measuring outcomes for young carers: maca,...
TRANSCRIPT
May 2012 1 Leeds, Carers Trust
Measuring outcomes for young carers:
MACA, PANOC and emerging findings
Leeds, 2nd May 2012
Professor Saul Becker
May 2012 Leeds, Carers Trust 2
Beginnings (1992)
• No reliable ‘official’ figures
• Virtually no research
• Few young carers projects or services
• No young carers law/policy
• No ‘rights’ or entitlements
• Little public or professional awareness
or recognition
Low levels of caring
and responsibility:
‘Caring about’
High levels of caring
and responsibility:
‘Caring for’
Most children
Few children
‘Routine’ levels and
types of caregiving
including some help
with Instrumental
Activities of Daily
Living
Caregiving tasks &
responsibilities
increase in amount,
regularity, complexity,
time involved,
intimacy and duration
‘Substantial, regular and
significant’ caregiving,
including considerable
help with Instrumental
Activities of Daily Living
Household tasks and
caregiving tasks can
be considered age and
culturally appropriate
Household tasks and
caregiving tasks can be
considered age and
culturally inappropriate
Children providing just
a few hours of care
and support each
week with no evidence
of negative outcomes
Young carers providing
‘full-time’ caregiving
each week with
evidence of significant
negative outcomes
Many ‘hidden’ young carers (unknown to service providers/receiving no support)
A continuum of children’s caring
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From Vulnerability …
“A young carer becomes vulnerable when the
level of care-giving and responsibility to the
person in need of care become excessive or
inappropriate for that child, risking impact on his
or her emotional or physical well-being or
educational achievement and life chances.”
ADSS/ADCS Memorandum of Understanding, 2009
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… To Growth
“…young carers should have the support they need to
learn, develop and thrive, to enjoy positive childhoods
and to achieve their full potential. We want to ensure
that young carers are actively protected from excessive
or inappropriate caring and that parents and other family
members are effectively supported. There will be a clear
and co-ordinated means of identifying and assessing
children and young people with caring responsibilities
who are providing regular care and support for someone
in their family.”
Young Carers Strategy for Nottinghamshire: Report of the Cabinet Member for Children and
Young People’s Services (September 2011)
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National Carers Strategy 2008
“Children and young people will be protected from inappropriate caring and have the support they need to learn, develop and thrive, to enjoy positive childhoods and to achieve against all the Every Child Matters outcomes.”
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Manual for Measures of Caring
Activities and Outcomes for
Children and Young People
Carers Trust 2009 and 2012
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Definitions
Aims: the areas of change you intend to achieve through your project and which stem directly from the needs of your clients
Outcomes: the changes and effects that actually happen as a result of your work, expected or unexpected, welcome or unwelcome
The outcomes you hope to see are all the specific changes that will help you to achieve your aims
Outcome change: the difference between outcome levels at
different points in time. This requires the collection of pre
intervention (baseline) and post intervention data
Outputs: what the organisation does; the services it delivers
Why measure outcomes?
• To see if the intervention is making a difference
• To identify what is working or not working
• Value for money
• Learning in order to replicate or revise interventions
• Planning purposes
• Being responsible and reflective practitioners
• Holding ourselves to account
• To satisfy commissioners and grant bodies
The need for robust measures
“A detailed evaluation of the different
approaches and their impact on young
carers and their outcomes is lacking”
National Carers Strategy, HM Government 2008
MACA-YC18
18-item self-report measure to provide an overall summary score (index) of the amount of caring activity
Young carers indicate if they do a task: never/some of the time/ a lot of the time and are then scored 0/1/2 respectively
Index of caring = the total score
0 No caring activity recorded
1 - 9 Low amount of caring activity
10 -13 Moderate amount of caring activity
14 -17 High amount of caring activity
18 plus Very high amount of caring activity
Six subscales: personal care, domestic tasks, emotional care, household management, sibling care; financial/practical management
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PANOC-YC20
20-item self-report measure to provide a score (index) of the subjective cognitive and emotional impacts of caring
There are two 10-item subscales: positive and negative impacts
Young carers indicate if they do a task: never/some of the time/a lot of the time and are then scored 0/1/2 respectively
Scores on both scales have a range of 0 - 20
Higher scores indicating greater positive and negative responses, respectively
To calculate positive response score: Sum items: 1, 2, 3, 4, 7, 8, 15,18,19, 20
To calculate negative response score: Sum items: 5,6,9,10,11,12,13,14,16,17
Scores of less than 12 on the positive scale and/or greater than 8 on the negative scale may be indicative of concern and along with other assessment processes may indicate support is required for the young carer and/or their family
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Potential uses of the tools
• Research - How many young carers are there? (BBC survey)
• Assessment of carers
• Review of progress/interventions
• Evaluation: pre-intervention and post-intervention (immediate)
post-post measuring (sustainability)
• Results can be collated to generate scores at three levels:
1) individual
2) project/service
3) programme
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May 2012 Leeds, Carers Trust 18
Officially, how many children care for a
sick/disabled parent or other family member?
50,000
125,000
175,000
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Hours per week spent caring
AGE 1 - 19
HOURS
20 - 49
HOURS
50+
HOURS
TOTAL
5 - 7 5,015 608 940 6,563 (4%)
8 - 9 7,717 752 1,055 9,524 (5%)
10 - 11 16,120 1,433 1,615 19,168 (11%)
12 - 14 46,267 4,103 3,519 53,889 (31%)
15 21,024 2,282 1,494 24,800 (14%)
16 - 17 49,711 6,935 4,406 61,052 (35%)
All 145,854 (83%) 16,113 (9%) 13,029 (8%) 174,996
Example of use of pre-intervention data
for a young carer
Katie, aged 15
MACA TOTAL 13
domestic activity 3
household management 3
financial & practical 0
personal care 1
emotional care 4
sibling care 2
PANOC +ve 20
PANOC -ve 4 May 2012 Leeds, Carers Trust 21
Project ‘A’ Project ‘B’
MACA 10.31 14.87
PANOC negative 4.64 8.69
PANOC positive 14.81 11.62
Young carers at Project A have a lower MACA score than those at Project B, indicating that
they were involved in lower levels of caring compared to young carers at Project B.
Young carers at Project B experienced much higher negative outcomes of caring than
young carers at Project A and their positive scores were also lower, suggesting that they
were experiencing less positive benefits of caring than young carers at Project A.
Low positive and high negative scores on the PANOC indicate that there is a potential for
concern regarding the outcomes of caring for young carers at Project B.
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Example of pre-intervention data at project level
Using the MACA to measure changes in the amount of caring
Evaluation A:
6 Projects
Evaluation B:
12 projects
Pre-
Intervention
Post-
Intervention
Pre-
Intervention
Post-
Intervention
MACA-YC18
Total 11.27 11.33 12.27 11.65
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Using the PANOC to measure changes in caring outcomes
PANOC
Evaluation A:
6 projects
Evaluation B:
12 projects
Pre-
Intervention
Post-
Intervention
Pre-
Intervention
Post-
Intervention
Positive 14.09 13.80 13.23 13.01
Negative 5.26 3.07 5.25 3.98
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Practice issues from MACA and PANOC
• There was not a significant reduction (as measured by the MACA) in the amount of
caring activities performed by young carers across both programme evaluations
• Individual projects are at their most effective in reducing the overall amount of caring when they are providing help to those young people with greater levels of caring in the first place (i.e. those whose pre-intervention MACA scores are high)
• Preventing an increase in caring, or reducing the amount of caring done by children, will require interventions that are targeted specifically on controlling or reducing caring tasks
• There was no significant increase in the positive outcomes for young carers. However,
positive outcomes were already high across the projects even at pre-intervention stage
• The negative outcomes of caring decreased for both programmes. These include a
reduction in young carers’ sense of loneliness, sadness, isolation etc.
• Reducing the negative outcomes of caring may be a more important aim than
increasing the positive outcomes, especially where young carers come to a project in
the first place with a high negative score on the PANOC
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