Research

Australian studies

Young Carer research conducted across Australia

We’re all in together: Supporting young carers and their families in Australia (2007)

Tim Moore & Morag McArthur

Main finding: Young carers have high levels of need, but receive low levels of support.

A qualitative, exploratory study which identifies the needs and barriers to services for young carers and their families in Canberra, Australia. Conducted with 50 young participants with caring responsibilities, the findings demonstrate young carers present high levels of need but receive low levels of support (both formal and informal) by their extended family and the service sector. Major barriers include reluctance within families to seek assistance for fear of child removal, negative intervention and increased scrutiny, a lack of information about available services, a lack of flexibility and responsiveness to holistic needs of families, and a lack of service collaboration. A solution put forward by this paper was the need to recognise the specific needs of each family member and tailor services appropriately.

 

Attendance, Achievement and Participation: Young Carers’ Experiences of School in Australia (2009)

Tim Moore, Morag McArthur, & Ros Morrow

Main finding: Young carers responsibilities significantly reduced their capacity to fully engage with learning.

A qualitative research project with the aim of understanding what barriers exist to hinder young carers involvement in their learning. 51 young carers (under 18) were recruited and interview via telephone and in person. The findings show that young carers typically value their education quite highly, but identify key barriers to their successful engagement. Key barriers include: challenges in getting to school, poverty, lack of time, difficulty connecting with peers, and bullying.

 

Different but the same? Exploring the experiences of young people caring for a parent with an alcohol or other drug issue (2011)

Tim Moore, Morag McArthur & Debbie Noble-Carr

Main finding: Youth caring for people affected by alcohol or other drugs are often ignored, despite having many of the same needs as “typical” young carers.

15 participants were recruited for this study from families of people affected by alcohol as well as a range of illicit substances including marijuana, heroin, and ice. The levels of care provided by the young people in this study varied greatly, however the study found that the levels of care were similar to that of children in “typical” young carer roles. Types of caring provided include emotional support, financial support, household tasks, safety and monitoring, personal care, and caring for siblings.

 

So that’s how I found out I was a young carer and that I actually had been a carer most of my life’. Identifying and supporting hidden young carers (2011)

Ciara Smyth, Megan Blaxland, & Bettina Cass.

Main finding: Many young carers remain ‘hidden’ and beyond the reach of services.

A qualitative study was conducted and comprised 11 focus groups at three different young carer camps in Sydney, Adelaide, and Canberra. The total number of participant was 68, and they were aged between 11 and 25. The findings suggest that identifying as a young carer begins with discussion with other young people and that caring responsibilities are often seen as ‘normal’ despite being much more burdensome.

 

Bounded agency in young carers’ lifecourse-stage domains and transitions (2012)

Myra Giselle Hamilton & Elizabeth Adamson

Main finding: The lifecourse of a young carer plays an important role in defining their caring situation

36 participants were involved in semi-structured interviews. Participants were split into two brackets; 7 to 17 and 18 to 25. The study found that age, lifecourse stage, and gender, play a significant part in determining one’s caring situation. Lifecourse stages include transitioning from primary school to high school, high school to tertiary education, leaving the family home, or beginning/developing their career.

 

Confirmatory Factor Analysis and Invariance Testing of the Young Carer of Parents Inventory (YCOPI). (2014)

Stephen Cox & Kenneth Pakenham

Main finding: The Young Carer of Parents Inventory is a reliable measurement tool, however this study provides evidences for a revised version which is more robust.

The Young Carer of Parents Inventory is a two-part scale. The first part measures caregiving experiences that are applicable to all caregiving contexts, and the second part measures dimensions related to youth caregiving n the context of parental illness.

 

Resilience in children of parents with mental illness: Relations between mental health literacy, social connectedness and coping, and both adjustment and caregiving (2009)

Eliza Fraser & Kenneth Pakenham

Main finding: There is stronger support for social connectedness and positive adjustment than there is for mental health literacy and positive adjustment.

44 participants completed questionnaires. The study explored the relationship between resilience factors (mental health literacy, social connectedness, and coping strategies) and adjustment (depressive symptomology, life satisfaction, prosocial behaviour, emotional/behavioural difficulties), as well as caring outcomes in children (12-17 years) of a parent with a mental illness. There is weak support for mental health literacy as a protective factor, and strong support for prosocial relationships, as well as strong support for disengagement as a negative factor.

 

Young carers: Location, education and employment disadvantage (2011)

Trish Hill, Cathy Thomson, & Bettina Cass.

Main finding: Local area characteristics may play a large role in young carer’s life chances

This analysis used Census data from 2006, and classifies young carers as between 15 and 24 who responded positively to the question about the provision of unpaid care, help or assistance on the Census form. The study found that young carers tend to be located in rural areas, lower SES areas, areas of higher unemployment, and higher rates of lone-parent households. Evidence suggests that young carers in these areas are potentially at a greater risk than their more prosperous peers.

 

The nature of youth care tasks in families experiencing chronic illness/disability: Development of the Youth Activities of Caregiving Scale (YACS). (2010)

Michael James Ireland & Kenneth Pakenham

Main finding: The successful development of a scale that measures care tasks performed by young people in the context of family illness/disability

The development process for this scale yielded four distinct factors: instrumental care, social/emotional care, personal/intimate care, and domestic/household care. The internal reliabilities ranged from .74 to .92. The YACS was also shown to predict youth adjustment in domains of health and prosocial behaviour.

 

Youth adjustment to parental illness or disability: The role of illness characteristics, caregiving, and attachment. (2010)

Michael Ireland & Kenneth Pakenham

Main finding: Gradual illness/disability onset, being male, isolation, lower perceived maturity, and less choice in caregiving have been shown to predict poor adjustment in young carers.

This study compares 81 youths (10-25 years) of a parent with a physical or mental disability. The aim was to explore the relationship between youth adjustment and three predictors: parental illness/disability characteristics, caregiving, and parent-child attachment. Additionally, the study explored the differences between those with a parent with a physical disability, and those with a mental disability. It was found that there was a difference between adjustment of children with a parent of either a physical or mental disability, and a wide range of predictive factors for poor adjustment in both categories were discovered.

 

The effects of parental illness and other ill family members on the adjustment of children. (2014)

Stephen Cox & Kenneth Pakenham

Main finding: The presence of any family member with an illness is associated with a greater risk of mental health difficulties for youth relative to peers from ‘healthy’ families. The risk is elevated if the family member is the parent, and has mental illness or substance misuse.

This study examined four research questions: (1) the differential impact of family health status on youth adjustment, (2) differential impact of illness category on youth adjustment, (3) & (4) impacts of demographics and caregiving on youth adjustment.

 

Test of a model of the effects of parental illness on youth and family functioning. (2012)

Stephen Cox & Kenneth Pakenham

Main finding: Parental illness/disability appear to affect familial children in a different way to parental depression.

This study tested the Family Ecology Framework (FEF) as a framework for examining the relationship between parental illness and youth and family functioning. The findings suggest that parental disability fits this model, and aligns with the mediational pathway that it suggests (i.e. that parental illness/disability leads to role-redistribution, stress, and stigma, which in turn lead to lower rates of youth adjustment), however the same model does not appear to work for parental depression.