Trajectory of Young Caregivers
To cite this document: Observatoire québécois de la proche aidance. (2024). Trajectory of Young Caregivers. CIUSSS du Centre-Ouest-de-l’Île-de-Montréal.
© Observatoire québécois de la proche aidance, CIUSSS du Centre-Ouest-de-l’Île-de-Montréal, 2024
References
- Statistique Canada. (2020). Journée nationale des proches aidants : la prestation de soins par les jeunes au Canada. https://www23.statcan.gc.ca/imdb/p2SV_f.pl?Function=getSurvey&SDDS=4502
- Carers Australia. (2019). Young carers. http://www.carersaustralia.com. au/about- carers/young- carers2/
- Leu, A. et Becker, S. (2017). A cross-national and comparative classification of in-country awareness and policy responses to ‘young carers.’ Journal of Youth Studies, 20 (6), 750–762. https://doi.org/10.1080/13676261.2016.1260698
- Thomson, M. D., Wilson-Genderson, M. et Siminoff, L. A. (2022). The presence of a secondary caregiver differentiates primary cancer caregiver well-being. Supportive Care in Cancer, 30 (2), 1597–1605. https://doi.org/10.1007/s00520-021-06544-8
- Marino, V. R., Badana, A. N. et Haley, W. E. (2020). Care demands and well-being of primary and secondary non-spousal caregivers of aging adults. Clinical Gerontologist , 43 (5), 558-571. https://doi.org/10.1080/07317115.2020.1759748
- King, T.L., Shields, M., O’Flaherty, M., Kavanagh, A. et Spittal, M. J.(2023). Use of parental disability trajectories to identify adolescents who are young carers. Journal of Youth and Adolescence, 52 , 449–460. https://doi.org/10.1007/s10964-022-01627-z
- Wepf, H., Joseph, S. et Leu, A. (2021). Pathways to mental well-being in young carers: The role of benefit finding, coping, helplessness, and caring tasks. Journal of Youth and Adolescence , 50 (9), 1911–1924. https://doi.org/10.1007/s10964-021-01478-0
- Leu, A., Frech, M. et Jung, C. (2018). Young carers and young adult carers in Switzerland: Caring roles, ways into care and the meaning of communication. Health & Social Care in the Community , 26 (6), 925-934. https://doi.org/10.1111/hsc.12622
- Stamatopoulos, V. (2018). The young carer penalty: Exploring the costs of caregiving among a sample of Canadian youth. Child & Youth Services , 39 (2-3), 180-205. https://doi.org/10.1080/0145935X.2018.1491303
- Di Gessa, G., Xue, B., Lacey, R. et McMunn, A. (2022). Young adult carers in the UK—New evidence from the UK household longitudinal study. International Journal of Environmental Research and Public Health, 19 (21). https://doi.org/10.3390/ijerph192114076
- McDougall, E., O’Connor, M. et Howell, J. (2018). “Something that happens at home and stays at home”: An exploration of the lived experience of young carers in Western Australia. H ealth & Social Care in the Community, 26 (4), 572-580. https://doi.org/10.1111/hsc.12547
- McGibbon, M., Spratt, T. et Davidson, G. (2019). Young carers in Northern Ireland: Perceptions of and responses to illness and disability within the family. The British Journal of Social Work, 49 (5), 1162-1179. https://doi.org/10.1093/bjsw/bcy102
- Hamilton, M. G. et Adamson, E. (2013). Bounded agency in young carers’ lifecourse-stage domains and transitions. Journal of Youth Studies, 16 (1), 101-117. https://doi.org/10.1080/13676261.2012.710743
- Barry, M. (2011). ‘I realised that I wasn’t alone’: The views and experiences of young carers from a social capital perspective. Journal of Youth Studies, 14 (5), 523-539. https://doi.org/10.1080/13676261.2010.551112
- Ireland, M. J. et Pakenham, K. I. (2010). Youth adjustment to parental illness or disability: The role of illness characteristics, caregiving, and attachment. Psychology, Health & Medicine, 15 (6), 632–645. https://doi.org/10.1080/13548506.2010.498891
- Pakenham, K. I. et Cox, S. D. (2018). Effects of benefit finding, social support and caregiving on youth adjustment in a parental illness context. J ournal of Child and Family Studies, 27 , 2491–2506. https://doi.org/10.1007/s10826-018-1088-2
- Roling, M., Falkson, S., Hellmers, C. et Metzing, S. (2019). Early caregiving experiences and the impact on transition into adulthood and further life: A literature review. Scandinavian Journal of Caring Sciences, 34 (3), 539–551. https://doi.org/10.1111/scs.12757
- Cassidy, T. et Giles, M. (2012). Further exploration of the Young Carers Perceived Stress Scale: Identifying a benefit-finding dimension. British Journal of Health Psycholog y , 18 , 642-655. https://doi.org/10.1111/bjhp.12017
- Heyman, A. et Heyman, B. (2013). ‘The sooner you can change their life course the better’: The time-framing of risks in relationship to being a young carer. Health, Risk & Society , 15 (6-7), 561-579. https://doi.org/10.1080/13698575.2013.830080
- Aldridge, A. (2018). ‘Where are we now? Twenty-five years of research, policy and practice on young carers’. Critical Social Policy, 38 (1), 155–65. https://doi.org/10.1177/0261018317724525
- McGaw, V. E. et Reupert, A. E. (2022). “Do not talk about that stuff”: Experiences of Australian youth living with a veteran parent with PTSD. Traumatology, 28 (1), 24–30. https://doi.org/10.1037/trm0000317
- Hagström, A. S. et Forinder, U. (2022). ‘If I whistled in her ear she’d wake up’: Children’s narration about their experiences of growing up in alcoholic families. Journal of Family Studies, 28 (1), 216-238. https://doi.org/10.1080/13229400.2019.1699849
- Moore, T., McArthur, M. et Noble-Carr, D. (2011). Different but the same? Exploring the experiences of young people caring for a parent with an alcohol or other drug issue. Journal of Youth Studies, 14 (2), 161–177. https://doi.org/10.1080/13676261.2010.522561
- Gruenert, S., Ratnam, S. et Tsantefski, M. (2004). T he Nobody’s Clients Project: Identifying and addressing the needs of children with substance dependent parents . Odyssey Institute of Studies, Odyssey House Victoria.
- Gray, B., Robinson, C., Seddon, D. et Roberts, A. (2010). Patterns of exclusion of carers for people with mental health problems—The perspectives of professionals. Journal of Social Work Practice, 24 (4), 475-492. https://doi.org/10.1080/02650530903528821
- Smyth, C., Blaxland, M. et 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. https://doi.org/10.1080/13676261.2010.506524
- Bjorgvinsdottir, K. et Halldorsdottir, S. (2014). Silent, invisible and unacknowledged: Experiences of young caregivers of single parents diagnosed with multiple sclerosis. Scandinavian Journal of Caring Sciences, 28 (1), 38-48. https://doi.org/10.1111/scs.12030
- Villatte, A, Piché, G. et Benjamin S. (2022). Perceived support and sense of social belonging in young adults who have a parent with a mental illness. Frontiers in Psychiatry, 12 . https://doi.org/10.3389/fpsyt.2021.793344
- Frederick, T. J., Vitopoulos, N., Stamatopoulos, V. et Kidd, S. A. (2021). Brief report: Youth homelessness, youthful caregiving, and resilience. Children & Youth Services Review, 129 , https://doi.org/10.1016/j.childyouth.2021.106177
- Blake-Holmes, K. (2019). Young adult carers: Making choices and managing relationships with a parent with a mental illness. Advances in Mental Health, 18 (3), 230-240. https://doi.org/10.1080/18387357.2019.1636691
- Bancroft, A., Wilson, S., Cunningham-Burley, S., Backett-Milburn, K. et Masters, H. (2004). Parental drug and alcohol misuse: Resilience and transition among young people . Joseph Rowntree Foundation. https://www.drugsandalcohol.ie/3883/1/parental.pdf
- Stamatopoulos, V. (2015). ‘One million and counting: The hidden army of young carers in Canada’. Journal of Youth Studies, 18 (6), 809–822. https://doi.org/10.1080/13676261.2014.992329
- Becker, S. (2007). Global perspectives on children’s unpaid caregiving in the family: Research and policy on ‘Young Carers’ in the UK, Australia, the USA and Sub‐Saharan Africa. Global Social Policy, 7 (1), 23–50. https://doi.org/10.1177/1468018107073892 .
- Vizard, P., Obolenskaya, P. et Burchardt, T. (2019). Child poverty amongst young carers in the UK: Prevalence and trends in the wake of the financial crisis, economic downturn and onset of austerity. Child Indicators Research, 12 , 1831–1854. https://doi.org/10.1007/s12187-018-9608-6
- Cass, B., Brennan, D., Thomson, C., Hill, T., Purcal, C., Hamilton, M. et Adamson, E. (2011). Young carers: Social policy impacts of the caring responsibilities of children and young adults . Social Policy Research Centre. https://www.adhc.nsw.gov.au/__data/assets/file/0005/255686/Young_Carers_Report_Final_October_2011_w_cover_page.pdf
- Rose, H. D. et Cohen, K. (2010). The experiences of young carers: a meta-synthesis of qualitative findings. Journal of Youth Studies, 13 (4), 473–487. https://doi.org/10.1080/13676261003801739
- Nap, H. H., Hoefman, R., de Jong, N., Lovink, L., Glimmerveen, L., Lewis, F., Santini, S., D’Amen, B., Socci, M., Boccaletti, L., Casu, G., Manattini, A., Brolin, R., Sirk, K., Hlebec, V., Rakar, T., Hudobivnik, T., Leu, A., Berger, F., Magnusson, L.,… Hanson, E. (2020). The awareness, visibility and support for young carers across Europe: A Delphi study. BMC Health Services Research, 20( 1), 921. https://doi.org/10.1186/s12913-020-05780-8
- von Doussa, H., Hegarty, M., Sanders, B., Cuff, R., Tivendale, K., McLean, S. A. et Goodyear, M. (2022). Peer support for children of parents with mental illness (COPMI) in Australia: Responses from children, parents and facilitators of the CHAMPS peer support program. Advances in Mental Health, 21 (1), 55-66. https://doi.org/10.1080/18387357.2022.2075411
- Reupert, A., Gladstone, B., Helena Hine, R., Yates, S., McGaw, V., Charles, G., Drost, L. et Foster, K. (2021). Stigma in relation to families living with parental mental illness: An integrative review. International Journal of Mental Health Nursing, 30 (1), 6–26. https://doi.org/10.1111/inm.12820
- Joseph, S., Sempik, J., Leu, A. et Becker, S. (2019). Young carers research, practice and policy: An overview and critical perspective on possible future directions. Adolescent Research Review, 5, 77–89. https://doi.org/10.1007/s40894-019-00119-9
- Moore, T. et 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. https://doi.org/10.1111/j.1365-2524.2007.00719.x
- April, L., Cotton, A. et Vézina, J.-F., (2017). Vers une meilleure intégration des services pour les jeunes en difficulté et leur famille : orientations ministérielles relatives au programme-services destiné aux jeunes en difficulté 2017-2022. Ministère de la Santé et des Services sociaux. https://publications.msss.gouv.qc.ca/msss/fichiers/2017/17-839-04W.pdf
- Ali, L., Ahlström, B. H., Krevers, B., Sjöström, N. et Skärsäter, I. (2013). Support for young informal carers of persons with mental illness: A mixed-method study. Issues in Mental Health Nursing, 34 (8), 611–618. https://doi.org/10.3109/01612840.2013.791736
- Becker, S. et Sempik J. (2018). Young adult carers: The impact of caring on health and education. Children & Society, 33 (4), 377–86. https://doi.org/10.1111/chso.12310
- Landi, G., Pakenham, K.I., Cattivelli, R., Grandi, S. et Tossani, E. (2022). Caregiving responsibilities and mental health outcomes in young adult carers during the COVID-19 pandemic: A longitudinal study. International Journal of Environmental Research & Public Health, 19 (22). https://doi.org/10.3390/ijerph192215149
- Nakanishi, M., Richards, M., Stanyon, D., Yamasaki, S., Endo, K., Sakai, M., Yoshii, H. et Nishida, A. (2022). Adolescent carers’ psychological symptoms and mental well-being during the COVID-19 pandemic: Longitudinal study using data from the UK millennium cohort study. The Journal of Adolescent Health , 70 (6), 877–884. https://doi.org/10.1016/j.jadohealth.2022.01.228
- Berardini, Y., Chalmers, H. et Ramey, H. (2021). Unfolding what self-compassion means in young carers’ lives. Child and Adolescent Social Work Journal, 38 (5), 533-545. https://doi.org/10.1007/s10560-021-00791-8
- Kavanaugh, M. S., Johnson, K. T. et Zawadzki, M. J. (2021). Variations and patterns in sleep: A feasibility study of young carers in families with ALS. Journal of Clinical Medicine, 10 (19). https://doi.org/10.3390/jcm10194482
- Lewit-Mendes, M. F., Lowe, G. C., Lewis, S., Corben, L. A. et Delatycki, M. B. (2018). Young people living at risk of Huntington’s disease: The lived experience. Journal of Huntington’s Disease, 7 (4), 391-402. https://doi.org/10.3233/JHD-180308
- Shifren, K. et Chong, A. (2012). Health-related behaviors: A study among former young caregivers. Journal of Adult Development, 19 , 111-121. https://doi.org/10.1007/s10804-011-9140-0
- Dearden, C. et Becker, S. (2005). Growing up caring: Young carers and vulnerability to social exclusion. Dans M. Barry (dir.), Youth policy and social inclusion: Critical debates with young people (p. 251-266). Routledge.
- Davies, C. (1995). Competence versus care? Gender and caring work revisited. Acta Sociologica, 38 (1), 17–31. http://www.jstor.org/stable/4200937
- Kavanaugh, M. S., Stamatopoulos, V., Cohen, D. et Zhang, L. (2016). Unacknowledged caregivers: A scoping review of research on caregiving youth in the United States. Adolescent Research Review, 1 , 29-49. https://doi.org/10.1007/s40894-015-0015-7
- Brotman, S., Silverman, M., Boska, H. et Molgat, M. (2021). Intergenerational care in the context of migration: A feminist intersectional life-course exploration of racialized young adult women’s narratives of care. Affilia, 36 (4), 552-570. https://doi.org/10.1177/0886109920954408
- Tsai, K. M. (2014). Adolescents’ maintenance of family connectedness in their everyday lives [thèse de doctorat, UCLA]. eScholarship. https://escholarship.org/uc/item/7pv428ww
- O’Dell, L., Crafter,S., de Abreu, G. et Cline T. (2010). Constructing ‘normal childhoods’: Young people talk about young carers, Disability & Society, 25 (6), 643-655. https://doi.org/10.1080/09687599.2010.505734
- Martin-Storey, A., Gendron-Fontaine, S., Daigneault, M-M., Zaine, Y-L N., Cotton, J. C. et Ummel, D., (2023). La proche aidance dans les populations 2SLGBTQ+ : état des lieux. Fondation Émergence https://commander.fondationemergence.org/en/products/copie-de-affiche-famille-choisie?srsltid=AfmBOooAvlUkkRvHb95tpVn4-3nEIzUZMSMWEucrASHBf9fTBS1Rukm9
- Sempik, J. et Becker, S. (2013). Y oung adult carers at school: Experiences and perceptions of caring and education . Carers Trust. http://www.youngadultcarers.eu/docs/young-adult-carers-at-school-full-report.pdf
- Observatoire québécois de la proche aidance. (2024). Projet trajectoire : entrevues avec des personnes proches aidantes.
- Masterson-Algar, P., Egan, K., Flynn, G., Hughes, G., Spector, A., Stott, J. et Windle, G. (2023). iSupport for young carers: An adaptation of an e-health intervention for young dementia carers. International Journal of Environmental Research & Public Health, 20 (1), 127. https://doi.org/10.3390/ijerph20010127
- Smart, D. (2022). “Not so textbook: Understanding the school experiences of young carers”. Dans W. McGovern, A. Gillespie et H. Woodley (dir.), Understanding safeguarding for children and their educational experiences (p. 97-106), Emerald Publishing Limited. https://doi.org/10.1108/978-1-80262-709-120221010
- Becker, F. et Becker, S. (2008). Young adult carers in the UK: Experiences, needs and services for carers aged 16–24. The Princess Royal Trust for Carers. https://www.cittadinanzattiva-er.it/wp-content/uploads/2020/02/Young-Adult-Carers-in-the-UK-experiences-Needs-and-Services-for-Carers-aged-16-24.pdf
- Clay, D., Connors, C., Day, N., Gkiza, M. et Aldridge, J. (2016). The lives of young carers in England: Qualitative report to DfE . Department for Education. https://assets.publishing.service.gov.uk/media/5a80eaec40f0b62305b8de15/DFE-RR499_The_lives_of_young_carers_in_England.pdf
- Arnett, J. J. (2023). Emerging adulthood: The winding road from the late teens through the twenties. Oxford University Press.
- Eskritt, M., Doucette, J. Robitaille, L. (2014). Does future-oriented thinking predict adolescent decision making? The Journal of Genetic Psychology, 175 (2), 163–179. https://doi.org/10.1080/00221325.2013.875886
- Brimblecombe, N., Knapp, M., King, D., Stevens, M. et Farias, J. C. (2020). The high cost of unpaid care by young people: Health and economic repercussions of providing unpaid care. BMC Public Health , 20 . https://doi.org/10.1186/s12889-020-09166-7
- Heyman, A. (2018). What do young adult carers learn through supporting family members? Extending the affirmation model. Disability & Society , 33 (8), 1191–1211. https://doi.org/10.1080/09687599.2018.1481014
- Orzeck, P. et Silverman, M. (2008). Recognizing post‐caregiving as part of the caregiving career: Implications for practice. Journal of Social Work Practice, 22 (2), 211-220. https://doi.org/10.1080/02650530802099866
- Earley, L., Cushway, D. et Cassidy, T. (2007). Children’s perceptions and experiences of care giving: A focus group study. Counselling Psychology Quarterly, 20 (1), 69–80. https://doi.org/10.1080/09515070701217830
- Thomas, N., Stainton, T., Jackson, S., Cheung, W.Y., Doubtfire, S. et Webb, A. (2003). ‘Your friends don’t understand’: Invisibility and unmet need in the lives of ‘young carers’. Child & Family Social Work, 8 , https://doi.org/10.1046/j.1365-2206.2003.00266.x
WHO ARE THEY?
STATISTICS
In Canada in 2018, an estimated 19% of young people aged 15 to 30 were caregivers. However, the lack of information about this cohort along with the absence of data on youth aged under 15 suggest that the actual number might in fact be higher (1).
The term young caregiver refers to children, teens and young adults who provide substantial, unpaid day-to-day care for a person due to a permanent or temporary disability (physical, mental, psychosocial or other).
While the care they provide is generally for a direct member of their family (parent or sibling), they may also support someone else they are close to (grandparent, friend, neighbour).
NOTE
The term family is used here in the broader sense, i.e., not limited to ties of blood or marriage.
The person in need of assistance may be disabled, suffer from chronic illness, or live with a mental and/or physical health problem or any other condition that requires support, care or supervision (2, 3). The young caregiver may be the primary caregiver (providing all the care) or the secondary caregiver (sharing the duties with someone else).
While the information presented in this trajectory concerns young caregivers in general, the focus is mainly on primary caregivers, those who assume the bulk of the care responsibilities (4, 5).
RELATIONSHIP WITH THE CARE RECEIVER
The person who receives the care and their position in the family will significantly influence the young caregiver’s trajectory. This person is generally a parent (6, 7, 10, 11), most often the mother (8, 12, 13, 14).
When the person in need of assistance is the mother, the young caregiver:
- Is more likely to have to care for their younger siblings as well (12);
- Takes on a greater share of the emotional labour (e.g., monitoring and meeting emotional needs), domestic and household tasks (e.g., housecleaning, laundry, groceries, cooking) and planning/logistics (e.g., paying bills, organizing transportation, coordinating appointments) (6, 15).
FAMILY SITUATION
Various aspects to the young caregiver’s family situation may influence their caregiving trajectory.
For example:
- Being part of a single-parent family: With no second parent to assume some of the burden, young caregivers must often help raise the other children in addition to supporting the parent with the incapacity (6, 9, 12).
- Being in a multi-child family: Young caregivers may be required to care for their younger siblings by preparing meals, helping with homework or serving as a playmate (7, 20).
- Being in a family where support is not equally distributed: : The unequal distribution of support between family members can be a source of strain. For example:
Since my brother has been sick, my dad has been really not helpful and that has worsened the situation . . . so things have changed between us.
Young caregiver (cited in 9)
Despite the negative repercussions of a complex family situation, being a young caregiver can also have its upsides. Positive outcomes include strengthened family bonds as well as feeling close to the person they care for (9, 16, 17).
Young caregivers of a parent with a mental health condition
These situations can be characterized by levels of tension and stress that will vary based on the condition requiring care. The atmosphere at home may be calm and low-key, or it may be explosive, characterized by arguments, shouting and unpredictable behaviour (21, 22). To avoid conflict and lessen the chances of triggering a crisis, members of these families might minimize their interactions, thereby exacerbating their lack of interpersonal and emotional connection (21).
In some cases, the parent’s mental health may pose a threat to the young caregiver’s safety and/or physical integrity (e.g., emotional blackmail, negligence, domestic violence, sexual/verbal/physical assault, different forms of abuse) (12, 22, 23, 24). For some young caregivers, their trajectory could transform in a negative and traumatizing experience, with major repercussions on their life course (11, 22, 24, 25, 26).
THE CONDITION REQUIRING CARE AND LEVEL OF CARE PROVIDED
Young caregivers will undergo different experiences based on the specific needs of the person they care for. The intensity and duration of the tasks they must perform in fulfilling the role can significantly affect their health and well-being; it can also impact their familial and social relationships (9, 13). The greater the support needs, the more numerous and demanding the responsibilities, and the higher the likelihood of caregiver burnout (physical and/or emotional) (13, 27). To fully understand how the burden of care affects young caregivers, it is essential to first understand and assess the condition requiring care (6).
Young caregivers of a parent with a mental health condition
These youth must often fulfil a range of support needs and assume a high level of responsibility (12, 22, 23, 28, 29, 30). For example, they may need to:
- Emotionally support their parent;
- Clean the family home after substance use binges;
- Develop strategies to control or reduce their parent’s substance use;
- See to their parent’s safety (e.g., by warding off self-harm, injury or suicide attempts);
- Ensure the mental and physical safety of their younger siblings;
- Provide financial or material support, e.g., handing over earnings, lending money to the parent, stealing food or paying for the medical or educational needs of other family members;
- In extreme cases, act as a guarantor for a parent who has legal issues.
The intensity of care provided can also vary depending on the nature of the parent’s condition (23, 30). For example, young caregivers may feel the need to remain on constant alert for a parent who is experiencing a crisis or a substance use episode (9, 23, 31):
Normally I can’t sleep because if my mom’s been drinking . . . I worry about if she fell and maybe broke her leg and how long will she be there until I wake up and help her . . . so I tend to stay awake until she falls asleep . . . but sometimes she stays up all night so I’m up all night.
Young caregiver (cited in 9)
STIGMA AND INVISIBILIZATION
As a group, young caregivers are among the most unseen, unrecognized and unsupported populations in the caregiving spectrum (8, 9, 32, 33).
For reasons that include a paucity of knowledge about their lived realities, negative social perceptions about incapacity (notably mental health issues or physical disability) and/or a particular family context, young caregivers are very often the victims of stigma and discrimination (6, 14, 26, 34, 35, 36). To counter this, they may go to great lengths to avoid drawing attention to their role and family situation, thus contributing to their own invisibilization (6, 8, 14, 35, 36).
Some young caregivers fear being singled out by the youth authorities, believing this could cause their family to be broken up (28, 34, 36, 37). Such fears represent a significant barrier to service access for these youth, since it can encourage them to conceal their caregiver status. Remaining alert to any signs that a young person might be a caregiver and meeting with them to offer reassurance and support are therefore of vital importance.
Young caregivers of a parent with a mental health condition
Stigma and taboos around mental health conditions can exacerbate the negative repercussions experienced by young caregivers, subjecting them to prejudice, discrimination and social isolation (11, 25, 38, 39).
Even within the family, the care receiver’s mental health issues may remain unaddressed, whether due to discomfort with the topic or the internalized negative attitudes of the care receiver and/or other family members. This simply reinforces the culture of silence around young caregivers, both within and outside of the family (8, 21, 28).
GENDER
People who identify as female are over-represented among young caregivers (7, 8, 11, 12, 14, 28, 29, 30, 43, 45, 46, 47, 48, 49, 50, 51). Gender-related expectations surrounding the provision of care are among the factors that influence an individual’s likelihood to fulfil the role of caregiver with one or more people (10, 52).
AGE
Age plays a decisive role in the trajectory of a young caregiver. Caregiving may start early, even as young as age three or four, and can continue right up to adulthood. The earlier the role begins, the longer the period of care provision tends to last (12).
The ability to provide support will depend on the young caregiver’s physical, motor and emotional development, all of which evolve with age. Because of this, young caregivers tend to assume increasing responsibility as they get older (8, 32).
Adolescence is when young caregivers are most apt to feel constrained by their role as they try to balance family obligations with their social life, schooling, other needs and sometimes, the demands of a part-time job (8, 10, 13, 28, 37, 44).
SOCIOECONOMIC SITUATION
Another influence on the trajectory of a young caregiver is the family’s financial situation. Indeed, young caregivers who must cope with financial strain will face additional stress and tension, both personally and within the family. Financial insecurity can also complicate or hinder access to goods, services and support for both the caregiver and the person cared for (10).
Young caregivers are far more likely than their non-caregiver peers to experience financial insecurity or poverty (6, 14, 34, 53). Indeed, due to the challenges related to the specific condition affecting the person who needs care, families often encounter financial difficulties. Being subject to financial insecurity can significantly impact a young caregiver’s professional and economic future — for example, by obliging them to enter the labour force early to help support the family (6, 14, 34, 53).
ETHNOCULTURAL DIVERSITY AND 2SLGBTQIA+
Being from a minority or racialized ethnocultural group or identifying as 2SLGBTQIA+ are factors that can significantly influence the caregiving trajectory. Young caregivers from minority or racialized groups in particular may experience intersecting forms of oppression, subjecting them to even greater invisibility and stigma than other caregivers (29, 54).
Having to contend with intersectionality over and above their care burden can exacerbate the vulnerability of these caregivers, resulting in health issues, unstable socioeconomic circumstances and even homelessness (29).
What’s more, their own experience may be compounded by difficulties encountered by the care receiver as they navigate through the health & social services system. For example:
I think that hospitals don’t always know how to treat immigrants and sometimes there’s a lot of bias there or assumptions that people don’t understand them or that . . . so many doctors would talk to me and not him; and I’m like; he’s lived here for 30 years, his English is beautiful, so what, he has an accent.
Young caregiver (cited in 54)
Lastly, being from an ethnically diverse background can impact the type of tasks performed. These young caregivers may, for example, have the added responsibility of interpreting for their parent (e.g., translating documents, conversations, information during medical appointments) (55, 56).
Researching this trajectory has brought to light the lack of knowledge on the lived realities of young caregivers who identify as 2SLGBTQIA+. However, we know that in general, adult caregivers from sexual and gender minorities are more vulnerable, more apt to be overlooked and experience higher levels of distress compared to their heterosexual and cisgender counterparts (57). It is therefore crucial to consider the lived experience and family context of young caregivers who identify as 2SLGBTQIA+ in order to provide support adapted to their specific realities.
ORGANIZATION AND ACCESS TO SERVICES
The organization and access to appropriate care and social services may lead to better outcomes in the caregiving trajectory. Such assistance, which can take many forms (e.g., support groups, peer support, respite services), is essential to alleviating care-related constraints and meeting young caregivers’ diverse needs (13, 40, 41).
Certain aspects to care and social services coordination can facilitate or, conversely, obstruct access to such services, thereby significantly affecting the young caregiver’s trajectory.
- When the person in need of assistance receives medical or psychosocial follow-up, young caregivers are more likely to access such services themselves, due to the likelihood that their role will have been identified by health and social services professionals (6, 26).
- Programs and services that acknowledge and act on the full set of needs experienced by the caregiver and their family allow young caregivers to be recognized and benefit from initiatives aimed primarily at supporting the person in need of assistance (22, 23).
- Staff and resource shortages delay access to services, which can result in long waits before assistance is received. The sooner support is received in the trajectory, the lower the negative repercussions linked to the role (13, 29, 42).
- Eligibility for most youth services ends at age 18, while services specific to the transition toward adulthood can be unduly complex if not entirely absent (42). Cut off from the services they had previously received, young caregivers can find it difficult to find new forms of support (13).
- Cumbersome service infrastructures can make it onerous to manage certain legal matters for which young caregivers may be responsible (e.g., the lease, medical information requests re. the parent’s state of health, incapacity mandates, legalization issues) (22, 29, 43).
- Confidentiality requirements can complicate communications between young caregivers and healthcare personnel. For example, practitioners cannot share health information about the care receiver without their express consent, even if this information is crucial to the young caregiver’s ability to provide adequate care and support (8).
“Sorry, I can’t tell you, obligation of confidentiality. Your [schizophrenic] mother has to give permission first.” I was so frustrated! […] I did not get any information but was the one who organizes everything.
Young caregiver (cited in 8)
ENTRY INTO CAREGIVING
‘NATURAL,’ GRADUAL ENTRY
The so-called ‘natural’ and gradual way into care generally occurs at a young age, i.e., during childhood, with the young person typically describing being a caregiver for as long as they can remember (12, 19). In these situations, identifying a particular point in time when care provision began is impossible (8, 11, 12, 13, 58). While there is nothing ‘natural’ about being shouldered with care responsibilities as a child, in these cases, it amounts to a reality that has always been part of their family structure:Repercussions
When young caregivers begin ‘naturally’ and gradually providing care for a person, they quickly normalize the role. This may influence their trajectory inasmuch as their identify becomes enmeshed with their status as caregiver (36).
Young caregivers of a parent with a mental health condition
In the literature, these young caregivers commonly assume the role gradually and naturally (23).
SUDDEN ENTRY
A sudden entry into caregiving is more typical of the experience of teenaged or young adult caregivers, although it can sometimes occur during childhood.
It typically follows on a diagnosis, the birth of a sick or disabled sibling, or the death or departure of a parent who had been the primary caregiver (8, 13, 25).
Young caregivers may thus be able to identify a specific change in the family structure that marks the moment when their caregiving responsibilities began:
Repercussions
When the entry into caregiving is sudden, young caregivers can find themselves having to organize and coordinate care, services and support for the person in need of assistance — a role they must assume on top of juggling the challenges of adolescence and the transition to adulthood (6, 28, 37, 55).
RESOURCES AND SUPPORT
Young caregivers of a parent with a mental health condition
Social stigma around mental health issues and their sufferers can cause young caregivers, the person in need of assistance or other family members to avoid seeking help (28, 38, 39).
ACCESS TO RELIABLE INFORMATION
A key component of accessing support is obtaining accurate, reliable information, not just on the role of caregiver but also on the health of the person cared for (27). Technological tools like YouTube videos, social media, apps and online forums are relevant and interesting ways of getting information across to young caregivers (37), who also tend to favour them since they enable anonymous and instant access from anywhere (37, 43). Such tools can help young caregivers break through their isolation and surmount the barriers to seeking help or the fear that stops them from communicating face to face (11, 60).
Young caregivers of a parent with a mental health condition
Being able to obtain information on mental health conditions helps to demystify them as well as deconstruct the surrounding stigma. Helping young caregivers better understand the challenges facing their parent can also relieve some of the frustration or anger they may feel (38, 43).
PEER SUPPORT GROUPS
Peer support groups are often highly appreciated by young caregivers, providing a chance to share their experiences and discuss the challenges they face. Such groups can break through isolation and loneliness, providing access to information as well as to activities that offer some respite from the family situation (11, 13, 37).
Interacting with support groups can help young caregivers develop coping strategies, resilience and autonomy. Through such interactions, they can also become better able to identify their feelings, making it easier to express and discuss their challenges (19, 37).
- Deconstruct prejudices about mental health;
- Develop coping strategies;
- Develop communication skills;
- - Feel optimistic about the future.
BETTER SUPPORTING THE CARE RECEIVER
The availability of services and resources adapted to the care receiver’s condition remain among the best ways of assisting young caregivers, mainly by lightening their load (40, 41).
Repercussions
Providing varied services and resources to people with mental or physical health conditions eases the burden on those around them, particularly their caregivers, who no longer have to bear the responsibility alone (27). However, even with such support, many young caregivers, motivated by their emotional ties and desire to help, will continue to care for the person and will therefore still need support to address their own needs (40).
Young caregivers of a parent with a mental health conditionPrograms with a holistic, family-centred approach offer support to parents and young caregivers alike. Such an approach aids not just the care receiver, but also the entire family.
Offering many benefits, these programs provide a chance to (22, 23):
- Access support tailored to specific situations and challenges;
- Address taboo topics like dependency or the experience of being a parent living with a mental illness;
- Connect with other parents and families, making it possible to form relationships and break out of social isolation;
- Develop better self-esteem, learn new coping strategies and improve communication within the family.
SUPPORT AT SCHOOL
The school environment is a crucial factor in the trajectory of young caregivers, given that it is often their primary venue for social interaction. Schools can be vital places of support or, equally, unsafe spaces rife with injustice where young caregivers might experience bullying in relation to their role (14, 37, 61, 62).
Similarly, the attitudes of teachers and other educational professionals can positively or negatively impact the educational pathway of young caregivers (13, 14, 37, 63).
Without the support of school staff: Many factors — lack of time, fatigue, stress, anxieties — can cause young caregivers to show poor academic performance. Without support from school staff, they may find themselves struggling or even failing. This can have serious repercussions for their future, notably by limiting their opportunities for higher education (13).
With the support of school staff: : Educational personnel who recognize and support young caregivers can alleviate their stress and improve their quality of life by offering better learning conditions (14). For example, more flexible assignment completion deadlines can help young caregivers reconcile home responsibilities with their studies (37, 63).
To adequately support young caregivers, teachers and other professionals must consider the specificities of their situation (37, 63). Schools can also innovate by adapting their services to different situations. For example, having the option to use online learning tools can help young caregivers balance learning with their care work (19).
END OF CAREGIVING AND POST-CAREGIVING PERIOD
Being the caregiver of a person with an incapacity may span numerous developmental stages, from childhood through adolescence and into adult life.
Caregiving can come to an end for many reasons: the death of the person who received the care (10), the arrival of new people in their life, their placement in a facility, and so on.
Once their role as caregiver comes to an end, many caregivers undergo a period during which they must redefine who they are (36, 68, 69, 70). This phenomenon is particularly present among young people who have interiorized the role. It is therefore important to offer young caregivers support and resources as they transition out of this phase and into new areas of life.
THE TRANSITION TO ADULTHOOD
Roughly spanning the period from ages 16 to 25, the transition to adulthood is a time during which young people develop their autonomy and independence while forming new relationships and lifestyle habits (64, 65). This stage is all the more crucial for young caregivers, whose decisions at this time can be strongly influenced by their role (13, 17, 28, 37, 66)[My training] was in Lévis and I had a chance to stay there after it was done. [But I had to] go back to La Pocatière to take care of my dad. So it influenced my life anyway, it takes up space. [free translation]
Catherine, former young caregiver (cited in 59)
Many young caregivers transition to adulthood without any support or information. They may also hesitate to share their fears, anxieties and questions with their parents so as not to add to the family burden (17).
Young caregivers of a parent with a mental health condition
For these youth, the transition to adulthood may prove extremely complex and difficult, particularly when the family situation is chaotic or if they receive little by way of parental or social support (12, 28, 29). Offering tools and resources that can mitigate the potential negative repercussions of caregiving early in the trajectory is crucial to helping young caregivers navigate this period (28).
POST-SECONDARY STUDIES AND CAREER CHOICES
The fact of being a caregiver can significantly impact the decisions young caregivers make about their studies:
- The educational establishment may be chosen based on location and proximity to the family home to allow the young caregiver to continue supporting the person (9, 13).
- The number of courses/program schedule may be chosen to align with caregiving responsibilities (9, 13).
- The choice of field of study or career may be linked to the young person’s identification with their role as caregiver. When this role is internalized, young people will gravitate ‘naturally’ (i.e., without it necessarily being an informed or even a desired choice) toward professions or fields related to care or social services where they can apply the skills, knowledge and expertise acquired during their time as a caregiver (9, 13, 67).
Some caregivers appreciate the flexibility afforded by higher education (13, 67). Others, however, feel their caregiving responsibilities leave them no choice but to put off their post-secondary studies:
I doubt I can leave them and I don’t want anything bad to happen to them so I am thinking about holding back on college and university until they are better . . . even if I have to wait until I’m 40 I will . . . but I won’t go until they are better.
Young caregiver (cited in 9)
Repercussions
For young caregivers, undertaking further education often means juggling the complex logistics of transportation, classes, schedules, assessments and sometimes part-time employment with their caregiving tasks (13).
EMPLOYMENT
Young caregivers aged between 16 and 25 are more liable to be unemployed or receive social aid than their non-caregiver peers (11, 58, 66). Indeed, a certain proportion will be obliged to leave a job that interferes with their ability to properly care for the person (9, 13). Conversely, some will enter the labour market very early on in search of part-time work to help support the household financially.
It is crucial that young caregivers have a good employer who can offer scheduling flexibility — for example, allowing them time off to take the person cared for to appointments or respond to emergencies (13, 67).
Repercussions
Due to their caregiving responsibilities, young caregivers may experience greater difficulty meeting their immediate material needs, a reality that raises their likelihood of experiencing economic hardship once they reach adulthood (6, 14, 34, 53).
LEAVING THE FAMILY HOME
For the majority of young caregivers, leaving the family home does not imply the end of caregiving. Indeed, this significant life transition can be highly complex for all who are involved, including the person who receives the care and those around. Many young caregivers may set out to leave home as soon as possible, some even striving to put the greatest possible geographical distance between them and their complex family situation (17, 30). Still others move out but find themselves feeling obliged to return if the care receiver continues to need support and they are unable to detach from their role (17).
It’s hard because I never imagined that I would still be living at home at 23. But your choices . . . your choices are limited because you can’t . . . I can’t move out.
Young caregiver (cited in 13)
Repercussions
Young adults who have had to provide a high level of care have more difficulty projecting themselves into the future and leaving the family home, as well as formulating plans and aspirations (13). The decision to leave home can be particularly difficult, often arousing feelings of guilt tied in with having to choose between personal/professional opportunities and the health and wellness of the person they care for, sometimes even that of the whole family (9).
LIFE PARTNERS AND FUTURE FAMILY CHOICES
Meeting a partner can prove particularly complex for young caregivers, whose many responsibilities can make it all but impossible to find the time to meet new people and form romantic relationships (30). The challenges of caregiving may also influence the desire to have a child. Indeed, young caregivers can anticipate obstacles and fear being unable to reconcile the needs of their future children with the ongoing support needs of their parent.
Repercussions
Many young caregivers feel caught between their caring responsibilities and the demands or expectations of a partner or relationship (30). Conversely, a partner who is sensitized to the realities of caregiving can be a source of emotional support and help young adult caregivers cope by making them feel less alone. Such a situation can provide some much-needed stability.
Stability within my relationship is something . . . as unstable as my life has been, it’s the opposite for my couple.
Young caregiver (cited in 28)
Young caregivers of a parent with a mental health condition
I said to [him] when we got engaged, I think we should write a pre-nup in case I go mad and I’m horrible to you like my mum was.
I said to [him] when we got engaged, I think we should write a pre-nup in case I go mad and I’m horrible to you like my mum was.
Young caregiver (cited in 30)
As with other young caregivers, the fact of having to provide care for many years may affect the decision to have children (30). Specifically, the young caregivers can:
-
- Feel unable to rely on their parent as a supportive grandparent.
- Foresee complications in the relationship between their child and their parent with a mental health condition.
- Feel emotionally ill-equipped to parent, particularly if they lacked parental support while growing up:
The trauma leaves its mark. You’re a long time putting yourself back together, finding out who you are. So now here I am, a parent who had no real role models. I think I’m actually a pretty good parent, but where do I get that from? [free translation]
Viviane, former young caregiver (cited in 59)
RECONFIGURING THE ROLE OF CAREGIVER
Once they reach adulthood, many young caregivers experience a transitional period during which, for various reasons, their caring role is reconfigured. For example:
- The young caregiver leaves the family home (e.g., moving in with a partner, moving away for work and/or studies, or just to escape a complex family dynamic);
- The care receiver accesses services or moves into assisted living:
I left home when Mum was finally provided with the nursing care she needed.
Young caregiver (cited in 27)
Different sociodemographic and contextual factors will vary how the caring role is reconfigured. For example, being from a minority group or subject to financial precarity can complexify access to care and services for the person in need of assistance (10, 54, 55, 56).
Young caregivers of a parent with a mental health condition
As is the case with other caregivers, the period during which the caring role is reconfigured can be highly stressful for young caregivers whose parent has a mental health condition. Here, the stress may be intensified depending on the specific nature of the condition. For instance, the thought of leaving a parent who suffers from depression or suicidal ideation alone and unsupported can cause the caregiver significant anxiety (22, 28).
The role may also be reconfigured when the parent receives support, treatment or stops using substances, a period that, for the caregiver, can likewise prove disruptive:
RECOGNITION OF YOUNG CAREGIVERS
For young caregivers, having their role recognized by their immediate circle and more broadly, by society, is a key factor in their caregiving journey. Indeed, whether or not their role is acknowledged will have significant implications for their life course.
More widespread recognition of the role is a crucial first step to bringing the experiences and needs of young caregivers to the fore. Not only does this validate their role socially, but it also helps reduce psychological distress by fostering understanding and support from those around them (18, 37).
Recognition may also help protect young caregivers inasmuch as it allows them to:
- obtain relevant information on their role (60);
- access a range of resources like young caregiver support groups;
- improve communications with their family and friends, health & social services professionals and the educational milieu (8, 13, 37, 38).
Repercussions
The quicker young caregivers are recognized by family or professionals, the more quickly they’ll access information and support, which can mitigate the negative repercussions of their role on their trajectory (60). Recognition can also help young caregivers protect their independence by enabling them to set boundaries regarding their care-related tasks and responsibilities (26). Without recognition, young caregivers may experience distress, isolation and a lack of support (19, 61).
Health and social services professionals have a crucial role to play in fostering the recognition of young caregivers. Often in direct contact with the person in need of assistance, they are well placed to note the young person’s role as a care provider (6, 26, 37). School staff can likewise do much toward identifying young caregivers, a largely hidden population that’s frequently overlooked by other support services (61). Health, social services and educational professionals must therefore be aware of the situation of young caregivers and the related issues if they are to effectively provide recognition and support.
Young caregivers of a parent with a mental health condition
Stigma, taboos and the culture of silence around mental health issues further complicate the identification of young caregivers (8, 21, 23, 25).
Many young caregivers, not realizing that there are places where they can go to discuss the issues affecting them and their family, are unaware that their situation is anything other than normal. Indeed, awareness of their role is often only prompted through contact with their non-caregiver peers: