“What We Want Is More Access…”: Experiences of Supportive Cancer Care and Strategies for Advancement in a Canadian Provincial Cancer Care Organization
Abstract
:1. Background
2. Methods
2.1. Study Participants
2.2. Setting
2.3. Data Collection
2.4. Data Analysis
3. Results
3.1. Improving Patient and Provider Awareness of Services
nothing was really offered to me… and I found this giant book that had 80 some odd pages about returning to work. Well, nobody had given it to me. My oncologist hadn’t given it to me. My counsellor hadn’t, and (when) I mentioned it, she says, ‘Oh, I was meaning to give that to you’…
3.2. Increasing Access
3.3. Making Attendance Accessible for All
3.4. Encouraging Rather Than Discouraging Access to Supportive Care
3.5. Enhancing Coordination and Integration
4. Discussion
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Conflicts of Interest
References
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Topic Area | Questions/Probes |
---|---|
Managing physical symptoms and side effects related to your cancer and treatment | This refers to the physical feelings that you had or have related to your experience with cancer. It can include things like pain, nausea, dry mouth, or trouble with eating and physical activity. Let’s share as a group. What are some of the physical feelings that you had during your cancer treatment? How did you cope with the physical feelings? What services did you access to help you manage these physical feelings? What are some areas where you hoped to have more support? Does anyone have anything further to add? |
Emotional, social, and spiritual support | This theme refers to a lot of different things. For example, the emotional feelings that you had or have related to your experience with cancer, the relationships with your family and friends, and questions that you had about the meaning of life. Let’s share as a group. What are some of the emotional, social and spiritual experiences that you had during your cancer treatment? How did you cope with these experiences and feelings? What services did you access to help you manage these emotional, social and spiritual experiences? What are some areas where you hoped to have more support? Does anyone have anything further to add? |
Practical support | This refers to your practical needs such as financial struggles, travel and transportation for appointments, child care or caregiving that you had or have related to your experience with cancer. Let’s share as a group. What are some of the practical challenges that you had during your cancer treatment? How did you cope with these practical challenges? What services did you access to help you manage these practical challenges? What are some areas where you hoped to have more support? Does anyone have anything further to add? |
Characteristic | Participant Has Cancer or Had Cancer (n = 57) | Participant Supported or Cared for Someone with Cancer (n = 11 *) |
---|---|---|
Women—no. (%) | 36 (63.2) | 7 (70.0) |
Age—mean yrs (SD) | 62.3 (10.7) | 64.9 (9.7) |
Marital Status—no. (%) | ||
Single | 6 (10.5) | 0 |
Married or Partnered | 39 (68.4) | 9 (90.0) |
Separated or Divorced | 9 (15.8) | 1 (10.0) |
Widowed | 3 (5.3) | 0 |
Number in Household (Including Participant Responding)—no. (%) | ||
Live Alone | 16 (28.1) | 2 (20.0) |
2 People | 28 (49.1) | 7 (70.0) |
3 or More People | 14 (22.8) | 1 (10.0) |
Birthplace—no. (%) | ||
Canada | 35 (64.8) | 6 (85.7) |
Other, have lived in Canada for less than 5 years | 0 | 1 (14.3) |
Other, have lived in Canada for 5 to 10 years | 1 (1.9) | 0 |
Other, have lived in Canada for more than 10 years | 17 (31.5) | 0 |
Prefer not to answer | 1 (1.9) | 0 |
Highest Education Level—no. (%) | ||
Grade school or less | 1 (1.9) | 0 |
High school ** | 8 (14.8) | 0 |
College or technical school/CEGEP ** | 19 (35.2) | 3 (42.9) |
University education (undergraduate or graduate) ** | 25 (46.3) | 4 (57.1) |
Prefer not to answer | 1 (1.9) | 0 |
Rural or Urban Living Status—no. (%) | 0 | |
Rural | 3 (5.9) | 0 |
Town (less than 10,000 people) | 11 (21.6) | 4 (57.1) |
City (10,000 or more) | 37 (72.5) | 3 (42.9) |
Employment Status—no. (%) | ||
Full-time or part-time work | 4 (6.6) | 1 (14.3) |
Paid sick leave/disability leave | 18 (29.5) | 0 |
Homemaker/stay-at-home parent | 3 (4.9) | 0 |
Full-time student | 1 (1.6) | 0 |
Retired | 29 (47.5) | 4 (57.1) |
Unemployed | 5 (8.2) | 2 (28.6) |
Prefer not to answer | 1 (1.6) | 0 |
Total Household Income—no. (%) | ||
Less than $25,000 | 9 (18.4) | 2 (28.6) |
$25,000 to less than $75,000 | 10 (20.4) | 2 (28.6) |
$75,000 or more | 16 (32.7) | 2 (28.6) |
Prefer not to answer | 14 (28.6) | 1 (14.3) |
Cancer Type of Participant or Patient Cared For—no. (%) | ||
Bladder | 1 (1.5) | 1 (9.1) |
Blood cancer/haematological | 5 (7.6) | 0 |
Brain/Central nervous system | 0 | 1 (9.1) |
Breast | 15 (22.7) | 1 (9.1) |
Colorectal (colon or rectal) | 10 (15.2) | 0 |
Gynaecological (cervical, ovarian, uterine, or fallopian tube) | 7 (10.6) | 0 |
Melanoma skin cancer (not basal cell carcinoma or squamous cell carcinoma) | 3 (4.6) | 1 (9.1) |
Prostate | 8 (12.1) | 2 (18.2) |
Sarcoma | 0 | 1 (9.1) |
Stomach or esophagus | 0 | 1 (9.1) |
Other cancer type | 17 (25.8) | 3 (27.3) |
Treatment Type of Participant or Patient Cared For—no. (%) | ||
Surgery | 39 (29.8) | 5 (33.3) |
Chemotherapy (intravenous or oral) | 40 (30.5) | 3 (20.0) |
Immunotherapy/biologic therapy | 4 (3.1) | 1 (6.7) |
Hormone therapy | 13 (9.9) | 1 (6.7) |
Radiation therapy | 23 (17.6) | 3 (20.0) |
Bone marrow or stem cell transplant | 1 (0.8) | 0 |
Alternative medicine | 8 (6.1) | 2 (13.3) |
No cancer treatment but close monitoring in case treatment is needed | 3 (2.3) | 0 |
Time Elapsed Between Primary Cancer Diagnosis and Focus Group—no. (%) | ||
Less than 1 year | 2 (4.1) | N/A |
1–2 years | 24 (49.0) | N/A |
3–5 years | 12 (24.5) | N/A |
Greater than 5 years | 11 (22.4) | N/A |
Chronic Conditions (Before Cancer Diagnosis)—no. (%) | ||
Arthritis, osteoarthritis, or other rheumatic disease | 13 (15.7) | N/A |
Cardiovascular or heart condition; hypertension or high blood pressure | 17 (20.5) | N/A |
Chronic kidney disease | 2 (2.4) | N/A |
Diabetes | 2 (2.4) | N/A |
Osteoporosis | 1 (1.2) | N/A |
Respiratory diseases | 5 (6.0) | N/A |
Mental health issues | 12 (14.5) | N/A |
No chronic conditions | 17 (20.5) | N/A |
Other chronic condition(s) | 14 (16.9) | N/A |
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Avery, J.; Schulte, H.K.; Campbell, K.L.; Bates, A.; McCune, L.; Howard, A.F. “What We Want Is More Access…”: Experiences of Supportive Cancer Care and Strategies for Advancement in a Canadian Provincial Cancer Care Organization. Curr. Oncol. 2021, 28, 2227-2238. https://doi.org/10.3390/curroncol28030205
Avery J, Schulte HK, Campbell KL, Bates A, McCune L, Howard AF. “What We Want Is More Access…”: Experiences of Supportive Cancer Care and Strategies for Advancement in a Canadian Provincial Cancer Care Organization. Current Oncology. 2021; 28(3):2227-2238. https://doi.org/10.3390/curroncol28030205
Chicago/Turabian StyleAvery, Jonathan, Hannah K. Schulte, Kristin L. Campbell, Alan Bates, Lisa McCune, and Amanda Fuchsia Howard. 2021. "“What We Want Is More Access…”: Experiences of Supportive Cancer Care and Strategies for Advancement in a Canadian Provincial Cancer Care Organization" Current Oncology 28, no. 3: 2227-2238. https://doi.org/10.3390/curroncol28030205
APA StyleAvery, J., Schulte, H. K., Campbell, K. L., Bates, A., McCune, L., & Howard, A. F. (2021). “What We Want Is More Access…”: Experiences of Supportive Cancer Care and Strategies for Advancement in a Canadian Provincial Cancer Care Organization. Current Oncology, 28(3), 2227-2238. https://doi.org/10.3390/curroncol28030205