Webinar 3 – End of Life Care research methods and public involvement in end of life care research

The joint INVOLVE/NIHR School for Social Care Research (SSCR) webinar on End of Life Care research methods and public involvement in end of life care research was held on Thursday 1 May 2014.

The webinar presenters:

Claire Goodman is Professor of Health Care Research at the  Centre for Research in Primary and Community Care (CRIPACC) at the University of Hertfordshire. A district nurse by background her research work focuses on the health needs and experiences of older people living at home and in care homes. She is currently leading a NIHR study that focuses on different approaches by the NHS to providing health care support to care homes. She was also a  collaborator on the recently completed RAPPORT study (Lead Professor Tricia Wilson) that looked at PPI in research.

Heather Maggs, ex-dementia carer, speaks about her experience of being involved in end of life care research:

“I was 32 when my mother died suddenly of a stroke.  Within weeks I was at my Dad’s GP discussing his dementing behaviour.  I was told this could be grief and would have to wait for two years to confirm a diagnosis.

I suspect my Mum had been shielding Dad’s behaviour from my brother, sister and myself, but that her death triggered latent morbidity into full-blown mild dementia. Two years later I was back at Dad’s GP, memory clinics and CPNs followed and after a what seemed a very long time Dad was indeed diagnosed with dementia: probably Alzheimer’s and cardio-vascular, as he’d smoked from the age of six.

I was an employee at this point, but for much of the 11 years I was Dad’s main carer I was a director of my own advertising agency, with corporate, new business and employee responsibilities.  But we got by, with a lot of laughs – and repetition!”

Sabine Best is Head of Research at Marie Curie Cancer Care, the leading charity in palliative and end of life care research. She has a particular interest in patient and public involvement and in ensuring that results from charity-funded research activities are widely distributed and accessible to patients, carers and clinicians.

The Palliative and end of life care Priority Setting Partnership (PeolcPSP) was initiated by Marie Curie Cancer Care. The partnership is being facilitated by the James Lind Alliance and there are more than 30 partnership organisations involved. The aim is to consult people likely to be in the last years of life, current and bereaved carers and family, and healthcare professionals about what questions they believe need answering through research. To find out more, visit www.palliativecarepsp.org.uk

You can view the slides from the webinar here

Better Endings is the NIHR Dissemination Centre’s first Themed Review. It brings together evidence from the NIHR, focusing largely on the quality and organisation of care. The review aims to help those delivering, planning or using end of life services to ensure that the right care is delivered in the right place at the right time.