Measuring outcomes for young carers: MACA, …static.carers.org/files/plenary-2-saul-becker-6257.pdf · May 2012 Leeds, Carers Trust 1 Measuring outcomes for young carers: MACA, PANOC

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


From humble beginnings….

Outcomes for children

Negative Positive


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


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


… 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)


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.”


Manual for Measures of Caring

Activities and Outcomes for

Children and Young People

Carers Trust 2009 and 2012


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


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


PANOC-YC20


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


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



Officially, how many children care for a

sick/disabled parent or other family member?

50,000

125,000

175,000


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


BBC Survey – November 2010

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.


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


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


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



Impact of research – let us know!

Young carers

May 2012 27

Thank you for listening!

www.saulbecker.co.uk

Leeds, Carers Trust

Documents

Measuring outcomes for young carers: MACA, …static.carers.org/files/plenary-2-saul-becker-6257.pdf · May 2012 Leeds, Carers Trust 1 Measuring outcomes for young carers: MACA, PANOC