Project Description
This doctoral capstone project explored the distinct value of an occupation-based model of supportive care for cancer survivors. Although there is extensive research on cancer and access to supportive care, this capstone project will serve as the foundation for educating referral sources and other healthcare practitioners on occupational therapy’s scope of practice and unique client-centered approach to patient care with cancer survivors. Throughout the experience, cancer survivors’ primary needs were assessed to understand how occupational therapists can better address the physical and psychosocial implications of a cancer diagnosis and subsequent cancer-related treatments.
Primary Site
Cancer Bridges - Pittsburgh, PA
Cancer Bridges offers cancer survivors and their families support services at no cost.
Area of Focus
Program & Policy Development | Advocacy | Research
Area of Practice
Mental Health | Cancer Rehabilitation
Target Population
Stage 4 Metastatic Cancer Survivors
Learning Agreement
Understanding the Need of Occupational Therapy in Supportive Care Settings
Prior to the completion of the 14-week Doctoral Capstone Experience (DCE), I completed an in-depth review of evidence-based literature, interviewed key stakeholders in oncology and cancer rehabilitation, and received extensive training as an end-of-life doula. Following a review of these resources, the role of occupational therapy in supportive care for cancer survivors was examined through the creation of a needs assessment and literature review.
Needs Assessment
According to the National Cancer Institute (2020), by 2040 the number of cancer survivors within the United States will exceed 29.5 million, with an increased mortality of 16.4 million. Current research demonstrates that cancer survivors report unmet needs throughout the cancer survivorship continuum which has led to a higher incidence of psychological distress impacting overall well-being, health and wellness, and personal relationships (Miller and Mohammed, 2020). Furthermore, the need for occupational therapists in supportive care settings has been explored to assist cancer survivors in engaging in meaningful occupations when entering the final stages of their life (AOTA, 2011). However, due to a decreased understanding on the scope of occupational therapy, a lack of resources on interventions for cancer survivors, and a limited number of occupational therapists in supportive care settings the needs of cancer survivors continue to be unmet leading to decreased quality of life and life satisfaction.
Literature Review
A cancer diagnosis creates significant physical and psychosocial challenges that impact an individual's participation and engagement in meaningful life activities (Quinto et al., 2022). Current research demonstrates that cancer survivors may struggle with accepting their disease and ultimately question their disease occurrence (Quinto et al., 2022). Occupational therapy can help to address these feelings and concerns by engaging clients in structured life reflection and discussion of their journey which will ultimately assist survivors in understanding their diagnosis, emotions, and overall significance (Griffith & Gaby, 2005). During this period of reflection, occupational therapists can further address limitations that may be impacting their client’s ability to engage in meaningful occupations by offering modifications and adaptations to activities of daily living (American Occupational Therapy Association, 2011; Laing et al., 2019; Sleight & Duker, 2016).
However, although nearly 50% of individuals with a previous history or current diagnosis of cancer report physical and psychological limitations, many survivors do not receive a referral to rehabilitation services as a result of decreased knowledge on the scope and role of occupational therapy on a supportive care interdisciplinary team (Lammersfeld, 2020; Stout et al., 2019; Thorsen et al., 2011). Therefore, with the deliverables created as part of this doctoral capstone experience, referral sources, community members, and healthcare professionals will be educated on the role of occupational therapy in cancer care while setting the foundation for occupational therapists in supportive care settings.
Mission Statement
To establish the distinct value of occupational therapy's role within oncology while addressing the physical and psychosocial implications faced by cancer survivors and their families through life reflections and intimate support group designs.
Vision Statement
A community-foundation where occupational therapy practitioners are instrumental components of supportive care for cancer survivors and their families.
Support Group Overview
January 29, 2024 - March 18, 2024
This support group series was created in partnership with Cancer Bridges to understand the impact of journaling on quality of life and life satisfaction among cancer survivors while also examining the role of occupational therapy in initiating life reflection through expressive writing. The Assessment of Quality of Life - 8 Dimension questionnaire was used to measure survivor's quality of life pre-and post-program completion.
Program Analysis & Future Implications
The following is an overview of my support group demographics, comparison of pre and post quality of life scores, as well as future directions of Living Life in Review.
"I found it beneficial to look at my 23 years of survivorship through a more "total picture" vantage point. I have had so many hills & valleys that is was rewarding to look back and summarize all that I have made it through. It really helped to shape my thoughts in a comprehensive and enlightening way.
Even though I have been NED since May 2017, my health since then has continued on the same roller coaster with Lyme's twice, Covid, gall bladder & hip surgery. The first year that I have not had a major illness was 2023 and even then I found myself struggling with simple routines & dealing with long term side effects.
In all my prior remissions, I focused as hard as I could to get prepared for the next recurrence. This time I have felt overwhelmed by health/life in general and was finding it more difficult to regain my footing. I just kept getting knocked back down again.
Between the time spent with Adelyn, the group and journaling, this series has made an impressive impact on my attitude. Now, I finally feel that I am regaining an understanding & acceptance of my circumstances. I am easier on myself, but at the same time able to accomplish more by relieving some of the pressure. A lot of my issues were mental as much as they were physical. I feel like in some ways Adelyn has put me back together and set me up for another reboot. Adelyn helped bring Spring early this year!" ~ Written by a 23 year ovarian cancer survivor
Project Outcomes
Over the course of 14-weeks, a total of five deliverables were completed as outlined below. Along with these 5 deliverables, a number of artifacts were also completed.
Deliverable #4: General Metastatic Cancer Support Group Reflections
Over the course of 14-weeks, I attended three General Metastatic Cancer support groups through Cancer Bridges. Following group discussions, I completed personal reflections to further understand the concerns and lived experiences of Stage 4 Metastatic cancer survivors.
Deliverable #5: Cancer Rehabilitation Foundational Badge from The American Occupational Therapy Association
Future Directions
Through the completion of my DCE, I have not only enhanced my clinical skills as a practitioner, but I have also gained a greater understanding of the role of occupational therapy in both supportive care and oncology rehabilitation settings. Using the knowledge I have gained, I plan to continue advocating for the role of occupational therapy in supportive care settings for cancer survivors through the resources I have created and further highlighting the lived experiences of Stage 4 Metastatic Cancer survivors.
Contact Information
(P) 304-919-5241 | (E) postiadelyn@gmail.com
The following letter was written by a participant during week 7 of Living Life in Review as part of a structured journal prompt on coping. This letter allows for an inside look into the lived experiences of a long-term cancer survivor from childhood through adulthood.
Dear Cancer
"You disrupted my childhood and altered my trust in my own health and the judgement of many of my medical teams and even my support team. You robbed me of so many things - sleepovers, sports, family vacations. Instead, you gave me anxiety, depression, PTSD, trauma, and living in a constant fight or flight mode.
You caused my sibilings to resent me for getting all of the attention. Because of you, my mother reminded me often how they nearly went broke because the insurnace kicked me off at 9. She didn't hesitate telling me that it was my fault that we couldn't go on family vacations or buy a big ticket item. But it wasn't my fault. No, it was and is your fault.
When I was told I would likely never have children because you went from childhood lung cancer to brain cancer, I had to listen to my first husband tell me how unfair it was for him and his family name would die because of me. I couldn't grieve or process any of this because I was literally fighting for my life.
And when I did get pregnant, my motherhood was interrupted by more cancer. All the miscarriages were deemed my fault, by everyone - myself included - but I couldn't grieve because I was alone and in shock. I still couldn't process or grieve when I was given a bleak prognosis because of you, and yet my first husband had to let me know he would remarry within months for fear of being alone and with a baby. You, Cancer, gave him the excuse he wanted and needed to leave me for another woman - one who didn't have you in her life.
I lost many friends and family members to the ghosting that seems to come with having you in my life. Beacause you have allowed me to not look like a stereotypical cancer patient, so many people have refused to believe my illness and have treated me unfairly. You convinced people to tell me repeatedly throughout my entire life that you're "the good cancer." And the worst part is that I believed them. You are the very definition of positive toxicity.
I can't sleep because I know you're lurking in the shadows. I can't enjoy happiness because you give me subtle reminders that you're there. You're a perpetual stalker just waiting until you catch me unaware and unsuspecting just to cut me down.
I wish I had never met you, Cancer. You are a destroyer of dream. Of love. And of life. So kindly eff right off.
Sincerely, Not Your Friend"
References
American Occupational Therapy Association. (2011). The role of occupational therapy in end-of-life care. The American Journal of Occupational Therapy, 65(6), 66–75. https://doi.org/10.5014/ajot.2011.65S66
Griffith, L. J., & Gaby, L. (2005). Brief Psychotherapy at the bedside: Countering demoralization from medical illness. Psychosomatics, 46(2), 109–116. https://doi.org/10.1176/appi.psy.46.2.109
Laing, M. C., Moules, J. N., Sinclair, S., & Estefan, A. (2019). Digital storytelling as a psychosocial tool for adult cancer survivors. Oncology Nursing Forum, 46(2), 147-154. https://doi.org/10.1188/19.ONF.147-154
Lammersfeld, C. (2020). Cancer supportive care improves quality of life and symptom management. City of Hope. https://www.cancercenter.com/community/blog/2020/12/cancer-supportive-care
Miller, E., & Mohammed, A. (2020). Addressing the mental health of individuals who have survived cancer. American Occupational Therapy Association. https://www.aota.org/-/media/Corporate/Files/Publications/CE-Articles/CEA_June_2020.pdf
National Cancer Institute. (2020). Cancer statistics. https://www.cancer.gov/about-cancer/understanding/statistics
Quinto, M. R., De Vincenzo, F., Campitiello, L., Innamorati, M., Secinti, E., & Iani, L. (2022). Meaning in life and the acceptance of cancer: A systematic review. International Journal of Environmental Research and Public Health, 19(9), 5547. https://doi.org/10.3390/ijerph19095547
Sleight, G. A., & Duker, I. L. (2016). Toward a broader role for occupational therapy in supportive oncology care. The American Journal of Occupational Therapy, 70(4), 1–8. https://doi.org/10.5014/ajot.2016.018101
Stout, L. N., Silver, K., J., Alfano, M. C., Ness, K. K., & Gilchrist, S. L. (2019). Long-term survivorship care after cancer treatment: A new emphasis on the role of rehabilitation services. Physical Therapy, 99(1), 10-13. https://doi.org/10.1093/ptj/pzy115
Thorsen, L., Gjerset, M. G., Loge, H. J., Kiserud, E. C., Skovlund, E., Fløtten, T., & Fosså, D. S. (2011). Cancer patients’ needs for rehabilitation services. Acta oncologica, 50(2), 212-222. https://doi.org/10.3109/0284186X.2010.531050