Your Experience Can Help Change the Future of Grief Care
The “Identifying Individuals in Need of Support While Caregiving and in Bereavement” project offers an opportunity to share your experiences as a caregiver for someone with a life-limiting medical illness or as an individual grieving the loss of someone significant to you. For additional information on the study and to determine if you are eligible, please click this link or contact our study team at firstname.lastname@example.org.
As a therapist, I have noticed each of the caregivers and bereaved individuals I have worked with at some point question what it looks like to “grieve right” or if they “should” grieve in a certain way. Even in my personal bereavement experiences, I have found myself wishing there was a clear answer, that grief was more predictable, and that there was a prescription for coping with such excruciating pain.
But in reality, for many, grief can last a lifetime; as we face anniversaries, milestones, and are reminded of losses, we will grieve. For caregivers, grief can come in many forms, including grieving the many losses and changes that occur during the course of an illness such as dementia or advanced cancer, along with anticipatory grief about what a future without the physical presence of their loved one will look like. Those bereaved by the death of someone significant may experience grief that can be life-changing. For some, grief becomes a background presence over time, with the frequency and intensity of its waves dissipating in a way that allows us to co-exist with our grief. Sometimes, though, grief can take over and make it difficult for someone to engage in meaningful activities and responsibilities. In those cases, some may seek support for their grief from a professional counselor or therapist.
What grief-specific resources already exist?
Despite increasing need for such support for both caregivers and bereaved individuals, grief-specific care services are often limited, even in highly resourced places such as large medical centers. Because of this and many other systemic issues, distressed caregivers and bereaved family members and friends may “fall through the cracks.” Those that need additional support often report also having a difficult time accessing grief care in the community. While we ultimately need larger scale solutions for these issues, such as improved resource allocation for psychosocial care in medical centers, training of mental health providers in grief, and efforts to sustain the workforce, in the interim, smaller scale solutions can facilitate connection to services for those in need.
Screening caregivers or bereaved individuals for those who may need more psychosocial support is one avenue for providing improved grief care.
So, what can we do now?
To address this gap in care, my colleagues and I developed a brief measure with key factors that can contribute to someone needing more support. This measure was developed with input from experts in caregiving and bereavement care, as well as critical feedback from people who were actively caregiving for a loved one with cancer or who were bereaved. The current study is the next step to making this tool into something that can be distributed to and used in hospitals and clinics. We want to better understand various caregiving and bereavement experiences and how the measure might best be used to improve grief support services.
How can you help?
Contributing to this effort to improve care involves completing a 30-minute online survey at up to three time points. The survey asks questions about your background, areas of emotional support needs and experiences, experiences with your family member or close friend’s life-limiting illness — or if you are bereaved, bereavement experiences. Ultimately, we hope that by learning more about a variety of caregiving and bereavement experiences, we can create a tool that can be used in a variety of medical and community care settings in order to better serve those who are grieving.
If you are interested in learning more and would like to find out if you are eligible, please complete this brief screener found on our lab website.