Improving the end of life care for people with advanced dementia and their informal carers: a method of developing a complex intervention using a whole systems UK wide approach
Jones, L. Harrington, J. Lord, Kathryn Davis, S. Chan, D. Vickerstaff, V. Scott, S. Candy, B. Round, J. Sampson, E.L.
Jones, L.
Harrington, J.
Lord, Kathryn
Davis, S.
Chan, D.
Vickerstaff, V.
Scott, S.
Candy, B.
Round, J.
Sampson, E.L.
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2014
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Abstract
Complete : FC 16.
We aimed to develop a complex intervention
to improve end of life care (EOLC) for people with
advanced dementia and their carers. We collected data
from 4 sources: literature review; qualitative data from
health and social care professionals, carers and people
with early dementia; quantitative data from people with advanced dementia and their carers; review of UK health
and social care policy documents.
Method and results: To develop the intervention we synthesised
these data. 49 emerging statements were considered
in workshops with health and social care professionals
across UK to achieve consensus using the RAND Appropriateness
Method (RAM) to develop components of the
intervention.
1. Prior to workshops we sent invitees the RAM
form consisting of 49 statements and asked them
to rate these on a scale of 1-9 for appropriateness.
2. At the workshops statements rated as ‘uncertain’
or ‘inappropriate’ were discussed and all 49 items
were rated again.
3. Analysis resulted in the retention of 29 statements
rated as appropriate.
4. Post workshop attendees were sent the RAM form
and asked to rate 29 statements for necessity.
All 29 statements were rated as necessary and retained
then mapped onto impact theories (Grol 2007) comprised
of individual, social interaction, organisational or political/
economic context, and categorised as enablers and barriers
for an intervention.
Three core intervention components emerged:
1. Integrated systems and approaches to the delivery
of careoperational plan
2. Education, training and support for health and
social care professionals and carers - utilisation
plan
3. Political and economic context dependent on
reimbursement and contracting through CCG
commissioning.
Discussion: The next phase is to pilot components 1 and 2
of the intervention in a naturalistic experiment in one inner
city and one suburban locality at different stages of development
for services for EOLC for people with dementia
and their carers.
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Jones L, Harrington J, Lord K et al (2014) Improving the End of Life Care for People with Advanced Dementia and their Informal Carers: A Method of Developing a Complex Intervention Using a Whole Systems UK Wide Approach [Conference paper]. Palliative Medicine 28(6):563. [Abstracts of the 8th World Research Congress of the European Association for Palliative Care (EAPC), Lleida, Spain 5–7 June 2014. Asbstract No: FC 16].
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