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The UP Study - Inequalities in Palliative Care for Older People

The UP Study - Understanding Inequalities in Palliative Care for Older People and Providing for Future Need

Principal Investigator: Professor Karen Ryan

Host Institution: University College Dublin, (UCD)

Aim

The aim of the research is to generate evidence on:

  1. current and future Palliative Care (PC) needs
  2. the magnitude and drivers of financial hardship among the seriously-ill and their households; and
  3. what is required to effect change and deliver on equitable provision.

Objectives

The objectives are to:

  1. To estimate the prevalence of palliative care need (with particular focus on needs of older persons) and model need up to 2046,
  2. To calculate health and social care utilisation, the costs of informal care provision and private health expenditure of older people and caregivers. This work will include  examination of financial risk protection and the extent of direct costs to service users and caregivers as an indicator of accessibility of care and quality of experiences for older people with palliative care needs,
  3. To use in-depth interviews with stakeholders to understand the reasons why current knowledge regarding best practice for older persons is not put into practice and to integrate diverse stakeholder perspectives (commissioners, service providers and service users) into an understanding of what is needed to effect change and deliver on equitable palliative care service provision for older people.

The research project will help directly inform the development of a universal national palliative care service as recommended by Sláintecare. The results of this research will improve understanding of the factors that facilitate appropriate access and utilisation of formal care services (informal care provision, financial costs, needs, service availability). By capturing the practical insights and experiences of stakeholders, this theoretically grounded study will provide a foundational basis for addressing how inequities in outcomes may be addressed.