Caregiver grief, diversity & intersectionality

Gender and sexuality are also factors that can influence the bereavement experience of caregivers. Caregiving is a gendered issue, as women generally perform the caregiving roles in society, and women make up a higher percentage of caregivers in Canada (Canadian Centre for Caregiving Excellence, 2022).

Gendered social norms and heteronormative assumptions of how a person should grieve can influence the way that a person expresses their emotions (for example, women are expected to cry and men are expected not to display emotion). This can lead men caregivers to feel more invisible, more isolated, can prevent them from seeking help and can lead to difficulty finding support in bereavement (Lopez–Anuarbe & Kohli, 2019). 

Sexuality is a topic that is taboo in general, and especially so regarding individuals who are aging, caregiving, and dying. Two-spirit, lesbian, gay, bisexual, transgender, and queer (2SLGBTQ+) identifying caregivers may experience stigmatization and exclusion in healthcare and palliative care contexts. 

“Consider, for example, the multiple losses incurred because of the death of a partner in a gay or lesbian relationship. Because of discriminatory attitudes, the bereaved caregiver’s grief  may not be acknowledged or allowed to find its expression. The gay or lesbian disenfranchised  griever may be refused the choice of being with their loved one at the time of death. Not recognized as a legitimate  mourner,  they may be excluded from death rituals, such as the funeral, and may possibly lose their home because the relationship is not recognized legally.” (Bevan & Thompson, 2003, p. 188-189) 

2SLGBTQ+ people also often have less social support than straight and cisgendered people, which can impact their overall caregiving journey. In addition, there is much less research and literature on the experiences of 2SLGBTQ+ caregivers and care recipients, making it harder to meet their needs. Gender and sexuality are both important factors that play a role in bereaved caregivers’ lives. 

• For information and resources on grief in 2SLGBTQ+ communities, see Canadian Virtual Hospice: https://www.virtualhospice.ca/2SLGBTQ

“[Ableism] may be defined as a belief system, analogous to racism, sexism or ageism, that sees persons with disabilities as being less worthy of respect and consideration, less able to contribute and participate, or of less inherent value than others.” (Ontario Human Rights Commission, 2016, p. 3) 

Caregivers with disabilities may face physical or communication barriers to accessing bereavement support services. As with each of the factors described in this article, ableism can lead to stigmatization and social isolation for bereaved caregivers with a disability. Caregivers with a disability can also face additional financial and employment challenges. 

“The  experiences  of  loss  for  those  who  have  a  disability  can  be  exacerbated because  of  painful  alienating  and  stigmatizing  social  responses  to  disability.” (Bevan & Thompson, 2003, p. 183)

In some cases, the deceased care recipient’s death may also be framed by others as a ‘positive thing’, which can further impact the caregiver’s grief. 

In Western society where youth is highly valued, aging often comes with negative perceptions and stigmatization. Caregivers may have long faced persistent ageism in their communities, in society, in the healthcare system, etc. Prevailing societal beliefs, such as ‘it’s normal for old people to die’, ‘it was their time’, or ‘they should be used to death by now’ can lead grief to become ignored and disenfranchised (Bevan & Thompson, 2003). There is stigma in our society about different diseases and age, such as dementia, and that can impact the caregiver’s experience in receiving support.

On the other hand, there may be societal beliefs that invalidate or dismiss the grief of young individuals and young caregivers because ‘they don’t understand death yet’ or ‘they haven’t known loss yet’. Children and teenagers are sometimes excluded from funeral or burial rituals because they are presumed too vulnerable and in need of protection.

“Assumptions  that  children  will  not understand death and dying can be tragically misleading and damaging, in that their needs will not be recognized, acknowledged or met.” (Bevan & Thompson, 2003, p. 182)

 Oftentimes, we do not acknowledge or validate children and young adults’ grief, nor the need for support.  Whether younger or older, caregivers deserve to be recognized for their invaluable role and receive the support they need throughout the caregiving trajectory. 

• For more information on talking to children about death, see the links below:
• Youth Grief website for grieving youth: https://youthgrief.ca/
• Article from Talk Death titled Talking to Children About Death, Guide and Resources: https://www.talkdeath.com/talking-to-children-about-death-guide-resources/ 
• Article from Canadian Virtual Hospice titled Talking to Children and Youth About Death: https://www.virtualhospice.ca/en_US/Main+Site+Navigation/Home/Topics/Topics/Communication/Talking+with+children+and+youth+about+death.aspx 
• For information and resources for young caregivers: https://amiquebec.org/youngcarers/

“Historically, the theories that ground the thanatology professional body of knowledge stemmed from white-centric, individualized, Western ideals of typical grief and bereavement […]. This reality was supported in part by a majority of bereavement research conducted with White individuals in Westernized contexts in the earlier 20th century.” (Thacker & Duran, 2022, p. 1128)

In recent decades, both research on and practice with caregivers have begun to recognize the unique grief experiences of Black, Indigenous, and People of Color (BIPOC). These experiences have been impacted by colonialism, systemic oppression and discrimination (Thacker & Duran, 2022). They are also impacted by dislocation, marginalization, loss of culture, loss of language, loss of land, etc. 

BIPOC caregivers may experience more challenges in accessing inclusive bereavement support services after the death of their loved one due to cultural, linguistic, or financial barriers, and scarcity of resources that respond to their needs. 

Additionally, many cultural traditions around grief have been systematically targeted and erased by colonialist policies, who instead imposed a Western ideal of bereavement.

“It is not only that people experience the world and grieve differently based on their cultural background, but that oppressive structures also shape how they make meaning of grief.” (Thacker & Duran, 2022, p. 1135)

Unfortunately, systemic racism continues to impact the social determinants of health for racialized caregivers. 

This issue also affects care providers (formal caregivers), as 27% of workers are racialized women in home health-care services in Canada (Canadian Centre for Caregiving Excellence, 2022). Since care providers and caregiving roles are disproportionately carried out by racialized women, it is critical for caregiver bereavement support services to be culturally safe and mindful of the multifaceted identities and experiences of caregivers. 

Religion and spirituality can act as both a resource (helpful) or a barrier (challenge) for a bereaved individual, based on their personal experiences and perspective (Van Pevenage et al., 2019). Faith-based religion and spirituality can provide rituals and traditions around death and bereavement, and frameworks for beliefs around death. These can provide structure and comfort for bereaved caregivers, allowing a sense of meaning in the loss. A religious community can also offer social support and connection to the bereaved.

However, as with each factor, religion and faith is highly personal. For some caregivers, religion can be a source of conflict and create feelings of guilt and shame, depending on the levels of openness and acceptance in their particular community. 

A caregiver’s relationship with religion or spirituality may also change as a result of their grief, as the caregiving role and death of a loved one is a monumental shift in their life. Through the caregiving trajectory and as their involvement in caregiving tasks increased, caregivers may have sacrificed their support system including their involvement in spiritual and religious associations. 

At the same time, grief and bereavement might offer an opportunity to deepen and concretize a caregiver’s  existing beliefs, spirituality, culture, or religious observance. As a result of the caregiver’s lived experiences, religion and spirituality may play a role in the bereavement process.

A person’s culture can significantly impact their experience of caregiving and bereavement. Each culture may bring a rich history and tradition around taking care of others as well as beliefs about living, dying, and death. Of course, culture is a flexible and fluid concept that is unique to each individual. A caregiver’s relationship with their culture can change throughout their life and experiences.

As with religion & spirituality, different aspects of one’s culture can be helpful and/or less helpful in the grieving process. Culture can sometimes be a source of conflict between generations, especially if the customs do not bear the same significance to them. For these reasons, it can be helpful for each person or caregiver to reflect on their own culture to see what traditions and rituals can be a source of support and comfort. 

• To learn about how different cultures perceive death and dying, visit Canadian Virtual Hospice: https://livingmyculture.ca/culture/