Researching the Needs of Older People

Background
An important development within palliative care has been the public health approach to palliative care provision (Kellehear 2005). This approach argues that communities can be proactive in engaging with the broader implications of dying, death and bereavement, within their midst, alongside professionals, institutions and their associated services. Ways identified to develop a health promoting palliative care approach are compatible with other well-established community development approaches that adopt a participatory approach to address key issues (Kretzmann and McKnight 1993). Public awareness initiatives in end of life care are being promoted nationally and internationally. In the United Kingdom (UK) this approach is integral to national end of life care strategies. National programmes of work are complemented by local initiatives, engaging with different sectors of the population.

Aims, Objectives and Design of Project
Aim: To work with partner organizations/programmes to develop the evidence base for effective approaches to community engagement as a tool for changing public awareness of end of life issues.
Partner Programmes:
Three public awareness initiatives from the North West region, that are showing early evidence of outcomes, will be partners in this KE:

1. Lancaster Peer educator programme - older adults trained as end of life peer educators.
2. The Conversations for Life programme - 12 month pilot with NHS Cumbria.
3. The Conversations for Life Community Convener Facilitation programme - an asset based approach to engaging communities around death, dying and bereavement.

A two year study to evaluate 6 Age UK pilot projects in England providing volunteer support services to bereaved older carers, or older people providing care to family members nearing end of life. Support provided to older carers will take the form of signposting or providing advice, practical and emotional support. A national service model/toolkit will be developed that will guide other organisations on delivery of Age UK End of Life Care services.

Project update: (16/04/2013)

Observation and data collection phases have been completed for the evaluation, and analysis has commenced on thematic areas that have emerged as key to support work undertaken by the six pilot projects with older carers and their relatives, which include:

• the multiple, complex needs of older carers of people nearing the end of life;
• the provision of volunteer services in this area of provision;
• referral and service take-up;
• service provision sustainability.

This two-year study will explore the experiences of people who have cared for an older family member who has died at home. Recent health policy has prioritised enabling people to make choices about their place of care at the end of life, and advocates an increase in home death rates. However, there is a growing critique that such policy fails to acknowledge the needs and preferences of older people, and that they may not regard death at home as feasible or appropriate. This study aims to improve care for older people dying at home, both by identifying practical strategies to support family carers at home and by informing policy development.

The study is led by Professor Sheila Payne and involves a team of researchers from Lancaster University, Honiton Surgery in Devon and Leeds Metropolitan University. It is funded by Marie Curie Cancer Care.

An link to an interview with Professor Payne about the study can be seen under Resources below.

Working collaboratively with a group of older adults (End of Life Peer Education group), an ongoing programme of work is being undertaken to develop public awareness about end of life issues amongst older people within the general public. To date funding has been awarded from NHS Lancashire (2009) and Lancashire County Council (2011) for two pieces of work. Outcomes are:

• Development of a personal planning portfolio
• 2 public workshops for 35 older adults and their advocates
• Series of 6 information workshops about end of life issues (Sixty people attended at least one workshop, with a total of 155 attendances across the 6 workshops). These have been recorded and are available via links under ‘Resources’ below.

There is growing interest across Europe and other Western countries in the provision of palliative care in nursing homes for older people and other similar long term care settings. A significant proportion of older people die in such care settings (approximately 20% in the UK). Given the marginalization of nursing homes for older people in mainstream society with respect to funding for care, and research, there is a need to maximize our resources and expertise.

Co-led by Dr Katherine Froggatt (Lancaster, UK) and Dr Elisabeth Reitinger, Vienna, Austria.

The Taskforce was constituted between 2010 and 2012 and aimed to identify and map the different ways of developing palliative care in long term care settings for older people across a number of European countries. The work has now been completed.

Two areas of findings have been generated:

1. An overview of the context of care in long-term care facilities is provided for 13 European countries (Austria, Belgium, France, Germany, Ireland, Italy, The Netherlands, Norway, Portugal, Spain, Sweden, Switzerland and UK).
2. Information about practice development, educational and research initiatives that had sought to develop palliative care practice within the long-term care setting were collected from each country.

A compendium of current practice interventions for long-term care settings and palliative care practitioners has been developed:
Click here to visit the page.

The table lists all initiatives by country. For further information about each example, click on the left hand code eg Aut1, and this will direct you to a further document.

For further information and to download a copy of the final report visit the:
EAPC web page