The lives of young carers in England Qualitative report to DfE February 2016 TNS BMRB Dan Clay Caitlin Connors Naomi Day Marina Gkiza with Professor Jo Aldridge, Young Carers Research Group, Loughborough University Contents List of tables 5 Executive Summary 6 Overview 6 Background 6 Methodology 7 Key findings 7 Understanding the context of caring: young carers and their families (Section 2) 7 Experiences and impact of caring on children and families (Section 3) 8 Young carer needs assessments and uptake of services (Section 4) 9 Support propositions: views of young carers and their families (Section 5) 10 1. Introduction 12 1.2. Background 12 1.3. Methodology 14 Research ethics 17 Analysis and reporting 17 1.4. Report outline 18 2. Understanding the context of caring: young carers and their families 20 2.1. Profile of young carers and their families 20 2.2. Caring needs within the home 24 2.3. Talking about conditions and caring within families 27 2.4. The nature of young carers’ responsibilities 29 2.5. Factors influencing the roles/responsibilities of young carers 31 2.6. Summary of the chapter 35 3. Experiences and impact of caring on children and families 37 2 3.1. Views and impacts of caring 37 3.2. Perceptions of the ‘young carer’ identity 47 3.3. Summary of the chapter 49 4. Young carer ‘identification’ and uptake of services: views of young carers and their families 51 4.1. Experiences of contact and identification with young carers’ services and support agencies 51 4.2. Experiences of receiving support 56 4.3. Summary of the chapter 66 5. Support propositions: views of young carers and their families 69 5.1. Overall gaps and improvements identified 69 5.2. Views on the usefulness and impact of potential support propositions 70 5.3. Summary of the chapter 80 6. Conclusions 82 6.1. Key Findings 82 6.2. Messages from children and families 87 References 89 Appendix A: Propositions tested with young carers and their families 91 Appendix B: Topic guides and stimulus 95 DfE Young Carers Research Topic Guide - Family Visits 96 A. General Introduction to the visit (20–30mins) 97 B. Exploring the family dynamic (15-25mins) 99 C. Parent/guardian/sibling follow up interview (50-60mins) 101 D. Private, semi-structured interviews with carers (45-75 mins) 105 DfE Young Carers Research Topic Guide – Validation Workshops 116 A. General Introduction to the workshop (2 mins) 116 3 B. Introductions (5 mins) 117 C. Experience of caring (20mins) 118 D. Experience of supports and assessments (25-30 min) 119 E. Prioritising support (25 mins) 122 F. Looking forward (5 mins) 123 G. Summing up (5-10 mins) 123 Appendix C: Research ethics 125 Consent to take part in the research 133 4 List of tables Table 1 Sample of young carers and their families 19 5 Executive Summary Overview This report forms part of a programme of research conducted by TNS BMRB, in partnership with Professor Jo Aldridge, Director of the Young Carers Research Group (YCRG) at Loughborough University, investigating the lives of young carers aged 5 to 17 in England. This research, undertaken on behalf of the Department for Education, has comprised: • A feasibility study to find a cost effective quantitative approach (or approaches) that can give the Department an estimate of the prevalence of young caring, the characteristics and circumstances of young carers and the impact of their caring responsibilities on their lives. • Qualitative research to find out more about the characteristics of young carers and their families; the nature of care they are providing; the impacts of caring responsibilities and needs of both young carers and their families; experiences of support; and responses to support propositions developed in consultation with key local and national stakeholders. This qualitative research forms the focus of this report. Background According to the most recent census (Office for National Statistics, 2011), there are almost 166,000 young carers (aged 5-17) in England. Young carers undertake a wide range of caring roles and responsibilities, including emotional support, personal care, housework and household budgeting. While research has found that caring can result in positive impacts, there is a relatively strong body of evidence on the adverse impact of caring on health outcomes, social activity, educational engagement and employment opportunities for young carers (e.g. Aldridge, 2008; Becker, 2007). As such, children who live with and care for parents or other family members who are ill or disabled may require support in their capacity as children and/or as young carers. At present, young carers and their families have access to a range of different health, social care and educational support services, all of which should include needs assessments that support the identification and management of adults as services users, the support needed in their role as parents and, importantly, the support needs of their children. However, a significant proportion of young carers have not disclosed their 6 caring responsibilities to their school, they are no more likely to be in contact with social services than are their peers, and only a minority have had an assessment of their needs or been informed about sources of help (Barnardo’s, 2006; Dearden and Becker, 2004; The Children’s Society, 2013). Many families do not recognise their children as ‘carers’ (Smyth et al., 2011), some children do not recognise or identify with the role, and there can be a degree of reluctance, even anxiety, among families in disclosing caring responsibilities. With the implementation of the Care Act 2014 (HM Government, 2014) and the Children and Families Act 2014 (HM Government, 2014) there is now a need for local authorities to identify and assess the support needs of young carers, regardless of the type of support they provide. Methodology This research involved 22 face to face research visits conducted with young carers aged 6-17 and their families between January and March 2015. A number of purposive recruitment approaches were used to sample a broad range of young carers including: targeted engagement with gatekeepers in young carer support services such as young carers' projects and young carer respite services; and screening from an online panel. Research visits lasted 3-4 hours and used a mixture of exploratory discussions with families, observations of family interaction, in-depth interviews with children who were providing care for parents/siblings, and interviews with parents/guardian and other family members e.g. a cared-for sibling. The research with young carers, and the support propositions tested, were informed by a rapid evidence assessment (undertaken as part of the accompanying feasibility study) and 10 telephone interviews undertaken with individuals representing local authorities and national and local support organisations across England between October and December 2014. Finally, a 90-minute workshop was conducted with young people (n 9) aged 11-17 who attended young carers’ projects to validate key findings on the types of support local authorities should prioritise. Key findings Understanding the context of caring: young carers and their families (Section 2) • Young carers were more likely to care for a mother than a father, and lone parent families were over-represented in the sample. This is aligned with findings from previous research (e.g. Dearden and Becker, 2004) 7 • Cared-for parents/siblings all had a single or dual diagnoses of physical or mental health illnesses/disabilities, however these were often also accompanied by other physical and/or mental health issues that had not been formally diagnosed. Parental mental health conditions were particularly challenging for children to cope with due to the unpredictability of the nature and extent of care support needed. This unpredictability also had implications for the degree to which mental health services were able to provide timely support for parents with mental health problems. • Parents could struggle to discuss their health conditions with their children, particularly where their conditions were complex or terminal, or where the child was young (i.e. those aged under 10 or 11). There was a clear desire among young carers of all ages to better understand the condition of the cared-for person – potentially through greater involvement in discussions held between health care professionals and their parents. • Older young carers (those aged 16 and 17), and those in lone parent households, tended to take on greater caring responsibilities and felt more responsible for providing support than did younger carers or those children who had not disclosed their caring responsibilities. In most cases young carers stated that they were happy to provide caring support – even more personal forms of care - however there were some responsibilities, such as helping to manage household finances, where they indicated that they were less comfortable due to a lack of experience. • School holiday periods were particularly challenging for most of the young carers due to an increase in their caring responsibilities at home and reduced opportunities to engage in other activities both inside and outside the home as compared to during term-time. Experiences and impact of caring on children and families (Section 3) • Caring was seen to be a very rewarding role by the majority of the young carers – regardless of age or length of time caring - bringing with it a range of positive emotional and psychological benefits. However caring also had adverse effects: anxiety, stress, tiredness, strain within family relationships, restrictions in social activities and relationships, and under-engagement in education. • The majority of parents were keen to reduce the impact of caring responsibilities undertaken by their children particularly in respect of social relationships and school engagement. There was a clear desire among parents for their children to receive 8 support in making effective education transitions and in planning for the future. However, parents did not appear to be actively preparing for their child to cease caring responsibilities through explicit parent-child discussions of how caring needs could be fulfilled as their children grew older and became more independent. • Young carers developed different coping strategies in order to lessen the impact of their caring responsibilities. Older young carers benefited particularly from social relationships, whereas younger carers benefited from sharing their feelings openly with parents and some used tools such as worry books (introduced either by parents or school support staff) to communicate their thoughts and feelings. To reduce the impact of their caring role on their education, many young carers in secondary school tried to complete homework before returning home. • Young carers known to local services did identify with the term ‘young carer’. Young carers were proud of their caring role but also recognised that it was used as a label which carried with it negative connotations. Young carers not receiving formal support services did not self-identify with the term ‘young carer’ and parents of these children and young people expressed concerns about their child being labelled as a young carer – a label which they felt reflected negatively on them as a parent. Young carer needs assessments and uptake of services (Section 4) • Formal or informal support helped reduce the extent of young carers’ responsibilities, however not all parents were comfortable disclosing their condition to health and social care professionals due to a fear of the potential repercussions for their family. • There was confusion among both young carers and their parents as to whether children had received their own young carers’ needs assessment. Children and parents believed needs assessments could be improved by ensuring they were conducted promptly following disclosure, in a private setting, in a mode preferred by the child (i.e. face-to-face or by telephone), and with clarity in respect of the outcomes of the assessment. • Young carers typically accessed young carers’ services via referrals from adult/children’s social care, school, or adult/children’s health services. Barriers to accessing support included parental concerns about the consequences of disclosure for families (and what this would mean for their children), lack of understanding of the nature of support available, and concern as to the appropriateness or impact of interventions and support services. Conversely, early and effective communication 9 between professionals and families helped to allay parental concerns about the consequences of requesting/accessing support, and helped to facilitate access to young carers’ projects. • Young carers’ projects were an important source of formal support and respite for young carers. Having caring in common made it easier for these children and young people to open up in conversation about caring – something that was valued by both parents and their children. Projects also provided access to fun activities, as well as information, advice and advocacy, although the nature and extent of provision varied across the projects. As young carers became older it was evident that they sought to engage with a wider peer group, and relied less on young carers’ projects. Young carers and parents both expressed a desire for young carers’ projects to provide support for families to spend more time together. • Schools provided support to those children who were identified as young carers, ranging from personalised teaching/pastoral support, access to homework clubs or afterschool provision, and greater flexibility in school/class attendance. Support for young carers in school varied considerably, in some cases support reduced the emotional and educational impact of caring, but in other cases it was inconsistently provided due to a lack of shared information/understanding between teachers. • Social workers tended to have limited contact with young carers about their caring role, although some children did have a key worker who discussed the impact of caring with them and made referrals to young carers’ services. There was a high degree of distrust of social services generally, and social workers more specifically, within families who had direct experience of support from social services in the past. In these cases both children and their parents were reluctant to disclose information about caring responsibilities for fear of potential repercussions in the form of interventions that might lead to family separations. Support propositions: views of young carers and their families (Section 5) • Parents and young carers identified a number of factors that would promote access to support for young carers. These included: increasing the inclusivity and availability of young carers’ services (e.g. greater support for younger carers and enabling access through central locations or transportation to and from services); ensuring that health and social care support services communicate the availability and nature of young carers’ services quickly and effectively; standardising age appropriate activity and 10