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

PACE: Comparing the effectiveness of palliative care for elderly people in long term care facilities in Europe
For more information contact: Dr Katherine Froggatt

PACE is a European funded project (FP7, 2014-2019) comparing the effectiveness of palliative care for elderly people in long term care facilities in Europe and aims to advise policy-makers on optimal palliative care practices. PACE compares the effectiveness of health care systems with and without formal palliative care structures in long term care facilities in 6 EU countries (Belgium, the Netherland, Italy, Finland, Poland, United Kingdom), and investigates the impact of a health service intervention 'Route to Success' aimed at integrating palliative care in long term care facilities' structures, on patient, family and staff outcomes and on cost-effectiveness in a cluster controlled trial.

Based on its results, PACE will develop tools to assist practitioners and policy and decision-makers to make evidence-based decisions regarding optimal palliative care practices in long term care facilities. The PACE consortium is unique in bringing together academic partners from multiple disciplines (long term care, geriatrics, palliative care, social sciences, medicine, primary care, health economics) with EU organizations tapping into the most important professional groups and policy-makers in the field, making it possible to influence research, practice, policy and public at national and international level in and beyond participating countries.

The following studies will be undertaken:

  1. Mapping palliative care systems in long term care facilities in Europe
  2. Comparing the effectiveness of palliative care in long-term care in Europe through national surveys
  3. Cluster controlled trial to study the impact of a palliative care intervention
Applicants: Lieve Van den Block (VUB Belgium). Lancaster staff: Sheila Payne, Katherine Froggatt, Hazel Morbey
Funded by: EU FP7
Project start date: 01 February 2014
Project end date: 31 January 2019
Resources: Further information
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:

 

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