Enhancing Care for Older People and Family Carers: International Impacts on Practice, Guidelines and Policy
Submitting InstitutionUniversity of Sheffield
Unit of AssessmentAllied Health Professions, Dentistry, Nursing and Pharmacy
Summary Impact TypeSocietal
Research Subject Area(s)
Medical and Health Sciences: Public Health and Health Services
Summary of the impact
This case study demonstrates how programmes of research led by the
University of Sheffield since 1995 have generated theoretical models and
implementation tools that have had considerable significance and reach in
a diverse number of areas.
There have been impacts on:
Care and Education Practice, with over 1,250
managers/practitioners completing leadership programmes and a more
widespread adoption by the practitioner community.
Service improvements, with thousands of family carers and older
people having an enhanced service-user experience.
Public and practitioner debate, as the work has been shared
with the residents and workers in 18,000 care homes.
International policy guidelines, where it has informed the
generation of quality standards in care homes throughout Europe.
Policy debates, where the research has featured prominently in
discussions about achieving dignity in care.
Providing high quality support for older people and family carers is of
global significance and reach. Recent reports have highlighted how much
needs to be done to improve current practice. Research undertaken at, or
led by, the University of Sheffield since 1995 developed two new
approaches to work with older people and carers (The `Carers as Experts'
model and the `Senses' Framework). Each approach has associated
implementation tools (CADI/CASI/CAMI; COPE; COAT for carers; and the CARE
Profiles for the Senses). These approaches have fundamentally altered
thinking and practice in the field.
The empirical development and testing of the `Carers as experts' model
began with the 1996-1999 €3.3 million EU-funded ACTION project, initiated
by Sheffield and involving 5 European countries. This demonstrated the
practical benefits of the model delivered via the medium of Information
and Communication Technology. A later EU-funded study on carers
(1998-2001, €330,000), again initiated by Sheffield, involved Professor
Mike Nolan (University of Sheffield since 1995), Professor Ian Philp
(University of Sheffield 1994-2009) and Dr Kevin McKee (University of
Sheffield 1994- 2009) working with 6 European partners to develop and test
a short carer assessment instrument (COPE) [R1,R2]. This project resulted
in the EUROFAMCARE study (2002-2005, €2.5 million, Sheffield as UK lead)
that generated background reports on the state of carer policy in 23
European countries and involved institutions from 6 countries (including
Sheffield) in conducting 1,000 carer surveys to further refine COPE and to
develop and test carers' preferred models of service delivery [R3].
Subsequent studies undertaken in Sweden and Canada (with Nolan as
scientific lead and co- applicant) further refined the application of the
Carers as Experts model as a new way for practitioners to engage carers as
partners and co-experts (the Carers Outcome Agreement Tool: COAT) [R6].
These studies generated funding of over 40 million Swedish Krona over 10
years (approximately £4m). COAT is now in widespread use in Sweden and
parts of the UK.
Research on the `Senses' Framework began during the influential `Dignity
on the Ward' campaign (1999-2000) funded by Help the Aged in response to
the national outcry against poor standards of hospital care for older
people. The study used `Senses' Framework to identify the components of an
`enriched' care environment and for the first time turned attention to
outcomes for older people, staff and family carers together. The framework
was further developed in the largest ever study of nurse education in
relation to older people (ENB AGEIN 1999-2004) that adopted `Senses'
Framework when defining an `enriched' learning environment for students
working with older people. This highlighted the importance of the practice
placement in the formation of attitudes towards older people. Based on
this Davies (University of Sheffield from 1994-2006) received a
prestigious Department of Health Postdoctoral Fellowship (2002-2005) to
develop and evaluate ways to introduce `Senses' Framework into routine
practice in care homes. This resulted in the practice change tool, the
CARE profiles (Combined Assessment of Residential Environments).
Subsequently we have completed a major SDO funded project (Dignity on the
Ward, 2006-2010) that used `Senses' Framework to explain the factors that
influence culture change in acute hospitals. This has generated further
practice change tools based on the CARE profiles but applied in acute
contexts. This work has been used to develop a leadership programme for
clinical managers working with older people [R4, R5].
References to the research
R1. McKee, K, Spazzafumo, L, Nolan, M, Wojszel, B,
Lamura, G and Bien, B (2009) Components of the difficulties, satisfactions
and management strategies of carers of older people: A principle component
analysis of CADI-CASI-CAMI. Aging and Mental Health, 13(2):
255-264. doi: 10.1080/13607860802342219
R2. Balducci, C, Mnich, E, McKee, K J, Lamura, G, Beckmann, A,
Krevers, B, Wojszel, Z B, Nolan, M, Prouskas, C, Bien, B and
Öberg, B (2008) Negative impact and positive value in caregiving:
Validation of the COPE Index in a six-country sample of carers. The
Gerontologist, 48(3): 276-286. doi: 10.1093/geront/48.3.276
R3. Lamura, G, Mnich, E, Nolan, M, Wojszel, B, Krevers, B,
Mestheneos, M and Döhner, H (2008) Family Carers' Experiences Using
Support Service in Europe: Empirical Evidence From the EUROFAMCARE Study.
The Gerontologist, 48(6): 752-771. doi: 10.1093/geront/48.6.752
R4. Patterson, M, Nolan, M, Rick, J, Brown, J, Adams, R and
Musson, G (2011) From Metrics to meaning: Culture change and
quality of acute hospital care for older people. Final report to NCCSDO.
R6. Levesque, L, Ducharme, F, Caron, C, Hanson, E, Magnusson, L, Nolan,
J, and Nolan, M (2010) A partnership approach to service needs
with family caregivers of an ageing relative living at home: A qualitative
analysis of the experiences of caregivers and practitioners. International
Journal of Nursing Studies, 47 (7), 876-887 doi: 10.1016/j.ijnurstu.2009.12.006
Details of the impact
Since 2008, this research has had a significant impact in a number of
Care and Education Practice
Leadership programmes: Over 1,250 clinical/service managers and
other practitioners in health and social care have undertaken leadership
programmes explicitly based on the `Senses' Framework. Over 400 of these
have been care home managers on the MyHomeLife leadership support
and community development programme. This programme was singled out for
praise in the NHS confederation `Achieving Dignity' Report. Over 850
nurses, midwives and AHP's have been through a range of `Senses' Framework
based leadership programmes in NHS Lothian. The Head of Corporate and
Clinical learning for Lothian notes that the `Senses' Framework have been
at the `core' of their Leadership Programmes over the last 6 years and
that they have become `embedded' into practice and thinking, leading to
improved outcomes for staff, patients and their families [S8].
Practitioners using the research findings in conducting their work:
The carer assessment indices CADI/CASI/CAMI have been translated into over
20 languages and are in widespread use globally. As noted above, the COAT
assessment model is used by practitioners in 104 Swedish municipalities
and in the City and County of Swansea. It has been validated for use in
An indication of the significant practitioner interest in this work is
apparent in the 25 invited keynote addresses given to national and
international practitioner conferences in the UK, Europe and Australasia
on either the `Senses' Framework or the `Carers as Experts' model between
Enhanced Service User Experiences
Over one third (104/290) of all Swedish municipalities are users of the
Carers Outcome Agreement Tool (COAT). The Head of Services for Older
People in Jonkoping Municipality (one of Europe's leading centres for
innovation in geronotological practice) notes that COAT provides the basis
for all family carer support, improving assessment of need and subsequent
Both `Carers as Experts' and The `Senses' Framework have driven an
extensive programme of service redesign undertaken by the City and County
of Swansea. The Planning Officer for Older People has confirmed that this
has resulted in major culture change and enhanced service delivery
impacting on over 700 family carers, 400 older people and over 100 staff.
Estimated saving in one service alone is over £150K annually [S5].
Decisions by regulatory bodies informed
The Inspection Standards produced for Care Homes by the Care Quality
Commission (Scotland) and applied to all care homes in Scotland drew
significantly on `Senses' Framework in defining their quality criteria.
This focussed attention to a broader conceptualisation of quality that
engaged older people and carers more fully in the assessment process.
Public and practitioner debate informed
The on-going and increasingly important public debate about the future
role and status of care homes is being led across all four home countries
by Age UKs' `My Home Life' campaign, impacting on 18,000 care
homes and over 400,000 older people. The Executive Director of the My
Home Life Programme states: `Relationship-centred care and the `Senses'
Framework underpins My Home Life's vision for best practice which has
crossed national boundaries. MHL has shared this evidence-based and
relationship-centred vision with 18,000 care homes and over 400 care
home managers have been supported through the MHL leadership support and
community development programme'
Influence on International Policy Guidelines
The EU `PROGRESS' initiative for Employment and Social Solidarity
produced guidelines on indicators for the measurement of impact in care
homes throughout Europe. This large-scale collaborative project
synthesised the best research in the field across Europe and engaged a
wide range of experts in extensive Delphi surveys. Hundreds of pieces of
research were consulted and yet one fifth (18/94) of the quality
indicators generated were based exclusively on the CARE profiles developed
during research undertaken at Sheffield [S3].
The model of partnership working encapsulated in the Carers as Experts
model was used as the conceptual basis for the Carers National Competence
Centre in Sweden. It has been highly influential in other policy
developments in Sweden.
Policy debate informed
The `Senses' Framework was provided in verbal evidence to the influential
Commission on Dignity in Care and were one of only two programmes of
research explicitly cited in the final report [S2], `Achieving Dignity in
Care' (Recommendation 15) produced by the NHS confederation/Association of
Directors of Social Services/AGEUK. In the wake of both Francis and Keogh,
debates about dignity and compassion in care have assumed ever greater
import and the `Senses' Framework represents probably the most important
addition to this debate to have emerged in the last decade.
Sources to corroborate the impact
S1. The My Home Life website corroborates the claim that the
`Senses' Framework is the main conceptual underpinning of this initiative.
S2. The Delivering Dignity final report (p.21) corroborates the
claim that Sheffield research underpins the findings of the report (http://tinyurl.com/cque4ox).
S3. The Measuring Progress: indicators in care homes report
corroborates the claim that 18 of the 94 quality indicators were based on
Sheffield Research (pp.22, 23, 51, 57-63, 74-76, 90
S4. The ACTION website (www.actioncaring.se)
and that of the Swedish National Carers Competence Centre (www.anhoriga.se)
corroborate the claims that the Carers as Experts model was the basis for
S5. A statement from the Planning Officer for Older People, City and
County of Swansea corroborates that the `Carers as Experts' and `Senses'
Frameworks have driven an extensive programme of service redesign
undertaken by the City and County of Swansea and confirms the accompanying
S6. The EUROFAMCARE series of reports corroborate the claim that this was
the most comprehensive piece of research yet conducted into carer need
S7. A statement from the Head of Care for Older People, Jonkoping
Municipality, corroborates that COAT provides the basis for all their
family carer support and has led to improved assessment of need and
S8. A statement from the Head of Corporate and Clinical Learning NHS
Lothian corroborates that `Senses' Framework have been central to their
Leadership Programmes over the last 6 years and that they have become
embedded into practice and thinking, leading to improved outcomes for
staff, patients and their families.