass index). While, in the UK, the provision of school meals dates back to the late 19th and early 20th centuries when it was recognised that hunger was preventing children from benefiting from their education, today most children in statutory education only receive free school meals (FSM) if their parent or carer is in receipt of certain social security benefits (Harris, 1995; Cornwall Council, 2021). Alongside the nutritional value, FSM policies have been recognised as relieving some of the financial stress on families, with the interruption to the provision of meals while school buildings were closed during the COVID-19 pandemic attracting widespread criticism of the UK government (Beaton et al, 2014; Shields, 2021). A more recent policy development has been the introduction of education, health and care plans (EHCPs) in 2014 (Gov.uk, n.d.). EHCPs ‘identify educational, health and social needs and set out the additional support to meet those needs’, which can include financial and non-financial support (Gov.uk, n.d.). When an EHCP is requested an assessment is undertaken of the child’s educational, health and social needs, including reports from relevant professionals in order to determine eligibility for a plan (Gov.uk, n.d.). Some young carers will be eligible for FSMs and/or EHCPs while others will not, providing an opportunity to examine whether these policies support young carer wellbeing.

In the UK, the five-year HeadStart project ‘aims to explore and test new ways to improve the mental health and wellbeing of young people aged 10 to 16 and prevent serious mental health issues from developing’ (University College London, 2021). The inclusion of the county of Cornwall in South West England as one of the six HeadStart sites meant that unique data were available to explore the potential impacts of existing school-based interventions on young carers. Subsequently, we undertook a secondary data study with the aims of characterising the emotional and mental wellbeing of young carers in Cornwall and exploring whether FSMs or EHCPs were associated with better wellbeing among young carers.

Method

In Cornwall, all mainstream schools and alternative provision academies are participating in the HeadStart programme (29,027 pupils), which began in 2017 (HeadStart Kernow, 2021). All year 8 and 9 pupils (aged 12–14 years) in Cornwall were asked by school staff to complete the Wellbeing Measurement Framework (WMF) online survey between March and May 2018 (Deighton et al, 2019). The WMF is a longitudinal study, started in 2017, surveying year 7 pupils (aged 11–12 years) and following them for five years with a fixed-age comparison study surveying year 9 pupils (aged 13–14 years) each year. The surveys were designed to be completed during school time by pupils aged between 11 and 16 years of age. It is a self-report survey, which recorded gender, the year group of each pupil and whether they were a young carer. This was defined as ‘children and young people under 18 who provide regular or ongoing care to a family member who has an illness, disability, mental health condition or drug/alcohol dependency’ (Child Outcomes Research Consortium, 2017). Based on this definition, the questionnaire asked participants, ‘Are you or have you ever been a young carer?’, information that Cornwall Council was not systematically collecting in any other form. Existing instruments that are reliable, valid and sensitive to change were used as part of the WMF to measure pupils’ emotional and mental wellbeing (Goodman et al, 1998; Goodman, 2001; Tennant et al, 2007; Stewart-Brown et al, 2009).

Schools were provided with guidance on how to administer the survey, which was made available to them from the HeadStart Learning Team (n.d.). This comprised an introductory film for teachers and pupils and a crib sheet for teachers. The crib sheet contained:

  • Text for the teachers to read out to pupils to explain that the answers would be kept confidential by the people running the survey and that teachers and parents would not see their answers.

  • Practical guidance on how to administer the survey, including the amount of time it would take to complete, suggestions on activities for early finishers, how to support children to understand the words and concepts, and how to help pupils with reading difficulties or special educational needs.

  • Frequently asked questions in order that teachers had pre-prepared answers to questions from pupils.

  • A glossary of terms.

The WMF was completed on school IT equipment during a lesson with a teacher present. Each pupil was given a unique log-in and, having logged in, each pupil was reminded about who would have access to their data and asked to consent to participate. Within the survey, pop-outs were available to explain what terms meant. The learning derived from this method of data collection was developed into a case study on how to get a good response rate when assessing wellbeing in schools (EBPU, 2018).

To assess the emotional and mental wellbeing of pupils, the WMF asked each pupil to complete questions set out by the self-completed Short Warwick-Edinburgh Mental Wellbeing Scale (SWEMWBS) (Tennant et al, 2007; Stewart-Brown et al, 2009; Hughes et al, 2016) and the Strengths and Difficulties Questionnaire (SDQ) (Goodman et al, 1998; Goodman, 2001; Deighton et al, 2019). These are validated and widely used survey instruments; the seven SWEMWBS items are used to calculate a mental wellbeing score (Tennant et al, 2007; Stewart-Brown et al, 2009), whereas the 25 SDQ items are used to calculate four problem scales: emotional symptoms, conduct problems, hyperactivity/inattention, and peer relationship problems, which are combined to produce a total difficulties score and a single strength scale: prosocial behaviour (Goodman et al, 1998; Goodman, 2001). The WMF data were cleaned and processed by the University of Manchester HeadStart team before the dataset was provided to Cornwall Council. Both SWEMWBS and SDQ have previously been used in studies of young carer wellbeing (Abraham and Aldridge, 2010; Järkestig-Berggren et al, 2019; Robison et al, 2020). SWEMWBS mental wellbeing score was our measure of mental wellbeing with higher scores representing higher positive mental wellbeing (Tennant et al, 2007; Stewart-Brown et al, 2009). Our primary measure of emotional wellbeing was the SDQ total difficulties score with higher scores representing lower positive emotional wellbeing (Goodman et al, 1998; Goodman, 2001). To obtain data on whether each child was eligible for FSM or had an EHCP, Cornwall Council and the HeadStart team worked together to securely link the WMF data with locally available data held by the Performance Data team (Together for Families) using unique pupil numbers (Supplementary material 1) (EBPU, n.d.).

Ethical approval for the HeadStart programme was granted by University College London in November 2017 (reference 8097/003) (Deighton et al, 2019). With the HeadStart study commencing before the General Data Protection Regulation was introduced in 2018 an opt-out process was granted ethical approval. Parents/carers and children who assented to participate were provided with information sheets and were able to log in to complete the survey online. Only one wave of WMF data was analysed to minimise the risk of contamination by any interventions introduced through the HeadStart study. In Cornwall, 10,345 children from years 8 and 9 were asked to participate in the WMF in 2018.

Statistical analysis plan

Due to the cross-sectional nature of the sample, we conducted complete case analyses. The sample was first divided into those who did and did not identify as young carers. Each group was characterised according to the following characteristics: age, gender, ethnicity, English as an additional language (EAL), whether a pupil was considered as young for their year group (that is, born during the summer months of May, June, July, and August), socioeconomic status of home address, mental wellbeing (SWEMWBS mental wellbeing score), emotional wellbeing (SDQ total difficulties score), FSM eligibility and EHCP status. Both SWEMWBS mental wellbeing score and SDQ total difficulties score as the primary dependent variables were assessed as being normally distributed.

Using continuous outcomes measures (raw SWEMWBS mental wellbeing and SDQ total difficulties scores), multilevel univariable and multivariable (adjusted for gender, ethnicity, summer born and deprivation) regression models were then used to assess the adjusted impact of being a young carer on emotional and mental wellbeing. The three-level multilevel models accounted for the potential for clustering within schools and year groups (Deighton et al, 2019). The first models used the SWEMWBS mental wellbeing score and SDQ total difficulties score to assess the mental and emotional wellbeing of young carers, respectively. To explore this further, we separately assessed the emotional wellbeing of young carers using the four SDQ problem scales (emotional symptoms, conduct problems, hyperactivity/inattention, and peer relationship problems), and the single strength scale (prosocial behaviour). Finally, we tested the interaction between caring and EHCP or FSM in the SWEMWBS mental wellbeing score and SDQ total difficulties score multilevel models to examine any potentially protective associations with the emotional and mental wellbeing of young carers. We also tested the interaction between caring and deprivation (living in the lowest 20 per cent deprived neighbourhoods) to assess whether this carried any additional impact. All statistical analyses were carried out in Stata version 15.0 (College Station, US), and all statistical tests undertaken were two-tailed with α=0.05.

Results

In Cornwall, 8,865 children from year 8 (4,627) and 9 (4,238) responded (response rate of 85 per cent) to the WMF survey, which makes up nearly a third of the national HeadStart sample (Deighton et al, 2019). No data are available on non-respondents, thereby preventing comparisons. Complete data for this study were only available for 7,477 (72 per cent) pupils. The demographics of those with missing data differed in terms of gender, deprivation, level of support, being a young carer, and mental and emotional wellbeing (Table 1). Notably, the complete cases included fewer male pupils and pupils living in more deprived areas.

Table 1:

Sample characteristics

Complete (n=7,477)Missing (n=1,332)p-value*Carer (n=1,037)Non-carers (n=6,440)p-value*
GenderFemale50.5%42.0%<0.0150.4%50.6%0.94
Summer born33.4%37.2%0.0134.8%33.2%0.37
EthnicityWhite British92.9%91.0%0.0293.0%92.9%0.90
English as an additional language1.9%1.7%0.561.7%1.9%0.65
Index of Multiple Deprivation (IMD) decile of home postcode15.2%8.2%<0.018.5%4.7%<0.01
27.9%11.3%12.3%7.2%
315.4%15.9%16.4%15.2%
426.7%26.6%26.6%26.7%
521.2%16.8%16.2%22.0%
610.6%10.0%9.9%10.7%
77.6%6.5%6.5%7.8%
84.7%4.0%3.8%4.9%
90.7%0.8%0.4%0.8%
10<0.1%0.0%0.0%<0.1%
20% most deprived IMD13.1%19.6%<0.0120.8%11.9%<0.01
Free school meals21.0%28.1%<0.0138.1%18.2%<0.01
Education, Health and Care Plan10.1%20.5%<0.0116.2%9.1%<0.01
Carer13.9%18.8%<0.01---
Short Warwick Edinburgh Mental Wellbeing Scale mental wellbeing score23.7±5.322.7±6.0<0.0122.5±5.623.9±5.2<0.01
Strengths and Difficulties Questionnaire total difficulties score13.5±6.414.9±6.5<0.0116.2±6.513.0±6.3<0.01

Two-tailed t-tests for continuous measures and chi-squared test for categorical measures

Of the sample with complete data, there were 1,037 pupils (13.9 per cent) who said they were or had ever been a young carer (Table 1). In terms of their demographic profile, young carers were similar to their peers, in terms of gender, ethnicity, the proportion of summer births and EAL pupils. More young carers had an EHCP (16.2 per cent versus 9.1 per cent, p<0.001), were eligible for FSM (38.1 per cent versus 18.2 per cent, p<0.001) and lived in more deprived neighbourhoods (20.8 per cent versus 11.9 per cent, p<0.001).

Young carer wellbeing and school-based interventions

Young carers mean mental wellbeing score was 22.5 (standard deviation (SD) 5.6), significantly lower than their peers (mean 23.9, SD 5.2, t(7,475)=8.00, p<0.001) (Table 1). In terms of SDQ, young carers had a higher total difficulties score (mean 16.2, SD 6.55) than their peers (mean 13.0, SD 6.3, t(4,475)=–15.16, p<0.001) (Table 1). Among young carers the pairwise correlation between mental and emotional wellbeing was –0.51, compared to –0.60 among those without caring responsibilities. The proportion of the variation in emotional and mental wellbeing attributable to differences between year groups and schools among carers and non-carers was <2 per cent.

In the regression analyses, children who have caring responsibilities were found to have a lower mental wellbeing score (–1.39, 95 per cent confidence interval –1.72 to –1.04) and higher total difficulties score (3.16, 95 per cent confidence interval 2.74 to 3.57) than their peers without caring responsibilities (Table 2). The magnitude and statistical significance of these associations did not alter markedly following adjustment for gender, season of birth, ethnicity and area deprivation (Table 2). Examining the four problem domains and single strength domain of the SDQ separately found that being a young carer was statistically significantly associated with higher scores in each problem domain, but a non-significantly higher score on the prosocial behaviour strength domain (Table 3).

Table 2:

Unadjusted and adjusted multilevel regression estimates of the determinants of mental wellbeing (SWEMWBS mental wellbeing score) and emotional wellbeing (SDQ total difficulties score)

UnadjustedPartially adjusted modelFully adjusted model
Coefficient95% CICoefficient95% CICoefficient95% CI
Mental Wellbeing (SWEMWBS mental wellbeing score)
Gender (male)1.251.01 to 1.481.241.00 to 1.481.291.05 to 1.53
Summer born–0.07–0.32 to 0.19–0.03–0.28 to 0.22–0.01–0.26 to 0.24
Ethnicity (not White British)–0.37–0.84 to 0.09–0.40–0.87 to 0.06–0.39–0.91 to 0.13
English as an additional language–0.52–0.36 to 1.390.01–0.96 to 0.99
20% most deprived IMD–0.72–1.09 to –0.35–0.58–0.94 to –0.21–0.28–0.65 to 0.09
Free school meals–1.68–1.97 to –1.38–1.38–1.68 to –1.08
Education, Health and Care Plan–0.95–1.35 to –0.55–0.86–1.26 to –0.45
Carer–1.39–1.72 to –1.04–1.34–1.69 to –1.00–1.04–1.38 to –0.69
Intercept23.6623.14 to 24.1823.9223.35 to 24.49
Emotional Wellbeing (SDQ total difficulties score)
Gender (male)–0.93–1.22 to –0.64–0.91–1.20 to –0.63–1.07–1.35 to –0.79
Summer born0.29–0.02 to 0.590.24–0.06 to 0.550.19–0.11 to 0.48
Ethnicity (not White British)0.18–0.39 to 0.740.24–0.32 to 0.79–0.11–0.72 to 0.51
English as an additional language–1.36–2.42 to –0.30–1.27–2.43 to –0.11
20% most deprived IMD1.461.01 to 1.901.160.72 to 1.600.73–0.29 to 1.17
Free school meals2.532.18 to 2.881.801.44 to 2.15
Education, Health and Care Plan2.812.33 to 3.292.411.93 to 2.89
Carer3.162.74 to 3.573.062.65 to 3.472.562.15 to 2.98
Intercept--13.1112.48 to 13.7313.0513.37 to 13.73

IMD; Index of multiple deprivation, 95% CI; 95% confidence interval of the coefficient

Table 3:

Adjusted multilevel regression estimates of the determinants of the four problem and single strength scales of the Strengths and Difficulties Questionnaire (SDQ)

Problem scalesStrength scale
Emotional symptomsConduct problemsHyperactivity/ inattentionPeer-relationship problemsProsocial behaviour
Coef95% CICoef95% CICoef95% CICoef95% CICoef95% CI
Gender (male)–1.74–1.85 to –1.630.430.34 to 0.510.310.20 to 0.420.090.01 to 0.18–0.98–1.06 to –0.89
Summer born0.07–0.05 to 0.19–0.01–0.10 to 0.080.08–0.04 to 0.210.110.02 to 0.200.100.01 to 0.19
Ethnicity (not White British)0.13-0.09 to 0.34–0.07–0.24 to 0.100.19–0.03 to 0.41–0.01–0.17 to 0.150.09–0.08 to 0.26
20% most deprived IMD0.270.10 to 0.440.290.16 to 0.430.300.12 to 0.470.300.17 to 0.43–0.14–0.27 to <-0.01
Carer0.820.65 to 0.980.730.60 to 0.860.830.67 to 1.000.700.57 to 0.820.12-0.01 to 0.24
Intercept4.594.36 to 4.822.121.93 to 2.314.264.02 to 4.512.121.95 to 2.307.437.24 to 7.62

Coef: regression coefficient, IMD; Index of multiple deprivation, 95% CI; 95% confidence interval of the coefficient

The provision of FSM and/or EHCP are intended to help more vulnerable children in schools, which is consistent with the finding that eligibility for FSM and having an EHCP were both associated with poorer mental and emotional wellbeing in the unadjusted and adjusted analyses (Table 2). Additionally, adjusting for FSM and EHCP markedly attenuated the association between caring responsibilities and mental and emotional wellbeing (Table 2). While the coefficient of caring remained statistically significant in both the models of SWEMWBS mental wellbeing and SDQ total difficulties scores, adjusting for FSM and EHCP reduced the magnitude of both coefficients. The interactions between caring and FSM eligibility and having an EHCP in place tested whether these means of support were associated with differences in emotional and mental wellbeing (Table 4). The interactions between caring and FSM eligibility were not statistically significant for either mental or emotional wellbeing. However, the interactions between caring and having an EHCP was significant for mental wellbeing (1.01, 95 per cent confidence interval 0.04 to 1.97), but not emotional wellbeing. In each of these cases, the interaction coefficient was in the opposite direction to the coefficient for caring, which would suggest that the wellbeing outcomes were better for young carers with an EHCP. The interaction between living in one of the 20 per cent most deprived postcodes in England and being a young carer was also examined, as it was found that the proportion of young carers living in these areas was almost double the proportion of non-carers who lived in one of these areas (Table 1). Like FSM and EHCP, the coefficient of the interaction with caring was in the opposite directions to the coefficient for caring for both mental and emotional wellbeing (Table 4). This interaction was again only significant for mental (1.06, 95 per cent confidence interval 0.19 to 1.94) and not emotional wellbeing (Table 4).

Table 4:

Adjusted multilevel regression estimates of the determinants of mental wellbeing (SWEMWBS mental wellbeing score) and emotional wellbeing (SDQ total difficulties score) with interactions between caring and existing public health measures

Free school mealsEducation, Health and Care Plan20% most deprived IMD
Coefficient95% CICoefficient95% CICoefficient95% CI
Mental Wellbeing (SWEMWBS mental wellbeing score)
Gender (male)1.220.99 to 1.461.321.08 to 1.561.241.00 to 1.47
Summer born–0.03–0.28 to 0.22<–0.01–0.25 to 0.25–0.04–0.29 to 0.21
Ethnicity (not White British)–0.41–0.87 to 0.05–0.40–0.86 to 0.06–0.40–0.86 to 0.06
20% most deprived IMD–0.30–0.67 to 0.07–0.53–0.90 to –0.17–0.79–1.20 to –0.39
Free school meals–1.56–1.89 to –1.23
Education, Health and Care Plan–1.29–1.74 to –0.84
Carer–1.25–1.67 to -0.82–1.42–1.79 to –1.05–1.55–1.93 to –1.16
Interactions
 Carer eligible for free school meals0.49–0.24 to 1.22
 Carer with an Education, Health and Care Plan1.010.04 to 1.97
 Carer from 20% most deprived IMD1.060.19 to 1.94
Intercept23.9323.41 to 24.4523.7223.20 to 24.2423.6923.17 to 24.21
Emotional Wellbeing (SDQ total difficulties score)
Gender (male)-0.89–1.17 to –0.61–1.120.62 to 1.49–0.91–1.19 to –0.62
Summer born0.24–0.06 to 0.540.17–0.12 to 0.470.25–0.05 to 0.55
Ethnicity (not White British)0.24-0.31 to 0.790.21–0.34 to 0.760.23–0.32 to 0.79
20% most deprived IMD0.770.33 to 1.211.050.62 to 1.491.330.84 to 1.82
Free school meals2.151.75 to 2.55
Education, Health and Care Plan2.912.37 to 3.44
Carer2.912.40 to 3.423.022.57 to 3.463.222.76 to 3.68
Interactions
 Carer eligible for free school meals–0.63–1.50 to 0.25
 Carer with an Education, Health and Care Plan–0.97–2.12 to 0.19--
 Carer from 20% most deprived IMD–0.84–1.90 to 0.21
Intercept12.7412.12 to 13.3613.0012.38 to 13.6313.0912.46 to 13.71

IMD; Index of multiple deprivation, 95% CI; 95% confidence interval of the coefficient

Risk factors influencing the emotional and mental wellbeing of pupils

These findings need to be put into context with other risk factors influencing the emotional and mental wellbeing of children and young people within schools across Cornwall. In the fully adjusted models, boys were found to have a mental wellbeing score of 1.29 (95 per cent confidence interval 1.05 to 1.53) points higher than girls, which was also reflected with corresponding lower SDQ total difficulties score (–1.07, 95 per cent confidence interval –1.35 to –0.79) (Table 2). Neither minority ethnicity nor having English as an additional language was statistically significantly associated with emotional or mental wellbeing, although these populations are small in Cornwall (Tables 1 and 2). Nor was being born in May, June, July, or August (Table 2). Living in the 20 per cent most deprived neighbourhoods was associated with higher emotional and mental wellbeing needs unless models were adjusted for FSM eligibility and EHCP (Table 2). In comparisons with these wellbeing inequalities, it appears that the difference in mental wellbeing of young carers in Cornwall is similar to that of known gender and deprivation inequalities, however, the emotional wellbeing impact is bigger than that associated with these known inequalities.

Discussion

Young people with caring responsibilities in Cornwall were more vulnerable (for example, living in deprivation, eligible for FSM and had an EHCP) and were found to have reduced mental wellbeing and greater emotional difficulties than their peers. Young carers experienced increased emotional difficulties regardless of having an EHCP or being eligible for FSM. However, our findings may suggest that having an ECHP in place may support the mental wellbeing of young carers (Table 4). Beyond highlighting the need to understand the wider implications of being a young carer, our findings indicate that further research is needed to evaluate and potentially refine existing support systems for young carers, especially the emotional wellbeing of young carers.

Half of the sample across both year groups were female and the majority of pupils were white British, which is consistent with the demographic profile across the national sample. The proportion of young people in the HeadStart Kernow study who reported being a young carer was higher than most estimates at 13.9 per cent, although it was still within the range of estimates found in the literature (ONS 2013b; Areguy et al, 2019; Joseph et al, 2020). Studies in Northern Ireland and Glasgow both identified 12 per cent of adolescents as young carers (Lloyd, 2013; Robison et al, 2020). Notably, the higher prevalence in the HeadStart Kernow study might have arisen from the fact that the question asked about both current and previous young carer status. Our finding might highlight transient periods of caring among young people: for example, for a grandparent who has now died, or a parent with an addiction or mental health problem that has been treated (Wayman et al, 2016). The beneficial and detrimental impacts of caring are unlikely to be resolved quickly when the need for care stops and therefore future studies may want to seek out current and past carers (Lloyd, 2013; Robison et al, 2020).

Despite the lower levels of ethnic diversity in Cornwall, our findings are consistent with prior associations between gender, ethnicity, EHCPs, FSM and greater emotional difficulties among young carers (Deighton et al, 2019; Järkestig-Berggren et al, 2019; Choudhury and Williams, 2020). Previously, Choudhury and Williams (2020) had identified EHCPs as an important source of support for young carers. However, eligibility for an EHCP is assessed against a number of criteria (Gov.uk, n.d.) which a number of the young carers in the Choudhury and Williams (2020) study had not met. In the current study, 16.2 per cent of the young carers had an EHCP (Table 1); we do not have information on whether any of the young carers without an EHCP had applied and been found ineligible. The eligibility criteria for EHCPs means that it may be possible to conduct a regression discontinuity quasi-experimental evaluation of EHCPs where relevant outcome data are available routinely. The relationship between EHCPs and mental wellbeing but not emotional problems may be a result of the weak correlation between mental illness and subjective wellbeing (Fink et al, 2015). We found a lower correlation between emotional and mental wellbeing among young carers than their peers. This supports the need to consider both the emotional and mental wellbeing of young carers in the development of whole school approaches.

There is a clear need to address the emotional and mental wellbeing of young carers because the most profound decline in general health status since 2001 has been observed in carers aged between 0 and 24 years (ONS, 2013a). There are consistent trends across this age group with the prevalence rates of long-standing mental illness among children and young people increasing by six fold since 1995 across England (Pitchforth et al, 2019). The rise in prevalence may be the result of a number of complex and overlapping factors. These potentially include the accuracy of self-reported outcomes, a rise in difficulties, austerity, academic pressures, reduced sleep, increased use of social media and changes in mental health diagnostic practices (Deighton et al, 2019). While it is outside the scope of HeadStart to assess the impact of these risk factors, future programmes should consider these wider determinants of health.

These findings also need to be put into the context of the potential benefits of caring for others. Many carers value their role, and over time, have developed new skills, coping mechanisms and resilience to deal with the difficulties of being a young carer (Wayman et al, 2016). Despite these benefits there is a clear need to understand and support the development of coping mechanisms that can support the physical and mental wellbeing of young carers (Becker and Becker, 2008; Nagl‐Cupal et al, 2014; Joseph et al, 2020). EHCPs that put in place plans for various situations which could arise for young carers may lead to improved wellbeing by reducing some of their worries, while not completely removing their additional responsibilities (Cree, 2003).

Future strategies must account for the variable conditions, disabilities, stresses and strains on young carers, because every situation is dynamic, subject to ongoing flux and change (Wayman et al, 2016). These must also attempt to help overcome the impacts of diverse risk factors, such as living in lower-income populations, social isolation and living in poor housing conditions (Becker and Becker, 2008; Wayman et al, 2016). Future strategies and interventions need to account for contributory pressures, such as reduced infrastructure, poor/non-existent transport links, low education attainment/employment opportunities, sparse service provision and being isolated from other family members (Frank and McLarnon, 2008; Wayman et al, 2016).

Systemic changes are needed to address these wider determinants of health, which require early intervention, significant resourcing and additional support provision (Deighton et al, 2019) that are tailored to the needs of young carers. To overcome the pressures and hidden nature of being a young carer (Smyth et al, 2011; Järkestig-Berggren et al, 2019), these need to be incorporated into future wellbeing programmes and be delivered alongside increased interdisciplinary and multi-agency working outside the school environment (Joseph et al, 2020). This should also include identification of, and special attention paid to, young carers at the start of their adult lives when they are undergoing extensive changes and taking major decisions on study and career issues (Boumans and Dorant, 2018).

The large sample size and high response rate of the WMF survey across Cornwall reduces the risk of bias in the study and adds considerable strength to our study. Despite this strength, several limitations exist. The experience of undertaking the WMF survey in 2018 highlighted the need for data collection to adapt to the needs of specific students, such as those with reading difficulties or those with English as an additional language (EBPU, 2018). While the sensitivity and security of the data were emphasised to the teachers and pupils, we do not have any information about how privacy was maintained during survey completion. The presence of a teacher is likely to have minimised the discussion between pupils, but we cannot rule out the potential for bias related to social desirability, peer pressure or stigma. This has the potential to lead to both under-reporting (for example, due to fear of teachers or peers knowing about their caring status) and over-reporting (for example, friendship groups seeking to share similar characteristics) of wellbeing and caring, and is therefore difficult to account for in the analysis. We conducted a complete case analysis, limited by missing data across schools, which appears to have meant that some vulnerable young people were lost from the analysis, especially males and those living in more deprived areas. Due to the specialist data collection, we have not been able to make any comparisons between those who did and did not complete the WMF survey. There is a clear reliance on self-reporting of the emotional and mental wellbeing questions in the WMF survey tool, although widely used validated and reliable measures were employed (Deighton et al, 2019). While the use of SWEMWBS and SDQ may lack specificity and sensitivity, they are validated and are commonly used with children and young people, including young carers (Goodman et al, 1998; 2000; Goodman, 2001; Abraham and Aldridge 2010; Järkestig-Berggren et al, 2019; Robison et al, 2020).

Conclusion

Secondary analysis of data from the HeadStart study has continued to confirm that young carers report poorer mental – and especially emotional – wellbeing than their peers without caring responsibilities. Additionally, our study found that primarily financial interventions like FSMs do not seem to have as much of an impact on carer wellbeing as broader interventions like EHCPs. Our findings regarding EHCPs alongside those of Choudhury and Williams (2020) may indicate the need for an evaluation of EHCPs for young carers and a review of the eligibility criteria to better support them. Interventions like EHCPs that work with young carers, their families and schools to implement appropriate support and plans may help young carers maintain their caring responsibilities while mitigating against the more unpredictable and detrimental aspects of caring (Cree, 2003; Järkestig-Berggren et al, 2019; Wind and Jorgensen, 2020). However, there remains a need to support the emotional wellbeing of young carers.

Funding

The data used in this study was collected as part of the HeadStart learning programme and supported by funding from the National Lottery Community Fund. The HeadStart learning programme is being delivered by a consortium of partners led by the Evidence Based Practice Unit (EBPU) (a collaboration between University College London and the Anna Freud National Centre for Children and Families), including the University of Manchester and the Child Outcomes Research Consortium (CORC). The content is solely the responsibility of the authors and it does not reflect the views of the National Lottery Community Fund, EBPU, University of Manchester or CORC.

Started in 2016, HeadStart is a five-year, £58.7 million National Lottery-funded programme set up by the National Lottery Community Fund, the largest funder of community activity in the UK. HeadStart aims to explore and test new ways to improve the mental health and wellbeing of young people aged 10 to 16 and prevent serious mental health issues from developing. To do this, six local authority-led HeadStart partnerships are working with local young people, schools, families, charities, community and public services to design and try out new facilitator interventions that will make a difference to young people’s mental health, wellbeing and resilience. The HeadStart partnerships are in the following locations in England: Blackpool, Cornwall, Hull, Kent, Newham and Wolverhampton.

Acknowledgements

We would like to thank first and foremost the young people of Cornwall who have been part of the HeadStart Kernow programme and have given their consent to complete the Wellbeing Measurement Framework Survey, in particular the young people who self-identified as young carers. We would also like to acknowledge the dedication of staff in the secondary schools and the alternative provision academies in Cornwall without whom the collection of this data would not have been possible.

We would like to acknowledge and thank all of those from the national and local team at Cornwall Council who have contributed to the design and delivery of HeadStart research. This includes the wider Cornwall Council teams who have supported the HeadStart programme, which made this secondary data analysis study possible.

Conflict of interest statement

The authors declare that there is no conflict of interest.

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Appendix

Supplementary material 1:

Data linking with locally available data held by the Performance Data Team (Together for Families)

VariableDescription
EthnicityDefined as Asian, Black, Chinese, Mixed, White or any other ethnic group.
Summer bornDefined by date of birth and if children born were in May, June, July & August.
SENSpecial educational needs (SEN) – includes children on an Education, Health and Care plan (EHCP), receiving SEN support and statemented children (these children were gradually moved onto an EHCP).
FSMFree school meals (FSM) – Children are eligible for free schools meals where a parent or guardian meets specific financial criteria. Data provided here relates to pupils who have been eligible for free school meals at any time in the last 6 years (FSM6). These pupils are eligible for the deprivation element of the Pupil Premium.
EALChildren speaking English as an addition language.
DeprivationFor the purposes of this analysis, pupils whose home postcodes are in the most deprived 20% of Lower Super Output Areas in England, according to the Index of Multiple Deprivation. Home address sourced from the Department for Education Spring School Census (Jan 2018).
  • Abraham, K. and Aldridge, J. (2010) The Mental Well-Being of Young Carers in Manchester: Who Cares About me?, Manchester: Manchester Carers Forum.

    • Search Google Scholar
    • Export Citation
  • Areguy, F., Mock, S.E., Breen, A., Van Rhijn, T., Wilson, K. and Lero, D.S. (2019) Communal orientation, Benefit-finding, and coping among young carers, Child & Youth Services, 40(4): 36382. doi: 10.1080/0145935X.2019.1614906

    • Search Google Scholar
    • Export Citation
  • Beaton, M., Craig, N., Wimbush, E., Craig, P., Katikireddi, V., Jepson, R. and Williams, A. (2014) Evaluability Assessment of Free School Meals for all Children in P1 to P3, Edinburgh: NHS Health Scotland.

    • Search Google Scholar
    • Export Citation
  • Becker, F.and Becker, S. (2008) Young adult carers in the UK – experiences, needs and services for carers aged 16–24, www.researchgate.net/publication/242516531_Young_Adult_Carers_in_the_UK.

    • Search Google Scholar
    • Export Citation
  • Boumans, N.P.G. and Dorant, E. (2018) A cross-sectional study on experiences of young adult carers compared to young adult noncarers: parentification, coping and resilience, Scand J Caring Sci, 32(4): 140917. doi: 10.1111/scs.12586

    • Search Google Scholar
    • Export Citation
  • Child Outcomes Research Consortium (2017) Learning from HeadStart: wellbeing measurement framework for secondary schools, www.corc.uk.net/media/1517/blf17_20-second-school-measuresbl-17-03-17b.pdf.

    • Search Google Scholar
    • Export Citation
  • The Children’s Society (2018) The good childhood report 2018, www.childrenssociety.org.uk/what-we-do/resources-and-publications/the-good-childhood-report-2018.

    • Search Google Scholar
    • Export Citation
  • Choudhury, D. and Williams, H. (2020) Strengthening the educational inclusion of young carers with additional needs: an eco-systemic understanding, Educational Psychology in Practice, 36(3): 24156. doi: 10.1080/02667363.2020.1755954

    • Search Google Scholar
    • Export Citation
  • Cohen, J.F.W., Hecht, A.A., McLoughlin, G.M., Turner, L. and Schwartz, M.B. (2021) Universal school meals and associations with student participation, attendance, academic performance, diet quality, food security, and body mass index: a systematic review, Nutrients, 13(3): 911. doi: 10.3390/nu13030911

    • Search Google Scholar
    • Export Citation
  • Cornwall Council (2021) School Meals, Truro: Cornwall Council.

  • Cree, V.E. (2003) Worries and problems of young carers: issues for mental health, Child & Family Social Work, 8(4): 3019. doi: 10.1046/j.1365-2206.2003.00292.x

    • Search Google Scholar
    • Export Citation
  • Deighton, J., Lereya, S.T., Casey, P., Patalay, P., Humphrey, N. and Wolpert, M. (2019) Prevalence of mental health problems in schools: poverty and other risk factors among 28,000 adolescents in England, The British Journal of Psychiatry, 215(3):13. doi: 10.1192/bjp.2019.19

    • Search Google Scholar
    • Export Citation
  • DfE (Department for Education) (2016) The Lives of Young Carers in England, London: DfE.

  • EBPU (Evidence Based Practice Unit) (2018) Case Study 1 – Using Surveys to Measure Wellbeing in Schools: How to Get a Good Response Rate, London: EBPU.

    • Search Google Scholar
    • Export Citation
  • EBPU (n.d.) Case Study 3 – Using Data to Inform System and Cultural Change, London: EBPU.

  • Fink, E., Patalay, P., Sharpe, H., Holley, S., Deighton, J. and Wolpert, M. (2015) Mental health difficulties in early adolescence: a comparison of two cross-sectional studies in England from 2009 to 2014, Journal of Adolescent Health, 56(5): 5027. doi: 10.1016/j.jadohealth.2015.01.023

    • Search Google Scholar
    • Export Citation
  • Frank, J. and McLarnon, J. (2008) Young Carers, Parents and Their Families: Key Principles of Practice, London: The Children’s Society.

    • Search Google Scholar
    • Export Citation
  • Goodman, R. (2001) Psychometric properties of the Strengths and Difficulties Questionnaire, Journal of the American Academy of Child & Adolescent Psychiatry, 40(11): 133745. doi: 10.1097/00004583-200111000-00015

    • Search Google Scholar
    • Export Citation
  • Goodman, R., Meltzer, H. and Bailey, V. (1998) The Strengths and Difficulties Questionnaire: a pilot study on the validity of the Self-report version, European Child & Adolescent Psychiatry, 7(3): 12530.

    • Search Google Scholar
    • Export Citation
  • Goodman, R., Ford, T., Simmons, H., Gatward, R. and Meltzer, H. (2000) Using the Strengths and Difficulties Questionnaire (SDQ) to screen for child psychiatric disorders in a community sample, The British Journal of Psychiatry, 177(6): 5349. doi: 10.1192/bjp.177.6.534

    • Search Google Scholar
    • Export Citation
  • Gov.uk (n.d.) Children with Special Educational Needs and Disabilities (SEND) – Extra Help, London: GOV.UK.

  • Hamilton, M. and Redmond, G. (2020) Are young carers less engaged in school than non-carers? Evidence from a representative Australian study, Child Indicators Research, 13(1): 3349. doi: 10.1007/s12187-019-09647-1

    • Search Google Scholar
    • Export Citation
  • Harris, B. (1995) The Health of the Schoolchild: A History of the School Medical Service in England and Wales, Buckingham: Open University Press.

    • Search Google Scholar
    • Export Citation
  • HeadStart Kernow (2021) Welcome to HeadStart Kernow, Cornwall: Headstart Kernow.

  • HeadStart Learning Team (n.d.) HeadStart for schools, https://headstartlearning.info/about.

  • Hughes, K., Lowey, H., Quigg, Z. and Bellis, M.A. (2016) Relationships between adverse childhood experiences and adult mental Well-being: results from an English national household survey, BMC Public Health, 16(1): 222. doi: 10.1186/s12889-016-2906-3

    • Search Google Scholar
    • Export Citation
  • Inchley, J., Currie, D., Budisavljevic, S., Torsheim, T., Jåstad, A., Cosma, A., Kelly, C., Arnarsson, Á.M., Barnekow, V. and Weber, M.M. (2020) Spotlight on Adolescent Health and Well-Being. Findings from the 2017/2018 Health Behaviour in School-Aged Children (HBSC) Survey in Europe and Canada. International Report. Volume 1. Key Findings, Copenhagen: WHO Regional Office for Europe.

    • Search Google Scholar
    • Export Citation
  • Järkestig-Berggren, U., Bergman, A.S., Eriksson, M. and Priebe, G. (2019) Young carers in Sweden: a pilot study of care activities, view of caring, and psychological well-being, Child & Family Social Work, 24(2): 292300. doi: 10.1111/cfs.12614

    • Search Google Scholar
    • Export Citation
  • Joseph, S., Sempik, J., Leu, A. and Becker, S. (2020) Young carers research, practice and policy: an overview and critical perspective on possible future directions, Adolescent Research Review, 5(1): 7789. doi: 10.1007/s40894-019-00119-9

    • Search Google Scholar
    • Export Citation
  • Lloyd, K. (2013) Happiness and well-being of young carers: extent, nature and correlates of caring among 10 and 11 year old school children, Journal of Happiness Studies, 14(1): 6780. doi: 10.1007/s10902-011-9316-0

    • Search Google Scholar
    • Export Citation
  • Nagl‐Cupal, M., Daniel, M., Koller, M.M. and Mayer, H. (2014) Prevalence and effects of caregiving on children, Journal of Advanced Nursing, 70(10): 231425. doi: 10.1111/jan.12388

    • Search Google Scholar
    • Export Citation
  • ONS (Office for National Statistics) (2013a) Full story: the gender gap in unpaid care provision: is there an impact on health and economic position?, www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/healthandwellbeing/articles/fullstorythegendergapinunpaidcareprovisionisthereanimpactonhealthandeconomicposition/2013-05-16.

    • Search Google Scholar
    • Export Citation
  • ONS (2013b) Providing unpaid care may have an adverse affect on young carers’ general health, https://webarchive.nationalarchives.gov.uk/20160107224205/http://www.ons.gov.uk/ons/rel/census/2011-census-analysis/provision-of-unpaid-care-in-england-and-wales--2011/sty-unpaid-care.html.

    • Search Google Scholar
    • Export Citation
  • Pitchforth, J., Fahy, K., Ford, T., Wolpert, M., Viner, R.M. and Hargreaves, D.S. (2019) Mental health and Well-being trends among children and young people in the UK, 1995–2014: analysis of repeated cross-sectional national health surveys, Psychological Medicine, 49(8): 127585. doi: 10.1017/S0033291718001757

    • Search Google Scholar
    • Export Citation
  • Richardson, K., Jinks, A. and Roberts, B. (2009) Qualitative evaluation of a young carers’ initiative, Journal of Child Health Care, 13(2): 15060. doi: 10.1177/1367493509102475

    • Search Google Scholar
    • Export Citation
  • Robison, O.M.E.F., Inglis, G. and Egan, J. (2020) The health, well-being and future opportunities of young carers: a population approach, Public Health, 185: 13943. doi: 10.1016/j.puhe.2020.05.002

    • Search Google Scholar
    • Export Citation
  • Shields, K. (2021) Free school meals and governmental responsibility for food provision, Edinburgh Law Review, 25(1): 11117. doi: 10.3366/elr.2021.0678

    • Search Google Scholar
    • Export Citation
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