Researching the Needs of Older People

Research into the needs of older people has been a core theme of work in the International Observatory on End of Life Care since 2006. This programme of research seeks to develop our understanding of the challenges faced by older people at the end of life, and how these can be overcome. This is an area of increasing importance as the population ages and the need for care for older people becomes greater. Current and recent work in this area focuses on the experiences of older people approaching the end of life, the experiences of family carers (both older carers and those supporting older people) and end of life care for those living in long term care settings. Researchers in the IOELC collaborate with other researchers, clinicians and service users to conduct high quality research using a variety of methods.

Further details about current and recently completed work are available using the links on this page.

Current projects

Both sides of the fence: using action research to improve end of life care for prisoners
For more information contact: Dr Marian Peacock

The End of Life Care Strategy for England and Wales (2008) recommends high quality palliative care for everyone who needs it, regardless of their disease or place of care. The provision of high quality end of life care for prisoners can be particularly challenging, and requires involvement from all members of the multidisciplinary team across a complex interface inside and outside of the prison.

The overall aim of this study is to devise, using action research methodology, a transferable model of integrated palliative and end of life care, that involves prison staff (both healthcare and security staff), specialist palliative care practitioners and primary care staff, to ensure the delivery of high quality care for prisoners. The following objectives will be addressed:

  • To explore the perspectives of staff from both inside and outside prison;
  • To understand the facilitators and barriers to providing good palliative care for prisoners;
  • To discover ways to enhance the facilitators and address the barriers;
  • To implement and evaluate a series of standards for palliative and end of life care in prisons - Macmillan Adopted Prison Standards (MAPS); and
  • To develop a model of working at the interface between prisons and specialist palliative care that will be transferable across prisons.

Findings from the research will be used to improve practice across UK prisons, and influence policy on end of life care for prisoners.

Applicants:

Mary Turner, Katherine Froggatt, Sheila Payne, Gill Scott, Bob Gibson, Andrew Fletcher.
Senior Research Associate: Marian Peacock.

Funded by:

Marie Curie Cancer Care

Project start date:

June 2013

Project end date:

November 2015

Resources:

Download: Project flyer
View: Project introduction video
Expanding The Impact Of Community Engagement Around Public Awareness Of End Of Life Issues
For more information contact: Dr Katherine Froggatt

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.

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.

This project is now completed and e-resource has been developed, which is available from the Resources link below:

Applicants:

Dr Katherine Froggatt, Mary Matthiesen (Stories to Change, CIC)

Funded by:

FHM Knowledge Exchange Strategic Development Award 2012

Project start date:

June 2012

Project end date:

May 2013

Resources:

See: http://www.conversationsforlife.co.uk
Age UK - Supporting Older Carers of Those Nearing the End of Life
For more information contact: Dr Hazel Morbey

A two year study commissioned by National Age UK to evaluate six local Age UK pilot projects in England who were awarded Department of Health grants to provide practical and emotional support to older cares, and to establish the potential role of trained volunteer delivered interventions in this area. The study ran from September 2011 to September 2013. Key findings from the research show that:

  • Older carer’s often have complex and multiple needs that co-exist with their cared-for relative’s complex health and welfare circumstances;
  • Reciprocal and changeable caregiving may often exist within same household caring relationships;
  • Multiple caregiving roles occur whereby older carers can be supporting spouses, siblings, their children or their sibling’s children, within their own households and in other households;
  • Emotional support is an underlying and necessary component of all forms of support provided in end of life services, whether this is practical, financial or information provision;
  • Volunteers working in the area of end of life carer support require strong, planned strategies for supervision and support.

Recommendations are made in the report for organisations providing services for older carers, for commissioners and those planning provision to meet local needs in this area, and at a national policy and funding level.

The report can be downloaded from the Resources section below:

Applicants: Professor Sheila Payne, Dr Katherine Froggatt, Professor Christine Milligan, Dr Mary Turner, Dr Hazel Morbey
Funded by: Age UK (through a Department of Health grant)
Project start date: September 2011
Project end date: August 2013
Resources: Final Report
"Unpacking the home": family carers' reflection on dying at home
For more information contact: Dr Mary Turner

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.

Applicants: Sheila Payne, Christine Milligan, Dave Seamark, Sarah Brearley, Xu Wang, Carol Thomas
Funded by: Marie Curie Cancer Care
Project start date: June 2011
Project end date: May 2013
Resources:
Peer education for end of life issues
For more information contact: Dr Katherine Froggatt

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.
Applicants: Dr Katherine Froggatt
Funded by: NHS North Lancashire, Lancashire County Council
Project start date: 2010
Project end date: Ongoing
Resources:

Seminar audio files:

EAPC Taskforce on Palliative Care in Long Term Care Settings for Older People
For more information contact: Dr Katherine Froggatt

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 and can be accessed from teh Resources section below:

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 dedicated EAPC web page, a link to which can be found in the Resources section below:

For a copy of the most recent publication, click the link in the Resources section below:

Applicants: Katherine Froggatt (UK), Elisabeth Reitinger (Austria), Katharina Heimerl (Austria), Jo Hockley (UK), Kevin Brazil (Canada), Roland Kunz (Switzerland), Deborah Parker (Australia), Bettina Sandgathe-Husebø (Norway).
Funded by: Not funded
Project start date: 2010
Project end date: 2012
Resources: Current practice interventions
EAPC Website - dedicated page
Most recent publications

 

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