Scoping the assessment needs of child carers of adults with long term conditions Dr. Lioba Howatson-Jones & Esther Coren R Research Centre for Children, Families and Communities

R Presentation aims Introduce the background to the study Present the research and the methodology used Identify the main themes Create space for discussion

R Research Centre for Children, Families and Communities Profile of the South East Between 2008 and 2030 it is expected that: The number of people aged 85+ will double to 423,600, increasing from 2.5% of the population to 4.3% (compared with an increase from 2.2% to 3.9% in England as a whole) The number of people with a limiting long-term illness (LLTI) will increase by over a third, from 1.3 million to > 1.7 million More than twice as many people aged 65 or over will have dementia > 161,000 The number of carers will increase by > 126,000 or 15%, compared with 15% in England as a whole (CIRCLE, 2010)

R Research Centre for Children, Families and Communities 2001 census The region had 23,433 young carers under 20 years of age. Of these young carers: 1,609 provided 50 or more hours of care per week 11,958 were under 16 years old 640 were themselves in poor health 2.4% of Indian and 4.2% of Pakistani children provided unpaid care, compared with just 1.6% of White British children (CIRCLE, 2010)

R Research Centre for Children, Families and Communities Background The numbers of young carers are grossly underestimated due to lack of visibility. Census figures suggest a total of 175,000 in the UK, but the true number is closer to 700,000 Variety of definitions of caring Government policy has committed to protect children and young people from inappropriate caring and to support them to achieve the outcomes set out in Every child matters. Despite increased funding services have not greatly improved (Department of Health, 2008) Recommendations from other research suggest that professionals should be cognisant of child carers needs and expertise (Dearden et al, 1994; Joseph et al 2009)

R Research Centre for Children, Families and Communities Literature review Children are engaged in caring activities often carried out by professionals as well as more fundamental tasks such as washing and dressing Dearden et al (1994) state that professionals need to: “ identify child carers; acknowledge their contributions; listen to them.” Children’s development is affected in terms of physical and mental well being and social and educational opportunities (Barry, 2011)

R Research Centre for Children, Families and Communities Research question “How can young carers needs be included in the assessment of an adult with a long term condition?” Some assessment tools are available from a variety of organisations focusing on the needs of carers. What this project aimed to do was bridge the gap between adult and child services by developing a tool that can be embedded within Adult nursing assessment processes and documentation.

R Research Centre for Children, Families and Communities Methodology Focus groups Thematic analysis Reviewing themes with participants Development of assessment tool Sharing assessment tool with young carers Refining assessment tool Development of questionnaire Dissemination conference held in July 2012

R Research Centre for Children, Families and Communities Mapping current practice interview questions How is a client with a long term condition currently assessed? How is a family assessed for young carer involvement? How does local policy inform this assessment? What additional services are involved in providing care?

R Research Centre for Children, Families and Communities Resulting themes Carer - role and relationship What carers do – Formal/informal Carers perceptions of the patient’s condition Carer’s maturity to understand the patient’s condition Carer strain – definition and triggers Risk assessment Carer vulnerability Cultural context Mapping support Assessment and review of outcomes of planned actions

R Research Centre for Children, Families and Communities Conclusions Health professionals did not always know about young carers in their catchment or case load area Services were focused on the person cared for Carers needed updating on changes made when the person cared for accessed acute services Explanations about the long term condition needed to be clear and age specific

R Research Centre for Children, Families and Communities Discussion How might the assessment tool be implemented in your arena of practice?

R Research Centre for Children, Families and Communities Acknowledgements All the participants and organisations who took part

R Research Centre for Children, Families and Communities References Barry, M. (2011) ‘I realised that I wasn’t alone’: the views and experiences of young carers from a social capital perspective. Journal of Youth Studies 14: Centre for International Research in Care, Labour and Equalities (CIRCLE) (2010) Carers in the Region: a profile of the South East. University of Leeds in association with the Department of Health. Dearden, C. Becker, S. Aldridge, J. (1994) Partners in caring. Young Carers Research Group Department of Health (2008) Carers at the heart of 21 st Century Families and Communities. London: The Stationary Office Joseph, S. Becker, F. and Becker, S. (2009) Manual for Measures of Caring Activities and Outcomes for Children and Young People. London: The Princess Royal Trust for Carers. Kent County Council (2007) Kent Young Carers Strategy – invisible people. KCC Manchester Carer Forum (2010) Who cares about me? Manchester: Manchester Carer Forum The Princess Royal Trust for Carers and Crossroads Care (2011) NHS not making the break for carers. London: The Princess Royal Trust for Carers and Crossroads Care