Carer Needs Assessment Development - A Republic of Ireland led International Joint Working Project to Support Delivery of Integrated Health and Social Care

Abstract

Despite an increasing share of societal income being used to deliver health and social care services, families accross the globe continue to provide upwards of 80% of the overall care delivered (Huber & Hennessy, 2005; Dieleman et al, 2016). Such carers often experience inadequate recognition of their unique and crucial role in keeping their care recipients well and at home, and in the wider scheme of sustaining national and international healthcare infrastructure. While family carers availability and willingness to provide care is crucial; stress, isolation and ill health are frequently experienced;all of which may impact on their quality of life and ability to care, and further may impact on the availability of this under resourced pool of caregivers into the future. Identifying the needs of family carers is increasingly being viewed as a key intervention in the development of fully integrated health and social care (Guberman et al, 2007). The positive impact of such assessments to carers is wide and varied, particularly in reducing their burden of stress and depressive symptoms (Guberman et al, 2003; Becker et al, 2005; Kwak et al, 2011). Internationally, Carer Needs Assessments (CNA's) have been enshrined in law in the UK for over 20 years and are significantly embedded in assessment processes; while in the US in particular- there has been some legislative initiatives to bring Family Carers closer to the centre of care. This paper discuses the Carer Needs Assessment Development Project and presents preliminary findings on Irish data from the Carer Needs Assesment international pilot study. In giving expression to the Irish National Carers Strategy which seeks to work with Family Carers as partners in care (Department of Health (IRL), 2012), the HSE Single Asessment Tool (SAT) Project established a collaborative Working Group to develop a Carer Needs Assessment for national and international use. This group comprised of HSE SAT national team members, not-for profit national Carer/Advocacy Organisations (NGOs),and the international not-for-profit organisation ‘interRAI™’ who specialise in evidence-based assessment systems development. The Working Group are developing a CNA, initially paper based, which is currently being piloted with adult family carers in a longitudinal study across 11 countries, including Ireland, in order to finalise the tool. Once the pilot is complete, the CNA will be available as part of the interRAI integrated suite of assessment tools which are in use Ireland and internationally in an electronic format across health care settings. The target population for the pilot study are adult family carers who are providing an ongoing and significant level of care to an older person person who is in need due to illness, disability, or frailty. A family carer can be a relative, friend or neighbour. Approximately 600 Family Carers will be recruited internationally. The final potential target population in Ireland is all Family Carers who provide significant levels of care. This initiative is innovate as it represents a first between a state health agency, a number of not-for profit agencies and a leading academic health care assessment systems design collaboration (interRAI), in developing, testing and (potentially) implementing a comprehensive standardised assessment tool. Current models of CNA have not been exposed to sufficiently comprehensive evaluation. This paper charts the progression and challenges of this initiative, using an Implementation Science Framework. There will be a discussion on the learnings from the process together with a wider assessment of the future potential for Carer Needs Assessments in general.