Experiences of young carers and young adult carers: lifecourse stage dimensions of care-giving and the implications
for policy and practice
Bettina Cass, Deb Brennan, Cathy Thomson, Trish Hill,
Christiane Purcal, Elizabeth Adamson and Myra Hamilton
Social Policy Research Centre, University of NSW
Carers NSW 2011 Biennial Conference 17-18 March 2011
Background to the study
 Findings based on a 3 year Australian Research Council (ARC) Linkage
Grant on Young Carers: Social policy impacts of the caring
responsibilities of children and young adults
 The researchers acknowledge the funding from the ARC and the support
from the Project Partners.
 Partner organisations:
In NSW: Carers NSW, NSW Health, Ageing, Disability and Home Care in Dept
of Human Services, & NSW Commission for Children and Young People
In South Australia: Carers SA, Social Inclusion Unit in the Department of
Premier and Cabinet, Dept of Families and Communities, Dept of Education
and Children’s Services, Dept of Further Education, Employment, Science
and Technology, &Children, Youth and Women’s Health Service
Introduction: highlighting the salience of age
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In this presentation we distinguish between young carers (up to age 17) and
young adult carers (18-25) who provide care for a family member with disability,
long term illness or who are frail older people
Growing recognition of young carers and young adult carers as a social category
in last two decades in Australia, UK and increasingly in the US, Canada, New
Zealand and Ireland
They comprise two categories of carers for whom age is a most obvious factor in
shaping their experiences of caring and the associated costs
Although care theory, including feminist theory, is increasingly gendered, it is far
less sensitive to age differences among the diverse participants in care-giving
Research on young carers highlights the important role of age in structuring
every facet of the caring process
In response, we develop a new theoretical framework of care-giving which
places age, the life-course stage of carers, at the centre of conceptual
understanding and analysis
Revisiting mainstream care theory
The mainstream care literature does not provide conceptual tools to
understand the importance of age:
Reasons for this absence:
– The literature tends to focus on other socio-economic cultural
factors gender, ethnicity, low resource households, household
composition, labour force status, rather than age
– Even when age is raised, there is no systematic analysis of how
caring at a particular stage of the lifecourse may affect the
pathways into and experiences of care and costs associated with
care provision
Developing the Young Carers theoretical framework
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The young carer literature offers insight into creating a framework
It draws attention to the way in which age shapes pathways into care
Draws attention both to the costs in the present, and future/opportunity costs of
caring at a young age
Describes the importance of opportunity costs that range well beyond foregone
income, including interruptions to primary, secondary and tertiary education,
participation in youth activities like sport, future employment opportunities, and
effects on social relationships, health and wellbeing and opportunities to live
independently and form a relationship of one’s own.
Emphasises the effects on childhood and youth, and the transitions into
adulthood, and how caring affects choices about the future
Describes both positive (ie becoming mature, responsible and picking up skills
at an early age) and negative effects (ie difficulty attending school, continuing
post-school education and entering employment ) associated with caring at a
young age.
Helps to frame what a lifecourse approach to care might look like
Policy objectives of an age-sensitive theory
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Based on Fisher and Tronto’s (1990) typology of care which distinguishes
between different modalities of care provision:
caring about - paying attention to the factors that determine well-being and
establishing the need for care;
caring for - taking the initiative for concrete caring activities and taking
responsibility to ensure that they are carried out;
taking care of - actually carrying out the daily tasks of care-giving work;
care receiving – signifying that caring is a reciprocal relationship
What types of policy and services framework would move the provision of care
from totally informal (taking care of) to social provision of care (caring
about) supported by formal care services, and how should such a
framework take account of age?
Researchers developed a categorisation of services based on program
objectives and type of intervention: Assistance; Mitigation; Prevention
Differentiation by age
Both young carers (YC) and young adult carers
(YAC)
described
some
positive
aspects
associated with their caring responsibilities.
However,
YCs
were
more
likely
to
have
considered the positive aspects, whereas the
older cohort (YACs) were more cognisant of
some of the more negative aspects of their
caring responsibilities and how they impacted on
their future decisions.
NB: For the Health question, YACs were
asked how “satisfied” they were and YCs
were asked how “happy” they were with their
health.
Impacts on young carers and young adult carers
Education
The qualitative data from interviews indicate that young adult carers (17 -25) were more
likely to find it difficult to balance their care and study responsibilities.
Many young adult carers in university and TAFE felt that it was difficult to balance
caring and study because there were more assignments, and they were often also
trying to work part-time.
Despite finding it difficult, YACs also said (provided there was a campus within a short
distance from the home) that the flexibility of university hours often fit in better with their
caring responsibilities than did school.
However, Census data show that gaps between carers and non-carers in participation
in study were higher for the 15-19 years group than the 20-24 years group.
These findings suggest that the largest gaps for young people caring and their
non-caring counterparts may be during the transition phase from school (age 15
– 19 years).
Gaps in participation in study
between carers and non-carers by age and gender
15-19 years
10
8
8
6
Gap
20-24 years
10
6
Gap
4
4
2
2
0
0
NSW
Vic
Qld
SA
WA
Tas
-2
NT
ACT
NSW
Vic
Qld
SA
WA
-2
Males
Females
Males
Females
Tas
NT
ACT
Labour force participation
Carers in both age groups were employed at lower rates than their non-caring
counterparts, however there were variations by age and gender:

Among females aged 20-24 years carers had lower rates of employment than
non-carers; and also lower employment rates than their male counterparts
(ABS Census of Population and Housing 2006).

In many States, among the 15-19 year old cohort, males had lower
employment rates than their female young carer counterparts (ABS Census of
Population and Housing 2006).

Gaps between carers and non-carers in employment rates were generally
higher for the 20-24 years age group than the 15-19 years age group.
“I work split-shifts so it’s a lot easier and […] if I need to take a day off or whatever I
can work around them with you know taking mum to appointments and stuff “
(young adult carer, female)
Gaps in employment rates
between carers and non-carers by age and gender
15-19 years
25
20
Gap
20-24 years
25
20
15
Gap
15
10
10
5
5
0
0
NSW
Vic
Qld
Male
SA
WA
Tas
Female
NT
ACT
NSW
Vic
Qld
Male
SA
WA
Tas
Female
NT
ACT
Social relationships
Young carers (compared with young adult carers) were more likely to say that caring did not
have an impact on their social life. Both young carers and young adult carers talked
about the importance of the relationships formed with other young carers.
Living independently
Young carers and young adult carers indicated that moving away from their family home
was made difficult by their caring responsibilities. This was a common response for
both groups of carers, and for parent and sibling care recipients.
“It’s hard because I never imagined that I would still be living at home at 23 […] but your
choices… your choices are limited [...] I can’t leave the house” (young adult carer,
female)
Health
There were distinct differences between young carers and young adult carers regarding the
impact on their health. The health consequences on young adult carers were profound
and they were much more likely to assert that their caring responsibilities had a
negative, and deteriorating, impact on their health.
Impacts of caregiving: Lifecourse differences
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Differences in the lifecourse stage between young carers and young adult carers
– In the case of past experiences, the pathways of young carers and young
adult carers seem similar.
– However, the immediate effects of care provision on their education,
employment and health are articulated as more pronounced for young adult
carers, who perceive more clearly the constraints upon them.
– Corroborated by analysis of the Longitudinal Surveys of Australian Youth
about young people aged 15-24 years who are not in education
employment or training (NEET) and who are categorised as disconnected
from economic activity “(Hillman, 2005), but caregiving responsibilities tend
to remain invisible.
– The dimension in which the difference between young carers and young
adult carers is strongest is in their future aspirations; young adult carers
stated emphatically that their caring role is likely to affect their choices
about their path in life and their ability to live independently. Young carers
were much less likely to do so, possessing a much greater sense of future
possibility and opportunities.
Analytical framework for young carer services

The analytical framework of service goals and type of intervention aims to better
understand the current emphasis in service provision and identify gaps.

The analytical framework was developed with reference to a number of existing
conceptual frameworks which focus on:
 young carers’ engagement in different modes of care;
 the exercise of agency within a number of constraints; and
 the balance between formal and informal care provision and how this
influences agency and modes of care
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The framework distinguishes between three categories of service goals and type
of intervention:
 Assistance
 Mitigation
 Prevention
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In practice, services provide a range of supports and the categories are not
mutually exclusive
Service categorisation
Analytical
framework
Assistance
Characteristics
Types of services
YC
YAC
Support young people in their caring
role
Information
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Counselling
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Referrals
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Peer support
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Respite services
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Education assistance
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Short-term
Mitigation
Reduce intensity or time spent
caring
Longer-term
Intensive
Prevention
Prevent the entrenchment of a young
person’s caring role and associated
negative outcomes
Optimum combinations of formal
and informal support
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Training and employment assistance
Financial support
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Early intervention
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Personalised case management
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Whole-of-family
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Service integration
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Support for young carer AND the person
cared for
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Young carers and young adult carers access a range of services , or would
benefit from access and usage
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All service categories (assistance, mitigation, prevention) apply for both age
groups
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All service types, with the exception of post-school training and employment
assistance, are relevant for both age groups
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Access to training and employment assistance are crucial for young adult carers
due to their life course stage and transitions
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Financial support for young adult carers should consider young people’s life stage
and their aspirations to live independently. Periods of informal caregiving need to
be taken into account in assessment for independent status for income support, in
the same way as periods of paid employment
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A preventive focus in service provision is critical for both age groups, which
requires a focus on the whole family and the service needs of the family
member/s with disability, or chronic illness
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Service provision should take account of individual needs, age and life stage and
be personalised accordingly
Conclusions and policy implications
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Age-sensitive theory for young carers and young adult carers draws attention to
the “appropriateness” of young people providing care: what is meant by
appropriateness?
Is this an issue of age?
Is this an issue of the types of care provided?
Is this an issue of the intensity and duration of care provided and the impacts on
other aspects of everyday life: education, employment, friendships?
Moving toward optimal combinations of formal and informal care at the most
appropriate times: provision of assistance, mitigation or preventive services for
the person with disability or chronic illness and for potential young carers and
young adult carers at onset of disability/illness and caregiving responsibilities.
Major issues for health care, disability care and community services provision: to
prevent inappropriate care responsibilities from arising; to mitigate care
responsibilities substantially; or to assist young carers and adult carers in their
responsibilities which is a much weaker policy goal.