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SOCIAL CARE PRACTICES WITH CARERS:
WHAT ROLE FOR CARERS’ WORKERS?
Jo Moriarty
BACKGROUND
Expansion in the number of posts with a remit to support carers in the job description
24 March 2015 NIHR SSCR Annual Conference 2
24 March 2015 NIHR SSCR Annual Conference 3
INCREASE IN NUMBER OF POSTS AIMED AT
SUPPORTING CARERS
LIMITED NUMBER OF STUDIES
EVALUATINGTHEIR IMPACT
Most existing research on Admiral
Nurses but even here harder to
get evidence on outcomes
(e.g. Bunn et al, 2010)
Cochrane review of stroke
liaison workers found patients
and carers were satisfied but no
improvements in carer subjective
health status (Ellis et al, 2010)
24 March 2015 NIHR SSCR Annual Conference 4
Descriptive and qualitative
evidence suggests thatAdmiral
Nurses are valued by family
carers but the impact of their
work is not so clearly established.
There is a need to define
outcomes that can help organise
the service and inform future
service delivery.
(Bunn et al, 2013)
METHODS
A quick overview
24 March 2015 NIHR SSCR Annual Conference 5
24 March 2015 6
• Analysis of Carers
Workers in NMDS-SC
(Hussein & Manthorpe,
2012)
• Leaflets and brochures
• Websites
• Care plans
• National survey of
councils with social
services responsibilities
• Family carers
• Carers' workers
• Voluntary
organisations
• Commissioners
Interviews Survey
National
workforce
data
Documents
NIHR SSCR Annual Conference
8
16
38
24
Commissioners
Voluntary
organisations
Carers workers
Family carers
24 March 2015 7
INTERVIEWS IN FOUR PARTS OF ENGLAND
NIHR SSCR Annual Conference
FINDINGS
Focus on a selection of findings related to the discussion today
24 March 2015 NIHR SSCR Annual Conference 8
COMPARISONS WITH NMDS-SC
(HUSSEIN & MANTHORPE, 2012)
0 50 100
Women
White
SCWP
NMDS
•Broadly similar to other carers’
workers in terms of gender &
ethnicity
•Mean age NMDS-SC workers
was 42.5
•Two-thirds SCWP 45 and over
•14% SCWP activity limitation
•2% had disability (NMDS) but
this question always produces
smaller numbers
24 March 2015 NIHR SSCR Annual Conference 9
VARIED ROUTES INTO ROLE
Carers’
worker
Professional
roles (nursing,
education, social
work,AHP)
Advice work &
community work
Unrelated
Other social care
roles (day care)
24 March 2015 NIHR SSCR Annual Conference 10
PERSONAL EXPERIENCE
Two thirds of the workers
had personal experience
of caring
24 March 2015 NIHR SSCR Annual Conference 11
I guess because I am a
[carer] I kind of understand
a lot of the things that
people go through
(Krystal, Worker33) .
DIFFERENT MODELS OF SUPPORT
•Interviews suggest carers’ workers offer different types of
support
• Outreach
• Giving information or ‘signposting’
• Advocacy – for example, attending assessments/meetings
• ‘Being there’ - ‘being a listening ear’ support
• Counselling
• Community development
• Co-working with other professionals
• These roles often combined – comparisons with social work where
becoming more segmented
24 March 2015 NIHR SSCR Annual Conference 12
NAVIGATING
24 March 2015 NIHR SSCR Annual Conference 13
…trying to get [this carer] to understand
the terminologies that are being used … is
really difficult on the phone. Hence [I am]
going to … take … leaflets that have
information about the diagnosis that [her
husband] has … I think I need to go and do
a home visit and sit down and do a face to
face and get her to understand a little bit
(Worker20)
And I thought I’d put together a[n
information sheet for parents. And
I visited the Carers Centre in order
to get some more information, and
realised what a fantastic place it
was, and maybe I should have gone
there earlier myself! So, I used their
support services, certainly, to help
filling in forms
(Carer20)
‘A LISTENING EAR’
24 March 2015 NIHR SSCR Annual Conference 14
This lady phoned up and said that … she
just felt that she was floundering ... she
just wanted to talk things through. She
wanted the opportunity to offload. So she
came in and we had a coffee together and
we talked things through… And as a result
of us talking that through for an hour, she
made certain decisions about how she was
gonna handle things in a different way and
about her approach
(Worker17)
Being a trained counsellor,
[Keira’s] s been able to give me
a lot of sort of support and just
someone to talk to who is just
there for me and I know that I
can call … She’s always got
time to talk, which is lovely.
She’s been a real rock
(Carer20)
THEWHOLE PICTURE
24 March 2015 NIHR SSCR Annual Conference 15
Because I’m a counsellor and because
they often come in in quite a high
emotional state, obviously that area of
needs takes quite a lot of precedence. I
do all kinds of things. I will find out
from them what they need. [debt,
accommodation, benefits] ... It’s
practicalities as well as the more
esoteric stuff.
(Worker31)
It’s not possible for me to carry
out face to face meetings all the
time. Sometimes carers don’t
want or require that. Sometimes
they want face to face.The
reason why I pick that out as
being the most important is
because then you actually are
dealing with their issues then
(Worker30)
ADVOCACY
24 March 2015 NIHR SSCR Annual Conference 16
I'm just there to make sure that the carer
understands …'cause they [other professionals]
do tend to use too many words that are too
[jargon ridden] and … sometimes you have to
go, ‘Excuse me, what does [abbreviation] mean,
and some of them don't even know what it
means, but they say them. So I think it’s getting
the point across that the carer needs to
understand what's being said about their family
member or about the care plan and everything
(Worker20)
It would be very difficult for her
to go into the sort of respite
offered. [Daughter] doesn’t mix
well within a group of people,
she’d probably withdraw and her
behaviour would not be good
either to myself or in general to
the people who are looking after
her
(Carer3).
CONTEXT OF CARE ACT 2014
•Three especially important aspects for carers
•Information and advice – delays in accessing timely and
relevant advice
•Promoting wellbeing – wellbeing levels compared with general
population
•Preventing, reducing or delaying needs – impact of long term
caring (‘dripping tap’ comparison)
24 March 2015 NIHR SSCR Annual Conference 17
DISCUSSION
•Recognition that this is exploratory study
•Need to develop outcome measures that are closer to
the concerns of carers
•Potential to explore in terms of staff retention/burnout
too
•Recognition that balance of different roles will vary in
different circumstances
24 March 2015 NIHR SSCR Annual Conference 18
ACKNOWLEDGEMENT AND DISCLAIMER
•This presentation includes
independent research
funded by the NIHR School
for Social Care Research.
The views expressed in
this presentation are those
of the authors and not
necessarily those of the
NIHR School for Social Care
Research or the
Department of
Health/NIHR
24 March 2015 NIHR SSCR Annual Conference 19
THANKSTO….
24 March 2015 NIHR SSCR Annual Conference 20
 Everyone who was interviewed or who returned a
survey
 Lizzy, Jenny, Mark, and Carolyn who helped with
interviewing
 Lizzy for help with data entry and coding
 Virtual Outsourcing, Laptop Confidential and
Voicescript who did the transcribing
 The Project Advisory Group and the Unit Service User
and Carer Advisory Group
 To NIHR SSCR for funding
 To you for listening!
SOURCES AND REFERENCES
Slide
number
Source
1 From Carers inWiltshire website: http://carersinwiltshire.co.uk/our-services/gp-support/
3 Job advertisement http://www.mvsc.co.uk/news/dementia-carer-outreach-support-worker Personal
budget http://www.carers.org/sites/default/files/supporting_carers_the_case_for_change.pdf Carers
SupportWorker http://www.carerstrustcambridgeshire.org/wp-content/uploads/2015/02/CSW-Job-
Description-Nov-2014.pdf
4 Bunn et al, 2013
http://researchprofiles.herts.ac.uk/portal/files/7084786/AdmiralNurse_Evidence_Synthesis_Final_Rep
ort17.10.13.pdf
4 Ellis et al, 2010 http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD005066.pub2/abstract
24 March 2015 NIHR SSCR Annual Conference 21

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What role for carers' workers?

  • 1. SOCIAL CARE PRACTICES WITH CARERS: WHAT ROLE FOR CARERS’ WORKERS? Jo Moriarty
  • 2. BACKGROUND Expansion in the number of posts with a remit to support carers in the job description 24 March 2015 NIHR SSCR Annual Conference 2
  • 3. 24 March 2015 NIHR SSCR Annual Conference 3 INCREASE IN NUMBER OF POSTS AIMED AT SUPPORTING CARERS
  • 4. LIMITED NUMBER OF STUDIES EVALUATINGTHEIR IMPACT Most existing research on Admiral Nurses but even here harder to get evidence on outcomes (e.g. Bunn et al, 2010) Cochrane review of stroke liaison workers found patients and carers were satisfied but no improvements in carer subjective health status (Ellis et al, 2010) 24 March 2015 NIHR SSCR Annual Conference 4 Descriptive and qualitative evidence suggests thatAdmiral Nurses are valued by family carers but the impact of their work is not so clearly established. There is a need to define outcomes that can help organise the service and inform future service delivery. (Bunn et al, 2013)
  • 5. METHODS A quick overview 24 March 2015 NIHR SSCR Annual Conference 5
  • 6. 24 March 2015 6 • Analysis of Carers Workers in NMDS-SC (Hussein & Manthorpe, 2012) • Leaflets and brochures • Websites • Care plans • National survey of councils with social services responsibilities • Family carers • Carers' workers • Voluntary organisations • Commissioners Interviews Survey National workforce data Documents NIHR SSCR Annual Conference
  • 7. 8 16 38 24 Commissioners Voluntary organisations Carers workers Family carers 24 March 2015 7 INTERVIEWS IN FOUR PARTS OF ENGLAND NIHR SSCR Annual Conference
  • 8. FINDINGS Focus on a selection of findings related to the discussion today 24 March 2015 NIHR SSCR Annual Conference 8
  • 9. COMPARISONS WITH NMDS-SC (HUSSEIN & MANTHORPE, 2012) 0 50 100 Women White SCWP NMDS •Broadly similar to other carers’ workers in terms of gender & ethnicity •Mean age NMDS-SC workers was 42.5 •Two-thirds SCWP 45 and over •14% SCWP activity limitation •2% had disability (NMDS) but this question always produces smaller numbers 24 March 2015 NIHR SSCR Annual Conference 9
  • 10. VARIED ROUTES INTO ROLE Carers’ worker Professional roles (nursing, education, social work,AHP) Advice work & community work Unrelated Other social care roles (day care) 24 March 2015 NIHR SSCR Annual Conference 10
  • 11. PERSONAL EXPERIENCE Two thirds of the workers had personal experience of caring 24 March 2015 NIHR SSCR Annual Conference 11 I guess because I am a [carer] I kind of understand a lot of the things that people go through (Krystal, Worker33) .
  • 12. DIFFERENT MODELS OF SUPPORT •Interviews suggest carers’ workers offer different types of support • Outreach • Giving information or ‘signposting’ • Advocacy – for example, attending assessments/meetings • ‘Being there’ - ‘being a listening ear’ support • Counselling • Community development • Co-working with other professionals • These roles often combined – comparisons with social work where becoming more segmented 24 March 2015 NIHR SSCR Annual Conference 12
  • 13. NAVIGATING 24 March 2015 NIHR SSCR Annual Conference 13 …trying to get [this carer] to understand the terminologies that are being used … is really difficult on the phone. Hence [I am] going to … take … leaflets that have information about the diagnosis that [her husband] has … I think I need to go and do a home visit and sit down and do a face to face and get her to understand a little bit (Worker20) And I thought I’d put together a[n information sheet for parents. And I visited the Carers Centre in order to get some more information, and realised what a fantastic place it was, and maybe I should have gone there earlier myself! So, I used their support services, certainly, to help filling in forms (Carer20)
  • 14. ‘A LISTENING EAR’ 24 March 2015 NIHR SSCR Annual Conference 14 This lady phoned up and said that … she just felt that she was floundering ... she just wanted to talk things through. She wanted the opportunity to offload. So she came in and we had a coffee together and we talked things through… And as a result of us talking that through for an hour, she made certain decisions about how she was gonna handle things in a different way and about her approach (Worker17) Being a trained counsellor, [Keira’s] s been able to give me a lot of sort of support and just someone to talk to who is just there for me and I know that I can call … She’s always got time to talk, which is lovely. She’s been a real rock (Carer20)
  • 15. THEWHOLE PICTURE 24 March 2015 NIHR SSCR Annual Conference 15 Because I’m a counsellor and because they often come in in quite a high emotional state, obviously that area of needs takes quite a lot of precedence. I do all kinds of things. I will find out from them what they need. [debt, accommodation, benefits] ... It’s practicalities as well as the more esoteric stuff. (Worker31) It’s not possible for me to carry out face to face meetings all the time. Sometimes carers don’t want or require that. Sometimes they want face to face.The reason why I pick that out as being the most important is because then you actually are dealing with their issues then (Worker30)
  • 16. ADVOCACY 24 March 2015 NIHR SSCR Annual Conference 16 I'm just there to make sure that the carer understands …'cause they [other professionals] do tend to use too many words that are too [jargon ridden] and … sometimes you have to go, ‘Excuse me, what does [abbreviation] mean, and some of them don't even know what it means, but they say them. So I think it’s getting the point across that the carer needs to understand what's being said about their family member or about the care plan and everything (Worker20) It would be very difficult for her to go into the sort of respite offered. [Daughter] doesn’t mix well within a group of people, she’d probably withdraw and her behaviour would not be good either to myself or in general to the people who are looking after her (Carer3).
  • 17. CONTEXT OF CARE ACT 2014 •Three especially important aspects for carers •Information and advice – delays in accessing timely and relevant advice •Promoting wellbeing – wellbeing levels compared with general population •Preventing, reducing or delaying needs – impact of long term caring (‘dripping tap’ comparison) 24 March 2015 NIHR SSCR Annual Conference 17
  • 18. DISCUSSION •Recognition that this is exploratory study •Need to develop outcome measures that are closer to the concerns of carers •Potential to explore in terms of staff retention/burnout too •Recognition that balance of different roles will vary in different circumstances 24 March 2015 NIHR SSCR Annual Conference 18
  • 19. ACKNOWLEDGEMENT AND DISCLAIMER •This presentation includes independent research funded by the NIHR School for Social Care Research. The views expressed in this presentation are those of the authors and not necessarily those of the NIHR School for Social Care Research or the Department of Health/NIHR 24 March 2015 NIHR SSCR Annual Conference 19
  • 20. THANKSTO…. 24 March 2015 NIHR SSCR Annual Conference 20  Everyone who was interviewed or who returned a survey  Lizzy, Jenny, Mark, and Carolyn who helped with interviewing  Lizzy for help with data entry and coding  Virtual Outsourcing, Laptop Confidential and Voicescript who did the transcribing  The Project Advisory Group and the Unit Service User and Carer Advisory Group  To NIHR SSCR for funding  To you for listening!
  • 21. SOURCES AND REFERENCES Slide number Source 1 From Carers inWiltshire website: http://carersinwiltshire.co.uk/our-services/gp-support/ 3 Job advertisement http://www.mvsc.co.uk/news/dementia-carer-outreach-support-worker Personal budget http://www.carers.org/sites/default/files/supporting_carers_the_case_for_change.pdf Carers SupportWorker http://www.carerstrustcambridgeshire.org/wp-content/uploads/2015/02/CSW-Job- Description-Nov-2014.pdf 4 Bunn et al, 2013 http://researchprofiles.herts.ac.uk/portal/files/7084786/AdmiralNurse_Evidence_Synthesis_Final_Rep ort17.10.13.pdf 4 Ellis et al, 2010 http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD005066.pub2/abstract 24 March 2015 NIHR SSCR Annual Conference 21