How Well Are We Delivering for Carers? A Report on the Baseline Findings Timothy B. Kelly, PhD Glasgow Caledonian University School of Health and Social Care
Jan 01, 2016
How Well Are We Delivering for Carers? A Report on the Baseline Findings
Timothy B. Kelly, PhD
Glasgow Caledonian University
School of Health and Social Care
Complexity
The Aims and Objectives of the Projects are Ambitious
Across Systems Not a Simple Linear Process
Evaluative Roadmap
Questionnaires to Document Carers’ Experiences of Hospitalisation & Post-Hospitalisation
Data Collected by Carers Centre During Process of Working with Carers
Interviews and Focus Groups with Key Stakeholders and Project Workers
Data Collected about Training and other Activities Provided to Partners
Experience of Carers - Questionnaire
Questionnaire sent to 2500 carers on Carer Centres’ databases
Questionnaire Focused on Hospitalisation & Post Hospitalisation Experience
137 returned with recent hospitalisation
Experience of Carers – Questionnaire: Demographics
Age of Carers
0
10
20
30
40
50
60
Under 18 18-29 30-44 45-64 Over 65
Per
cen
tag
e
Experience of Carers – Questionnaire: Demographics 85% women 96% white 28% caring for husband 20% caring for disabled child 25% caring for parent or in-law
Experience of Carers - Questionnaire: Demographics Heavy duty carers
Caring for 8.6 years on average 64% provide care more than 50 hours per week
Expected Conditions Represented in People Being Cared For: Dementia (16%)Heart Disease (15%), Stroke
(12%), Lung Disease, Neurological Disease, Cancer & Mental Illness (10% each), others (10%)
Experience of Carers – Questionnaire
On many measures carers’ report variable experiences, i.e. responses spread evenly across “very poor” to “excellent”
Experience of Carers – Questionnaire: Support Received from Hospital and Social Work Staff
Rating of Support Received
0
5
10
15
20
25
30
0 1 2 3 4
Rating (0 = Very Poor, 4= Excellent)
Per
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Experience of Carers – Questionnaire: Percentage Consulted During Admission
Consulted During Admission
05
101520253035
0 1 2 3 4
0=Not at all, 4 = Fully
Experience of Carers – Questionnaire: Feel Supported as a Carer
Feel Supported As A Carer
0
5
10
15
20
25
30
0 1 2 3 4
0 = Not at All, 4 = Fully
Per
cen
tag
e
Experience of Carers – Questionnaire
On many measures carers report variable experiences, i.e. responses spread evenly across “very poor” to “excellent”
On some measures carers report experiences more heavily weighted towards the negative
Experience of Carers – Questionnaire: “Negative” Experiences 66% of respondents not asked if they were a
carer during hospitalisation Only 9% offered practical training in relation
to the care required for the condition of the cared for person during hospitalisation
Only 15% of carers indicated receiving training post-discharge
Only 14% were informed of their right to a Carer’s Assessment
Experience of Carers – Questionnaire: “Negative” Experiences
Carers Views and Needs Taken into Account During Discharge
0102030405060
0 1 2 3 4
0 = Not at All, 4 = Fully
Per
cen
tag
e
Experience of Carers – Questionnaire: “Negative” Experiences
Physical or Mental Health Affected by Caring
05
101520253035
0 1 2 3 4
0 = Not at All, 4 = Seriously Affected
Per
cen
tag
e
Experience of Carers – Questionnaire: Partnership Working Only 29% felt their expertise was fully or
mostly recognised by service providers Only 27% felt care professionals understood
their needs as carers Only 21% felt that health, social work and
carers organisations worked together
Carers Centre Data on “Moffat” Carers
Information collected on carers being served as part of Moffat Project
Data on 107 carers though not all centres data included
Like “pre-Moffat” carers, they are Mostly middle-aged or older carers Heavy and long-term carers Have experienced negative health impacts
Carers Centre Data on “Moffat” Carers
Unlike Pre-Moffat Carers, these carers have: Mostly been informed of the right to a carers
assessment (70%) Mostly been identified as carers during
hospitalisation (88%) More likely to be involved in the discharge
process (though at 30% the figure is still low)
Baseline Interviews and Focus Groups
Project Managers (7) Key NHS and Social Care Managers (10) Moffat Project workers in each of the pilot
sites.
Key Messages from Baseline Interviews and Focus Groups Shared understanding of the vision for the
project by stakeholders at all levels Recognition of being in early days Initial process strongly supported at a
strategic level Implementation strengthened at operational
level, in the main, through provision of facilities and key contacts
Key Messages from Baseline Interviews and Focus Groups Project workers are only beginning to
establish themselves at the frontline of service delivery
Concerns expressed about best way to fit into existing provision which is by necessity patient led without having a detrimental impact
Project fits within wider policy context project objectives were problematic and
should be more realistic and measurable
In Summary
There are no surprises in the baseline questionnaires. The needs of many carers are not being met.
The carers being served by the project appear to be having a different experience though still early and we don’t know what impact that will have
Systems work is in very early days but there is strategic and operational support