Understanding Cancer Survivors’ Needs and Experiences Returning to Work Post-Treatment: A Longitudinal Qualitative Study
Abstract
:1. Introduction
2. Materials and Methods
2.1. Study Design
2.2. Participant Recruitment
2.3. Interviews
2.4. Analysis
3. Results
3.1. Supports Received or Desired to Enable RTW
“They think I’m crazy. They think I should, ahh, be relaxing and trying to get my strength back…They’re fine with me going back a little bit, but they think that I’ve gone back too much. Like that I’m doing too much now.”(P8)
“In the beginning, he (supervisor) told me, you know, ‘Listen, you want to stop? Take a break. Go outside. Take some fresh air.’ Because, he could see sometimes in my face that, ahh, I wasn’t really feeling so good. That was early beginning when I was doing my first two-hour shift.”(P4)
“The only person I really see on the cancer team is my doctor and a nurse and nobody had explained to me that that’s kind of how it works. Maybe because they didn’t know or anything like that. So, I don’t feel like I’ve gotten a lot of support from them. I’ve had to do the work myself and granted I can recognize that they’re probably pretty busy, umm, but still.”(P2)
“I hadn’t talked to the cancer team. I had talked to my family doctor and, ahh he, you know, we discussed it and I said, ‘you know what? I’ll go back and try it and if I find it’s too much for me well, you know, it will be too much.’ He was a great supporter and felt that, you know, like I could do it because I seemed to be okay.”(P6)
“I feel like my family doctor is also putting pressure. Like, he doesn’t really fully understand brain fog and fatigue and, you know, just the way he deals with what I say, he just, he doesn’t understand that these are such serious side effects of cancer and he tells me that they are just short-term and if I go back to work, and once I get back in the routine of things, I’ll be fine.”(P1)
“I think it would be helpful if there was someone that people could, you know, like specifically that people could go talk to about transitioning out of, you know, being under full-time care all of the time and doctors every day to, you know, just being back in limbo and it’s hard to put it out of your head that, you know, now it’s just a wait and see game.”(P8)
3.2. Others’ Limited Understanding of the Long-Term Impacts of a Cancer Diagnosis and Its Treatment
“You can’t really explain it to people because it doesn’t, ahh, they just go, ‘oh, I understand.’ But they don’t. You don’t really understand that your brain just doesn’t work the same anymore. It doesn’t do what it did before. It’s very, it’s like having a stutter in your brain. And, ahh, just very tiring and you know. And, when I say, ‘oh I’m tired’ at the end of the day everybody just says, ‘oh well maybe you shouldn’t be doing so much’ and it’s like well, who is going to pay the bills if I don’t, you know, do it.”(P8)
“So, I think as a society, there’s this assumption that say, you know, I’ve finished chemotherapy and now I’m healthy and I’m ready to go back to work. I think there’s not … There needs to be this understanding that once you get diagnosed with cancer you are dealing with your health for the rest of your life and that becomes your priority. And it’s not possible for everyone to go back to full-time work. For some people it could take years. Some people never get to go back.”(P1)
“I just feel it was too much, because, you know, I wish I had that opportunity to stay home and go back later, but the type of job, it was no job security and if you weren’t there somebody else would have been hired. So, I sort of, you know, pushed myself to go, but now if ever I give anybody advice it’s make sure your treatment’s over and you’re mentally and physically ready to go back. That would be my thing.”(P6)
“I think it would be nice if people understood that even though you look okay, what’s going on in your brain isn’t always okay because you’re dealing with a lot of umm unknowns and if people … I find that people have assumed because my hair is growing back and I have eyebrows that I look so healthy and then they don’t know what’s going on with your emotional state.”(P7)
3.3. Worries and Self-Doubts about Returning to Work
“I consented to treatment of, ahh, like long-term damage to healthy brain tissue because they radiate not only the abnormal cells within the margins, but ahh it affects the sort of healthy brain tissue cells. So, one of my concerns is, ahh is umm, how does that affect work performance in the long-term? What sort of work, ahh, will I be able to do umm 10 or 20 years from now? When they talk about cognitive deficits like how does that, how does that actually manifest itself? What does that mean? What does that look like umm in like a 9 to 5 sort of regular work day context?”(P3)
“Like, I don’t want to go back to work unless my mental health is good enough to and so, I just feel like those are things that no one really understands and I kind of just need to defend myself all the time. It’s almost like I’m almost fighting to like tell people I’m not well enough to go back to work and that then affects my self-esteem, because I feel like I should be well enough but I’m not.”(P1)
“I know for me, like being home, after like working all the time. Like, not having a sense of meaning kind of in my life a little bit that I got from work before. Umm that was like, I think a big challenge and like so much of my identity was tied up in my work. Umm and like my profession, my relationship with my colleagues and all that kind of stuff, and so, when you take that away umm like it makes me question like, who are you? Like, what is your identity? … I think that our society and our culture values work so much in helping establish who we are as an individual and our relationship with other people that umm when you don’t have work, what do you have to replace that? … having to help rebuild that sense of self and identity again, I guess, is like a struggle.”(P2)
3.4. Changing Perspectives on Life and Work after Cancer
“I just want to do something that I find some enjoyment in and I sort of feel the need to help at this point, to do something. So many people have helped me I kind of want to, I know it’s sound cliché, but I feel like I want to just sort of give back for everyone who has helped me.”(P14)
“The diagnosis of a brain tumor is a life changing umm event … when it happens, it kind of shatters your illusions of umm sort of what you are doing. You are faced with your own mortality. Umm yes, I think people are, they are cognizant of it every day. It’s just umm they take it for granted, the fact that you are alive and healthy and you don’t really umm you don’t really clue in to the fact that your days are numbered and that you are a mortal … For me, it’s more umm especially with the radiation therapy. I don’t know what effect that will have in umm the long-term.”(P3)
4. Discussion
5. Conclusions
Supplementary Materials
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
References
- Canadian Cancer Society. Canadian Cancer Statistics 2019; Canadian Cancer Society: Toronto, ON, Canada, 2019. [Google Scholar]
- Islam, T.; Dahlui, M.; Majid, H.A.; Nahar, A.M.; Mohd Taib, N.A.; Su, T.T. MyBCC study group. Factors associated with return to work of breast cancer survivors: A systematic review. BMC Public Health 2014, 14 (Suppl. S3), S8. [Google Scholar] [CrossRef] [PubMed] [Green Version]
- Wells, M.; Williams, B.; Firnigl, D.; Lang, H.; Coyle, J.; Kroll, T.; MacGillivray, S. Supporting ‘work-related goals’ rather than ‘return to work’ after cancer? A systematic review and meta-synthesis of 25 qualitative studies. Psychooncology 2013, 22, 1208–1219. [Google Scholar] [CrossRef] [PubMed]
- Butow, P.; Laidsaar-Powell, R.; Konings, S.; Lim, C.Y.S.; Koczwara, B. Return to work after a cancer diagnosis: A meta-review of reviews and a meta-synthesis of recent qualitative studies. J. Cancer Surviv. 2020, 14, 114–134. [Google Scholar] [CrossRef] [PubMed]
- Parsons, J.A.; Eakin, J.M.; Bell, R.S.; Franche, R.L.; Davis, A.M. “So, are you back to work yet?” Re-conceptualizing ‘work’ and ‘return to work’ in the context of primary bone cancer. Soc. Sci. Med. 2008, 67, 1826–1836. [Google Scholar] [CrossRef] [PubMed]
- Morrison, T.L.; Thomas, R.L. Survivors’ experiences of return to work following cancer: A photovoice study. Can. J. Occup. Ther. Rev. Can. Ergother. 2014, 81, 163–172. [Google Scholar] [CrossRef] [PubMed]
- Yagil, D.; Eshed-Lavi, N.; Carel, R.; Cohen, M. Return to Work of Cancer Survivors: Predicting Healthcare Professionals’ Assumed Role Responsibility. J. Occup. Rehabil. 2019, 29, 443–450. [Google Scholar] [CrossRef]
- Ekwueme, D.U.; Yabroff, K.R.; Guy, G.P.; Banegas, M.P.; de Moor, J.S.; Li, C.; Xuesong, H.; Zheng, Z.; Soni, A.; Davidoff, A.; et al. Medical costs and productivity losses of cancer survivors--United States, 2008–2011. MMWR Morb. Mortal. Wkly. Rep. 2014, 63, 505–510. [Google Scholar] [PubMed]
- Guy, G.P.; Ekwueme, D.U.; Yabroff, K.R.; Dowling, E.C.; Li, C.; Rodriguez, J.L.; de Moor, J.S.; Virgo, K.S. Economic Burden of Cancer Survivorship Among Adults in the United States. J. Clin. Oncol. 2013, 31, 3749–3757. [Google Scholar] [CrossRef] [PubMed] [Green Version]
- Luengo-Fernandez, R.; Leal, J.; Gray, A.; Sullivan, R. Economic burden of cancer across the European Union: A population-based cost analysis. Lancet Oncol. 2013, 14, 1165–1174. [Google Scholar] [CrossRef]
- de Boer, A.G.E.M.; Taskila, T.; Ojajärvi, A.; van Dijk, F.J.H.; Verbeek, J.H.A.M. Cancer Survivors and Unemployment: A Meta-analysis and Meta-regression. JAMA 2009, 301, 753–762. [Google Scholar] [CrossRef]
- Hansen, J.A.; Feuerstein, M.; Calvio, L.C.; Olsen, C.H. Breast cancer survivors at work. J. Occup. Environ. Med. 2008, 50, 777–784. [Google Scholar] [CrossRef]
- Bradley, C.J.; Bednarek, H.L.; Neumark, D. Breast cancer survival, work, and earnings. J. Health Econ. 2002, 21, 757–779. [Google Scholar] [CrossRef] [Green Version]
- Lavigne, J.E.; Griggs, J.J.; Tu, X.M.; Lerner, D.J. Hot flashes, fatigue, treatment exposures and work productivity in breast cancer survivors. J. Cancer Surviv. 2008, 2, 296–302. [Google Scholar] [CrossRef]
- Hauglann, B.; Benth, J.S.; Fosså, S.D.; Tveit, K.M.; Dahl, A.A. A controlled cohort study of long-term income in colorectal cancer patients. Support. Care Cancer 2014, 22, 2821–2830. [Google Scholar] [CrossRef] [PubMed]
- Maunsell, E.; Drolet, M.; Brisson, J.; Brisson, C.; Mâsse, B.; Deschênes, L. Work situation after breast cancer: Results from a population-based study. J. Natl. Cancer Inst. 2004, 96, 1813–1822. [Google Scholar] [CrossRef] [PubMed] [Green Version]
- Syse, A.; Tretli, S.; Kravdal, Ø. Cancer’s impact on employment and earnings—A population-based study from Norway. J. Cancer Surviv. 2008, 2, 149–158. [Google Scholar] [CrossRef] [Green Version]
- Feuerstein, M.; Hansen, J.A.; Calvio, L.C.; Johnson, L.; Ronquillo, J.G. Work productivity in brain tumor survivors. J. Occup. Environ. Med. 2007, 49, 803–811. [Google Scholar] [CrossRef] [PubMed]
- Dorland, H.F.; Abma, F.I.; Roelen, C.A.M.; Stewart, R.E.; Amick, B.C.; Bültmann, U.; Ranchor, A.V. Work-specific cognitive symptoms and the role of work characteristics, fatigue, and depressive symptoms in cancer patients during 18 months post return to work. Psychooncology 2018, 27, 2229–2236. [Google Scholar] [CrossRef] [PubMed]
- Dorland, H.F.; Abma, F.I.; Van Zon, S.K.R.; Stewart, R.E.; Amick, B.C.; Ranchor, A.V.; Roelen, C.A.M.; Bültmann, U. Fatigue and depressive symptoms improve but remain negatively related to work functioning over 18 months after return to work in cancer patients. J. Cancer Surviv. 2018, 12, 371–378. [Google Scholar] [CrossRef] [Green Version]
- van Maarschalkerweerd, P.E.A.; Schaapveld, M.; Paalman, C.H.; Aaronson, N.K.; Duijts, S.F.A. Changes in employment status, barriers to, and facilitators of (return to) work in breast cancer survivors 5–10 years after diagnosis. Disabil. Rehabil. 2020, 42, 3052–3058. [Google Scholar] [CrossRef] [Green Version]
- Yagil, D.; Goldblatt, H.; Cohen, M. Dyadic resources in the return to work of cancer survivors: Exploring supervisor–employee perspectives. Disabil. Rehabil. 2019, 41, 2151–2158. [Google Scholar] [CrossRef]
- van der Lee, M.; Ranchor, A.V.; Garssen, B.; Sanderman, R.; Schroevers, M.J.; Roelen, C. Predictors of Returning to Work after Receiving Specialized Psycho-Oncological Care. Health Psychol. Bull. 2020, 4, 1–9. [Google Scholar] [CrossRef] [Green Version]
- Porro, B.; Michel, A.; Zinzindohoué, C.; Bertrand, P.; Monrigal, E.; Trentini, F.; Baussard, L.; Cousson-Gelie, F. Quality of life, fatigue and changes therein as predictors of return to work during breast cancer treatment. Scand. J. Caring Sci. 2019, 33, 467–477. [Google Scholar] [CrossRef]
- Tiedtke, C.; De Rijk, A.; Van den Broeck, A.; Godderis, L. Employers’ Experience on Involvement in Sickness Absence/Return to Work Support for Employees with Cancer in Small Enterprises. J. Occup. Rehabil. 2020, 30, 635–645. [Google Scholar] [CrossRef] [PubMed]
- Groeneveld, I.F.; de Boer, A.G.E.M.; Frings-Dresen, M.H.W. Physical exercise and return to work: Cancer survivors’ experiences. J. Cancer Surviv. 2013, 7, 237–246. [Google Scholar] [CrossRef] [PubMed]
- Bae, K.R.; Cho, J. Changes after cancer diagnosis and return to work: Experience of Korean cancer patients. BMC Cancer 2021, 21, 86. [Google Scholar] [CrossRef]
- Tamminga, S.J.; de Boer, A.G.; Verbeek, J.H.; Taskila, T.; Frings-Dresen, M.H. Enhancing return-to-work in cancer patients, development of an intervention and design of a randomised controlled trial. BMC Cancer 2010, 10, 345. [Google Scholar] [CrossRef] [Green Version]
- de Boer, A.G.E.M.; Taskila, T.K.; Tamminga, S.J.; Feuerstein, M.; Frings-Dresen, M.H.W.; Verbeek, J.H. Interventions to enhance return-to-work for cancer patients. Cochrane Database Syst. Rev. 2015, 9, CD007569. [Google Scholar] [CrossRef] [PubMed]
- Bentz, V.; Shapiro, J. Mindful Inquiry in Social Research; Sage Publications: Thousand Oaks, CA, USA, 1998. [Google Scholar]
- Calman, L.; Brunton, L.; Molassiotis, A. Developing longitudinal qualitative designs: Lessons learned and recommendations for health services research. BMC Med. Res. Methodol. 2013, 13, 14. [Google Scholar] [CrossRef] [PubMed]
- Hermanowicz, J.C. The Longitudinal Qualitative Interview. Qual. Sociol. 2013, 36, 189–208. [Google Scholar] [CrossRef]
- Feuerstein, M.; Todd, B.L.; Moskowitz, M.C.; Bruns, G.L.; Stoler, M.R.; Nassif, T.; Yu, X. Work in cancer survivors: A model for practice and research. J. Cancer Surviv. 2010, 4, 415–437. [Google Scholar] [CrossRef] [PubMed]
- Patton, M.Q. Qualitative Research and Evaluation Methods; Sage Publications: Thousand Oaks, CA, USA, 2002. [Google Scholar]
- Rubin, H.J.; Rubin, I. Qualitative Interviewing: The Art of Hearing Data; Sage Publications: Thousand Oaks, CA, USA, 1995. [Google Scholar]
- Strauss, A.L.; Corbin, J.M. Basics of Qualitative Research: Grounded Theory Procedures and Techniques; Sage Publications: Thousand Oaks, CA, USA, 1990. [Google Scholar]
- Neale, B.; Flowerdew, J. Time, texture and childhood: The contours of longitudinal qualitative research. Int. J. Soc. Res. Methodol. 2003, 6, 189–199. [Google Scholar] [CrossRef]
- Tiedtke, C.; Donceel, P.; de Rijk, A.; Dierckx de Casterlé, B. Return to Work Following Breast Cancer Treatment: The Employers’ Side. J. Occup. Rehabil. 2014, 24, 399–409. [Google Scholar] [CrossRef] [PubMed]
- Eguchi, H.; Wada, K.; Higuchi, Y.; Smith, D.R. Co-worker perceptions of return-to-work opportunities for Japanese cancer survivors. Psychooncology 2017, 26, 309–315. [Google Scholar] [CrossRef] [PubMed]
- Kiasuwa Mbengi, R.; Otter, R.; Mortelmans, K.; Arbyn, M.; Van Oyen, H.; Bouland, C.; de Brouwer, C. Barriers and opportunities for return-to-work of cancer survivors: Time for action—rapid review and expert consultation. Syst. Rev. 2016, 5, 35. [Google Scholar] [CrossRef] [PubMed] [Green Version]
- Yang, S.; Jeong, B. Gender Differences in Wage, Social Support, and Job Satisfaction of Public Sector Employees. Sustainability 2020, 12, 8514. [Google Scholar] [CrossRef]
- Hauret, L.; Williams, D.R. Cross-National Analysis of Gender Differences in Job Satisfaction. Ind. Relat. A J. Econ. Soc. 2017, 56, 203–235. [Google Scholar] [CrossRef]
Characteristic | n | % |
---|---|---|
Age | ||
≤40 | 5 | 38.5 |
40+ | 8 | 61.5 |
Gender | ||
Man | 3 | 23.1 |
Woman | 10 | 76.9 |
Non-binary | 0 | 0.0 |
Marital Status | ||
Partnered | 8 | 61.5 |
Single | 5 | 38.5 |
Children or Dependents | ||
Yes | 7 | 53.8 |
No | 6 | 46.2 |
Place of Residence | ||
Rural | 3 | 23.1 |
Urban | 9 | 69.2 |
No Answer | 1 | 7.7 |
Job Category | ||
Business, Management, & Administration | 4 | 30.8 |
Engineering, Manufacturing, & Technology | 2 | 15.4 |
Health Science Technology | 4 | 30.8 |
Human Services | 3 | 23.1 |
Pre-Diagnosis Work Hours | ||
Part Time | 3 | 23.1 |
Full Time | 10 | 76.9 |
Cancer Type | ||
Blood | 2 | 15.4 |
Brain | 1 | 7.7 |
Head and Neck | 2 | 15.4 |
Breast | 5 | 38.5 |
Ovarian | 2 | 15.4 |
Abdominal | 1 | 7.7 |
Cancer Treatment * | ||
Chemotherapy | 10 | 76.9 |
Surgery | 10 | 76.9 |
Radiation | 7 | 53.8 |
Hormone Therapy | 3 | 23.1 |
Stem Cell Transplant | 1 | 7.7 |
Returned to Work ** | ||
Yes | 11 | 84.6 |
No | 2 | 15.4 |
Interview | T1: End of Treatment | T2: 3 Months Post-Treatment | T3: 9 Months Post-Treatment * |
---|---|---|---|
Study objective | Explore needs related to return to work (RTW) | Explore ongoing needs and how these change over time Explore experiences reintegrating back to work Identify what helps and hinders the RTW process | |
Key findings | Needs at the end of treatment include information about RTW, navigating the RTW process, formal psychosocial support, and employee accommodation | Ongoing needs include formal psychosocial supports and employee accommodation Prevalent ongoing late effects include mental health issues, fatigue, pain, neuropathy, and cognitive impairment High levels of emotional and practical support upon initial return to work, which decline over time A limited understanding by others (family, friends, employers, co-workers, and/or members of healthcare team) of the ongoing late effects and the impacts on work Worries and self-doubt can surface due to unforeseen challenges returning to work, including an inability to work at pre-cancer levels Key enablers to RTW can include RTW navigation, peer supports, formal psychosocial services, and direct support from employers such as increased communication and flexibility Many people develop new perspectives on life and work after a cancer diagnosis and treatment |
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Urquhart, R.; Scruton, S.; Kendell, C. Understanding Cancer Survivors’ Needs and Experiences Returning to Work Post-Treatment: A Longitudinal Qualitative Study. Curr. Oncol. 2022, 29, 3013-3025. https://doi.org/10.3390/curroncol29050245
Urquhart R, Scruton S, Kendell C. Understanding Cancer Survivors’ Needs and Experiences Returning to Work Post-Treatment: A Longitudinal Qualitative Study. Current Oncology. 2022; 29(5):3013-3025. https://doi.org/10.3390/curroncol29050245
Chicago/Turabian StyleUrquhart, Robin, Sarah Scruton, and Cynthia Kendell. 2022. "Understanding Cancer Survivors’ Needs and Experiences Returning to Work Post-Treatment: A Longitudinal Qualitative Study" Current Oncology 29, no. 5: 3013-3025. https://doi.org/10.3390/curroncol29050245
APA StyleUrquhart, R., Scruton, S., & Kendell, C. (2022). Understanding Cancer Survivors’ Needs and Experiences Returning to Work Post-Treatment: A Longitudinal Qualitative Study. Current Oncology, 29(5), 3013-3025. https://doi.org/10.3390/curroncol29050245