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Who is a Young Carer?

--submitted by Reisha Lydia Fernandes, BSc, MPH Candidate, Department of Population Medicine, University of Guelph

Have you heard of the term “young carer”? Chances are, you probably haven’t. Most people are not familiar with the term in Canada. But it isn’t just Canada; young carers are an invisible population worldwide and due to the lack of public awareness, their needs tend to go unrecognized.

So, let us start with the basics: What is a young carer?

A young carer is anyone 24 and under who provides unpaid care to a family member (Bendar, et al., 2013). These family member(s) may be suffering from illness, mental health issues, old age, disability, or substance abuse (Smyth, Blaxland, and Cass, 2011). Young carers tend to have more responsibilities than their non-caregiving peers.

Young Carers Are Infographic

 

But what exactly are their responsibilities?

The range of duties of a young carer fit into seven categories and they may engage in work from one or more of these categories. These include domestic tasks, household management, personal care, emotional care, sibling care, financial care, and practical care (Charles, Marshall, and Stainton, 2012).

Domestic tasks consist of responsibilities such as washing dishes or cleaning the house. Household management involves duties such as shopping or repairing the house. Personal care includes tasks such as helping a family member dress, bathe, and use the bathroom. Emotional support includes improving a family member’s mental health. Sibling care includes caring for brothers and sisters who may or may not have exceptional needs. Financial care can range from handling payments for a family member or partner to working to pay the bills themselves. Practical support involves helping the family with language barriers or speech/hearing impairment.

But, how do young carers end up in these kinds of roles in the first place?

Charles, Marshall, and Stainton (2010b) interviewed Canadian adults to determine why they took up a caregiving role in their youth. One reason was a strong sense of duty towards their family. Yet, the main reason stated was that no one else was able to provide care when exceptional circumstances occurred in their family (Charles et al., 2010b).

These ‘exceptional circumstances’ include situations such as a chronic or terminal illness/condition, disability, parental absence due to divorce or economic reasons, mental illness, and addiction issues (Charles et al., 2012; Bendar, et al., 2013). When these circumstances occur, families tend to focus on supporting each other to preserve their ongoing family function (Charles et al., 2012).

But preserving the family’s function may have a few side effects, both positive and negative.

Being a young carer can impact various aspects of a youth’s life. The consequences depend on a young carer’s situation and length of their caregiving roles but duties can impact their schooling, employment opportunities, health, and well-being (Stamatopoulos, 2016).

Let’s begin with some of the negative effects of young caregiving.

Aldridge (2006) discovered that young carers experience negative outcomes particularly when caring becomes long term. Furthermore, outcomes can be worse if practical or emotional responsibility is not compatible with the youth’s age, maturity, and understanding (Aldridge, 2006). Charles et al. (2010a) found that previous young carers expressed feelings of guilt, anger, feeling robbed of their childhood, and feeling isolated from their families and peers. Others said they felt as if they were in a distorted relationship where they have to rescue people (Charles, et al., 2010a).

A study conducted by Thomas et al. (2003) revealed that young carers often tended to struggle in school and had a hard time keeping up with homework because their caregiving tasks took priority. This might lead to having poor attendance, tiredness, lateness, and low concentration rates in school (Bendar, et al., 2013). Yet, Thomas et al. (2003) found that young carers were highly aware of the importance of school and employment opportunities.  

Several studies on young carers revealed that they felt isolated from their peers due to the time commitment of their caregiving roles, and that their higher level of maturity set them apart from their peers (Charles, et al., 2010a; Cree, 2003; Thomas, et al., 2003). Young caregiving can have an impact on a young carer’s well-being as it might cause feelings of worry, stress, and anxiety (Charles, et al., 2010b). A study on the worries and problems of young carers by Cree (2003) showed that young carers reported experiencing bullying or harassment due to the health condition of their family member and their caregiving status. This can then lead to depression, self-harm, drug or alcohol use, and feelings of helplessness (Cree, 2003).

Young caregiving can be quite a financial burden on a child, youth or young adult. Unlike adult caregivers, young carers have no access to any federal aids such as tax credits and compassionate care benefits (Stamatopoulos, 2015).

Despite all of this, not all effects of young caregiving are negative – there can also be many positive impacts on their well-being.

Charles et al. (2010a) revealed young carers feel a strong sense of pride, maturity, and independence due to their caregiving roles. Some young carers expressed feeling stronger and having a positive perspective where they could appreciate important things in life (Charles, et al., 2010a). Bendar et al. (2013) also revealed that some young carers felt their roles helped develop their practical skills and gave them an understanding of illness and disability. In other studies, young carers reported their role has made them more mature, responsible, brave and has helped them develop closer family relationship (Rose and Cohen, 2010). Thomas et al. (2003) found that, because of their experiences, some young carers expressed desire to peruse occupations that support those with illness.

So how can we help young carers? How can we ease their burden? Is there any help for them in Canada? Fortunately, the answer is yes.

There are several organizations that support young carers in Canada. These include the Young Carers Initiative: Powerhouse Project, Hospice Toronto YCP, Cowichan Young Carers Program, and the Young Carers Project located in Kitchener (Stamatopoulos, 2016). These organizations offer various services and resources such as peer support groups, fun de-stressing activities, or advocacy. Importantly, these services are free of charge to young carers and help young carers build relationships with others with similar experiences. In doing so, these organizations help young carers form social bonds and reduce their feelings of isolation and loneliness.

At this point, you may be asking why there isn’t more of an effort to help young carers? Well...it is difficult. This is due to the hidden nature of young carers. Face-to-face interviews with young carers by Moore and McAuthor (2007) revealed that these individuals tried to keep their caregiving roles a secret. This is because they feared unwanted interventions from social services or judgment and criticism of the family. They also expressed a fear of being bullied due to the stigma around illness or disability of family members (Moore and McAuthor, 2007). Even adults tried to hide that they relied on their children to support them, which perpetuates the invisible nature of young carers (Charles et al., 2012).

Additionally, there is a lack of permanent stable and sufficient funding available to young carer organizations (Stamatopoulos, 2016). This translates into issues with staffing, locations and the range, and the scope of services offered by these organizations (Stamatopoulos, 2016). All of this affects the level of help offered to young carers.

Yet, young caregiving is not uncommon in Canada. A survey conducted by Charles, Marshall, and Stainton (2010) showed that 12% of high school students surveyed in Vancouver identified as a young carer. While, another study on the 2001 and 2006 Canadian Census data by Stamatopoulos (2015) revealed that 1.18 million youth between the ages of 15-24 are young carers.

So, what’s the bottom line? What do we need to do?

Our first priority should be to improve public awareness and recognition of young carers in Canada. Awareness should be raised in a way that does not stigmatize young carers. As Bendar et al. (2013) pointed out, it is important that the public should not assume all young carers are in inappropriate situations. This might decrease the chances of young carers self-identifying with the term and seek support from young carer organizations. The public should view them as normal families that find themselves in abnormal circumstances (Bendar, et al., 2013). But the public should also be aware that there are certain types of caring that are inappropriate for youth (Bendar, et al., 2013).

The public should also keep in mind that young carers experience both positive and negative outcomes. Interviews with young carers by Charles et al. (2010) showed that the lack of support contributes to negative outcomes. Thus, as a community, we should be able to identify young carers and encourage them to use supports offered by young carer organizations.

The Difficulties of and Supports for Young Carers

Should you still want to learn more about young carers, please watch this 11-minute documentary on young carers created by the young carers project in Kitchener, Ontario: https://youngcarersproject.wordpress.com/resources/documentary-film/.

References

Aldridge, J. (2006). The experiences of children living with and caring for parents with mental illness. Child abuse review, 15(2), 79-88.

Action Canada Task Force Report. (2013). Who Cares About Young Carers? Raising Awareness for an Invisible Population. Bendar, V., Chadi, N., DeCourcey, M., Kuperman, A., Pillar, A.,& Scott, B.

Breen, A. It’s Time to Care for Our (Young) Carers. Retreieved April 2017 from: http://vanierinstitute.ca/time-care-young-carers/

Charles, G., Stainton, T., & Marshall, S. (2012). Young Carers in Canada: The Hidden Cost and Benefits of Young Caregiving. The Vanier Institute of the Family.

Charles, G., Marshall, S., & Stainton, T. (2010)a. An overview of the demographics profiles and initial results from the British Columbia Young Carers Project. Relational Child and Youth Care Practice, 23(4), 65-68.

Charles, G., Stainton, T., & Marshall, S. (2010)b. Young carers in immigrant families: An ignored population. Canadian Social Work, 12(1), 83-92.

Cree, V. E. (2003). Worries and problems of young carers: issues for mental health. Child & Family Social Work, 8(4), 301-309.

Moore, T., & McArthur, M. (2007). We’re all in it together: Supporting young carers and their families in Australia. Health & social care in the community, 15(6), 561-568.

Rose, H. D., & Cohen, K. (2010). The experiences of young carers: A meta-synthesis of qualitative findings. Journal of youth studies, 13(4), 473-487.

Smyth, C., Blaxland, M., & Cass, B. (2011). ‘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. Journal of Youth Studies, 14(2), 145-160.

Stamatopoulos, V. (2016). Supporting young carers: a qualitative review of young carer services in Canada. International Journal of Adolescence and Youth, 21(2), 178-194.

Stamatopoulos, V. (2015). One million and counting: The hidden army of young carers in Canada. Journal of Youth Studies, 18(6), 809-822.