How well are we delivering for carers a report on the baseline findings
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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.

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How Well Are We Delivering for Carers? A Report on the Baseline Findings

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How well are we delivering for carers a report on the baseline findings
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
Complexity Baseline Findings

  • The Aims and Objectives of the Projects are Ambitious

  • Across Systems

  • Not a Simple Linear Process


Evaluative roadmap
Evaluative Roadmap Baseline Findings

  • 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
Experience of Carers - Questionnaire Baseline Findings

  • 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 demographics1
Experience of Carers – Questionnaire: Demographics Baseline Findings

  • 85% women

  • 96% white

  • 28% caring for husband

  • 20% caring for disabled child

  • 25% caring for parent or in-law


Experience of carers questionnaire demographics2
Experience of Carers - Questionnaire: Demographics Baseline Findings

  • 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 questionnaire1
Experience of Carers – Questionnaire Baseline Findings

  • On many measures carers’ report variable experiences, i.e. responses spread evenly across “very poor” to “excellent”





Experience of carers questionnaire2
Experience of Carers – Questionnaire Carer

  • 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
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 partnership working
Experience of Carers – Questionnaire: Partnership Working Experiences

  • 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
Carers Centre Data on “Moffat” Carers Experiences

  • 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 carers1
Carers Centre Data on “Moffat” Carers Experiences

  • 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
Baseline Interviews and Focus Groups Experiences

  • 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
Key Messages from Baseline Interviews and Focus Groups Experiences

  • 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 groups1
Key Messages from Baseline Interviews and Focus Groups Experiences

  • 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
In Summary Experiences

  • 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


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