As a result of their caregiving-related roles and responsibilities, caregivers’ personal, social, professional, and financial situations can be greatly affected (Bom et al., 2019). Caregivers can spend many years caring for someone who is in a vulnerable state and thus, may have to reorganize their lives and identities to adapt to the caregiving role. Pivotal research in the past decade has demonstrated that caregivers can experience increased anxiety, psychological distress, fatigue, and social isolation, among other consequences (Sinha, 2013; Turcotte, 2013). In palliative care contexts, the high demands of caregiving can be even more physically and emotionally depleting.
Yet when the person being cared for dies, the needs of the caregivers do not disappear. The experiences of caregivers can considerably affect bereavement as the person transitions into the post-caregiving phase (Orzeck, 2016). This is particularly significant when the bereaved person’s sense of identity and purpose was highly connected to the caregiving role (ibid). Bereavement of a loved one is experienced differently by caregivers as opposed to people who were not involved in direct caregiving due to the compounded losses (Breen et al., 2020). Because of the challenges associated with the caregiving roles, it can take caregivers longer to adjust to their new reality. There are many factors that can influence the caregivers’ experiences of grief, including the palliative care approach and context in which the care was provided (Van Pevenage et al., 2019).
Each individual’s caregiving experience uniquely affects their adaptation in bereavement. In a research study on the experiences of bereaved family caregivers, Holtslander et al. (2017) noted that the impact of caregiving on bereavement also varies depending on the type of relationship between the caregiver and care receiver, the nature of the illness and death, and the nature of the caregiver’s goodbye to the care receiver. Other factors include advance care planning for the loss (Sussman et al., 2017; Kaasalainen et al., 2020), the perception of ‘having done one’s best’, and the perceived satisfaction of experiences with health care staff throughout the caregiving journey. Additionally, aspects of social identity, such as gender and sexual orientation, can further impact the bereavement experiences of the individual (Holtslander et al., 2017). Although the majority of caregivers are able to adjust in bereavement with the existing support of friends and family, research indicates that 35.2% of caregivers may be at moderate risk for prolonged grief and require additional psychosocial support (Aoun et al., 2015). Another 6.4% of bereaved caregivers may be at high risk of experiencing prolonged grief and need specialized mental health services (Aoun et al., 2015).
A range of psychosocial support services are needed to help caregivers in bereavement (Breen et al., 2017). However, in Quebec, after a person dies at home, in a palliative care unit or in a long-term care setting, there is limited follow-up support for their bereaved caregivers with inequitable access to services. Caregivers do not typically have a file opened in the public health and social care system, and thus, there is little to no follow-up to see how they are coping after the person they cared for has died. It becomes the bereaved caregivers’ responsibility and challenge to access grief support services if they need help during this period of loss. In Quebec, there are no formal protocols or guidelines to ensure a standardized bereavement follow-up to caregivers from the public health and social services establishments.
The Caregiver Grief Connexion (CGC) is a new initiative responding to this gap in services. Funded by the Canadian Centre for Caregiving Excellence, the Caregiver Grief Connexion will share knowledge, skills, and resources for bereaved caregivers, families, friends, and health and social care workers who support them. This co-designed initiative is spearheaded by social workers Dr. Pam Orzeck (McGill University School of Social Work), Zelda Freitas (CIUSSS West-Central Montreal), Patrick Durivage (Centre for Research and Expertise in Social Gerontology), Dr. Tamara Sussman (McGill University School of Social Work), Dr. Shari Brotman (McGill University School of Social Work). Beginning in fall 2023 and being developed over a 3 year period, the CGC’s projects include developing educational training materials for professionals and compiling resources on an open access website, as well as the development of a support group model and telehealth outreach program for bereaved caregivers, which will be piloted in the CIUSSS West-Central Montreal.
Stay tuned for the launch of the CGC website fall 2023 where more information and updates will be available.
Listen to CGC member Zelda Freitas discuss this important issue
References
Aoun, S. M., Breen, L. J., Howting, D. A., Rumbold, B., McNamara, B., & Hegney, D. (2015). Who needs bereavement support? A population based survey of bereavement risk and support need. PloS one, 10(3), e0121101.
Bom, J., Bakx, P., Schut, F., & Van Doorslaer, E. (2019). The impact of informal caregiving for older adults on the health of various types of caregivers: A systematic review. The Gerontologist, 59(5), e629 to 642.
Breen, L. J., Aoun, S. M., O’Connor, M., Johnson, A. R., & Howting, D. (2020). Effect of caregiving at end of life on grief, quality of life and general health: A prospective, longitudinal, comparative study. Palliative Medicine, 34(1), 145–154.
Breen, L. J., Aoun, S. M., Rumbold, B., McNamara, B., Howting, D. A., & Mancini, V. (2017). Building community capacity in bereavement support: Lessons learnt from bereaved caregivers. American Journal of Hospice and Palliative Medicine®, 34(3), 275-281.
Holtslander, L., Baxter, S., Mills, K., Bocking, S., Dadgostari, T., Duggleby, W. & Peacock, S. (2017). Honoring the voices of bereaved caregivers: A metasummary of qualitative research. BMC Palliative Care, 16(1), 1-18.
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Sinha, M. (2013). Portrait of caregivers, 2012 – Spotlight on Canadians: Results from the General Social Survey. Statistics Canada.
Sussman, T., Kaasalainen, S., Bui, M., Akhtar-Danesh, N., Mintzberg, S., & Strachan, P. (2017). "Now I don't have to guess": Using pamphlets to encourage residents and families/friends to engage in advance care planning in long-term care. Gerontology & Geriatric Medicine, 3, 2333721417747323.
Turcotte, M. (2013). Family caregiving: What are the consequences? - Insights on Canadian Society. Statistics Canada.
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