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FamilyCare Carer Support Services - West Hume Investigating Gaps for Rural Carers through Research Victorian Carer Services Network Best Practice Forum – August 2010 Carol Reid & Lynne Harmer. Introduction. When does the caring role end? When does carer burden end?

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slide1

FamilyCare Carer Support Services - West Hume

Investigating Gaps for Rural Carers

through Research

Victorian Carer Services Network

Best Practice Forum – August 2010

Carol Reid & Lynne Harmer

slide2

Introduction

  • When does the caring role end?
  • When does carer burden end?
  • When do carer support services end?
slide3

Introduction

“Exploring the role of the carer: at home and in the aged care setting”

slide4

Introduction

  • More programs need to provide social interaction for carers and care recipients
  • Hard to adjust when services stop after entry into Residential Aged Care Facility
slide5

Introduction

  • Direct written quotes from the study
  • “put him away”
  • “let her down”
slide6

Introduction

Themes

  • Appreciative of service assistance
  • Services supported their caring role
  • Appreciated quality of care at RACF
  • Reciprocal care – giving back to aged parents
slide7

Introduction

“This group are no longer carers as they don’t receive a Centrelink carer payment”

slide8

Primary Health Care Research Evaluation and Development Program (PHCRED) 2009 University of Melbourne School of Rural Health Shepparton. Funded by DoHA.

Exploring the role of the carer:

at home and in the aged care setting

Research Fellow: Carol Reid

Carer Support Coordinator Familycare 19 Welsford St

Shepparton 3630

Ph: 58 23 7081

creid@familycare.net.au

Research Supervisor: Associate Professor

Julie Pallant

Director of Research and Graduate Studies

Rural Health Academic Centre

University of Melbourne

jpallant@unimelb.edu.au

slide9

The Literature

  • Key words searched: carer, burden, attitude,
  • aged care, residential aged care facility
  • Multiple carer studies
  • Variety of concepts researched
  • Range of countries
slide10

The Literature Review

  • Caring role continues in the RACF
  • Active and direct caring role maintained
  • Continues over time
  • Responsibilities are similar
slide11

Research Methodology

  • Cross sectional (two groups)
  • Quantitative

Ethics approval under a minimal risk application by the School of Rural Health Human Ethics Advisory Group at the University of Melbourne (HREC number: 932313.1)

slide12

Aim

To examine and compare carer burden

and role attitude in the two settings of

Community and Residential Aged Care

Facility (RACF)

slide13

Definition of Carer Burden

Carer Burden is the subjective belief

that current and future resources are

inadequate to meet role demands1

1 O’Rourke N., Tuokko H., Psychometric Properties of an Abridged Version of the

Zarit Burden Interview Within a Representative Canadian Caregiver Sample, The Gerontologist,

2003; 43(1): 121-127

slide14

Method

  • Postal questionnaire
  • West Hume Region
  • (5 LGA’s)
  • Participant criteria
  • Participant sources
slide15

Method

  • Measures:
  • Zarit Burden Interview (short version ZBI)2
  • Attitude to Caring Role Scale (ACRS)
  • Specifically developed for this study

2 Bedard M., Molloy W., Squire L., Dubois S., Lever J., O’Donnell M.

The Zarit Burden Interview: A New Short Version and Screening Version’,

The Gerontologist, 2001; 41(5): 652 - 657

slide16

Measures

  • Zarit Burden Interview (ZBI Short Version)3
  • 12 items
  • Good reliability
  • Scale: 0 (never) to 4 (nearly always)
  • Range 0 - 48
  • Score 16 and above indicates high burden
slide17

Measures

Attitude to Caring Role Scale (ACRS)

  • Developed for this study
  • Example questions
  • My role as a carer adds meaning to my life
  • My role as a carer is a worthwhile role
slide18

Results

  • Total = 90 Respondents
  • Community setting 61% (n = 55)
  • RACF setting 39% (n = 35)
  • Male 26% (n = 23)
  • Female 74% (n = 67)
slide19

Results

  • Reasons for care:
  • Cognitive
  • Dementia, Alzheimer's disease, memory loss,
  • confusion
  • Loss of independent self care
  • Poor mobility, falls, incontinence, arthritis
  • and joint problems, frail and frail aged
slide20

Results

  • Carer Burden – Zarit Burden Interview totals
  • Higher burden present in both groups of carers
  • No statistically significant difference between
  • burden scores for carers in the Community
  • setting and carers in the RACF setting.
slide21

Results

  • Attitude to Caring Role Scale – (ACRS)
  • High positive attitude to the caring role across
  • this group of carers
slide22

Results

  • “Do carers in the Community setting and carers in the RACF setting differ in their attitude to the caring role?”
  • A small but statistically significant difference
  • Higher positive attitude in RACF (median = 20)
  • Community setting (median = 18)
slide23

Results

  • “Is there a relationship between levels of
  • Carer Burden and the Attitude to the Caring Role?”
  • Pearson’s correlation: r = -.20 (p = .08)
  • Very weak, non – significant association
  • between burden and attitude to the caring role
  • Higher levels of burden do not necessarily lead
  • to negative perceptions of the caring role
slide24

Results

“Is there anything else you would like to share

with us about your role as a carer?”

Main themes:

1. Service system

2. Rural issues

3. Reciprocal care

4. Family Issues

5. Time demands

6. Carer Voice

7. Loss/grief/guilt

8. Relationship

slide25

Results

  • Rural Issues
  • Travel times
  • Long waiting lists
  • Availability of transport options
  • Lack/limited services
slide26

Results

  • Carer Voice
  • “Thanks for your interest”
  • “Thanks for asking”
  • “Hope this helps with carer studies”
slide27

Results

  • Time demands
  • Limitations on life
  • Life on hold
  • Multiple chores, not just direct care; banking, transport, shopping, errands, appointments, travel time, visiting
slide28

Results

  • Service system
  • Fragmented & difficult to navigate
  • Lack of knowledge, advice, awareness of
  • services
  • Equity and access
  • Management of services not local
slide29

Discussion

  • This research was unique
  • The Caring role continues after placement
  • Converting data into a meaningful response
slide30

Formulating a service response

  • Best Practice
  • Pilot Project
slide31

Best Practice

  • Responding to unmet carer need
  • Liaison with service providers and the community to promote supports available for carers
slide32

Improve Liaison

  • From the study 91% (n=82) of carers saw their GP as the initial source of support
  • Referrals to Carer Support from GP’s limited
  • Carers find services difficult to navigate and fragmented
slide33

Pilot project

‘Caring away from Home’

slide34

Pilot project

  • First Step:
  • Flexibility of service guidelines to be inclusive of carers in the RACF setting
  • Access for these carers to current activities
slide35

Project Aim

  • Relieve carer burden with emotional and peer support and education
  • Social Connectedness
  • Restructure a new caring role
slide36

Project Outline

  • Collaborate with local RACF’s
  • Access to planned carer outings, information and education days
slide37

Project Outline

  • Formation of a Support Group
  • Carer ‘Connection Worker’ to visit RACF’s
  • Explore rural carer needs and links to community options
slide38

Project Outcomes:

  • Equity in carer support services
  • Encourage mentoring
  • Demystify and de-stigmatise entry into aged care
  • Evaluation of project
slide39

Conclusion

Lynne's 3 questions

1. When does the caring role end?

2. When does carer burden end?

3. When do carer support services end?

slide40

Conclusion

When does the value of the

caring role end?

slide41

Acknowledgements

  • Supervisor: Associate Professor Julie Pallant,
  • Director of Research Studies,
  • University of Melbourne, School of Rural Health
  • Familycare Carer Support Services
  • West Hume RACF’s
  • West Hume Carer Support Groups
  • Project Funded by PHCRED & DoHA