Trajectory of Young Caregivers

WHO ARE THEY?

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).

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).

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:

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).

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).

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).

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).

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:

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).

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).

ENTRY INTO CAREGIVING

The entry into caregiving may occur during childhood, adolescence or early adulthood. Young people become caregivers in one of two ways: ‘natural’ or gradual entry and sudden entry.

‘NATURAL’ AND 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:

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:

RESOURCES AND SUPPORT

Various forms of support are available to young caregivers. Crucially, having access to the appropriate services early on in the trajectory can help young caregivers and their families deconstruct the notion that their role is ‘natural’. This makes it possible for children, teens and young adults who provide care to avoid building their identity solely around the fact of being a caregiver and instead, thrive in other areas of life (13).

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).

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).

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).

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.

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):

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:

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.

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).

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.

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:

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).