Participants
A total of 34 individuals with CRC participated in semi-structured interviews, all in English, which lasted between 30 to 60 minutes. Demographicinformation is given in Table 1, including the sex distribution which was nearly equal with 18 (52.9%) female. Twenty (58.8%) were diagnosed with CRC on or after the age of 50 years (aCRC) and 14 (41.2%) before the age of 50 years (yCRC). Table 2 summarizes CRC characteristics. Altogether, 47.1% of participants had colon cancer (n = 16), 35.3% had rectal cancer (n = 12), and 17.7% had cancer from both sites (n = 6). The majority of participants with had Stage II (n = 10, 29.4%) and III (n = 11, 32.4%).
Characteristic
|
Total
(n=34)
|
Age at diagnosis
|
|
20-29
|
5 (14.7)
|
30-39
|
4 (11.8)
|
40-49
|
5 (14.7)
|
50-59
|
6 (17.7)
|
60-69
|
8 (23.5)
|
70-79
|
5 (14.7)
|
≥80
|
1 (2.9)
|
Current age
|
|
20-29
|
3 (8.8)
|
30-39
|
4 (11.8)
|
40-49
|
4 (11.8)
|
50-59
|
4 (11.8)
|
60-69
|
10 (29.4)
|
70-79
|
8 (23.5)
|
≥80
|
1 (2.9)
|
Sex
|
|
Female
|
18 (52.9)
|
Male
|
16 (47.1)
|
Province1
|
|
British Columbia
|
23 (66.7)
|
Ontario
|
9 (27.2)
|
Alberta
|
1 (3.0)
|
Nova Scotia
|
1 (3.0)
|
Residence1
|
|
Urban
|
23 (69.7)
|
Rural
|
10 (30.3)
|
Education level
|
|
Postsecondary
|
28 (82.4)
|
Secondary
|
6 (17.7)
|
1Missing one response
|
Table 1
Participant characteristics
Characteristic
|
Total
(n=34)
|
CRC type
|
|
Colon
|
16 (47.1)
|
Rectal
|
12 (35.3)
|
Both Sites
|
6 (17.7)
|
CRC stage
|
|
Stage 0
|
3 (8.8)
|
Stage I
|
2 (5.9)
|
Stage II
|
10 (29.4)
|
Stage III
|
11 (32.4)
|
Stage IV
|
6 (17.7)
|
Do not know
|
2 (5.9)
|
Time since diagnosis
|
|
≤ 2 years
|
11 (32.4)
|
3-5 years
|
12 (35.3)
|
6-9 years
|
7 (20.6)
|
≥ 10 years
|
4 (11.8)
|
Doctor at diagnosis
|
|
Surgeon
|
21 (61.8)
|
Gastroenterologist
|
9 (26.5)
|
Family doctor
|
3 (8.8)
|
Oncologist
|
1 (2.9)
|
Treatment type2
|
|
Surgery
|
32 (94.1)
|
Chemotherapy
|
22 (64.7)
|
Radiation
|
12 (34.3)
|
None
|
1 (2.9)
|
Number of treatments
|
|
Single
|
9 (26.5)
|
Multiple
|
24 (70.6)
|
None
|
1 (2.9)
|
Past cancer history1
|
|
Yes
|
7 (21.2)
|
No
|
26 (78.8)
|
1Missing one response
2 Multiple response answer
|
Table 2
Health information seeking
We identified three themes that reflect participants’ health seeking in terms of perspectives on sources primarily sought for health information on CRC. Accordingly, these themes were: 1) perceived expectations of physicians; 2) importance of make personal and social connections; and 3) use of the Internet for information. These themes and sub-themes are described as follows.
Theme 1: Perceived expectations of physicians
Physicians were one of the main sources that participants sought for information about CRC. Sub-themes describe the reliance on physicians for information on CRC, the complexity of patient-physician interactions and the role of printed information materials provided by physicians, and feelings towards physicians after completing treatment for CRC.
Sub-theme 1: Relying on physicians for information on diagnosis and treatment of CRC
Physicians are typically the first point of contact for individuals after being diagnosed with CRC. Many participants found physicians helpful regarding answering questions about diagnosis and treatment. Participants largely shared that their physicians often eased their concerns, explained treatments, and addressed questions: "[… and] got all the time in the world to talk to you about your questions.” (age 70–79). We observed this reliance on physicians for information on CRC, particularly its treatment, regardless of age diagnosed as reflected by this quote from a younger participant:
“My medical oncologist went through possible treatments with me, went through every single page and read it to me to make sure I understood” (age 20–29)
Altogether our interviews revealed that physicians are critical sources of information for individuals with CRC, particularly as often being the first to speak to patients about their diagnosis and subsequent treatment.
Sub-theme 2: Varied interactions and relationships with physicians
Interviews suggested that that interactions and relationships participants had with their physicians largely varied—with some sharing both negative interactions while others shared positive interactions. Perceptions of negative interactions included feeling rushed or dismissed, for example, one participant shared:
“I didn’t feel comfortable. [My physician] didn’t talk to me before or much after. [They] was dismissive of my condition and I, I just didn’t feel happy about it.” (age 60–69)
We identified nuances with negative experiences shared. For example, as a consequence of feeling dismissed by physicians, participants shared that they often sought health information on their own, typically on the Internet (as further described in Theme 3). Notably, we also found that those diagnosed with CRC at younger ages, that is below the age of 50 years, more frequently shared that dismissal of their symptoms by physicians led to negative experiences, particularly around the time of diagnosis. One participant recounted:
“Sure it may have only been a hemorrhoid but it wasn’t. So I don’t know if they were just lazy or … [their] story was I’m a new patient to [them] and [they] didn’t have all my history. There’s bleeding, there’s irregular bowel habits, you’re the frickin’ doctor, I know this and I’m not even a doctor.” (age 40–49)
On the other hand, it was clear when participants had a positive relationship with their physicians. Those with positive experiences reported that their physician took the time to explain their diagnosis and treatment as captured by this quote:
“I had a, really an awesome surgeon and, and [they] and I discussed … colon cancer at length and, and statistics and so on…” (age 20–29)
We also found that those sharing positive experiences are those who felt supported by their physicians not only with regards to information about CRC, but also emotionally as well:
“I was more than satisfied with not only the information but with the support. I actually wasn’t expecting to have such emotional support from the doctors to be honest.” (age 30–39)
In identifying varied experiences with physicians by participants, interviews uncovered insights, for example, seeking information from other sources as a reaction to negative interactions with physicians. However, with positive relationships, participants felt that physicians provided exceptional care and support.
Sub-theme 3: Receiving printed information from physicians
The topic of printed information on CRC, particularly from physicians was also discussed by a number of participants. As with interactions with physicians, experiences were quite varied. Some participants indicated that they did specifically seek out information on CRC in print, but were provided these by their physicians who went through content with them:
“I got a lot of pamphlets. It was a lot of paper and my medical oncologist …went through every single page and read it to me to make sure I understood…” (age 20–29)
However, not all participants were provided with print materials by their physicians. Some participants shared that they were given printed materials after requesting, in some cases without explanation of the content:
“I had my pages of questions that I basically went through with them. And [they] reached up … pulled out a, a little blue book that was published by Colorectal Cancer… [they] never mentioned that to me …[they] never brought it up.” (age 70–79)
This final sub-theme captures experiences with receiving printed material on CRC from physicians. As with interactions, experiences among participants varied with respect to whether these were provided directly or provided after requested by patients. There were also differences with respect to whether participants indicated that their physicians discussed content of these materials with them or not.
Sub-theme 4: Feeling abandoned after completing active treatment for CRC
The fourth sub-theme describes the experience that participants had once they completed treatment for CRC, they are often no longer regularly connected with their physicians. A few participants reported feeling abandoned by their physicians after they finished their treatment. One participant expressed wanting an expanded program because they did not experience adequate continuity of care.
“I worry that people get forgotten once they’re at the point where active treatment is over or people, even if they aren’t forgotten they feel forgotten.” (age 70–79)
Participants indicated not knowing about how to or where to access information and resources for managing long-term side-effects of CRC treatment such as neuropathy and bowel irregularity. One participant said,
“they tell you a bit but I don’t think they tell you very much. And cause several of the things that I felt were really lacking had to do with diet and cooking” (age 60–69)
As a consequence, this hindered their ability to fully function in their daily lives. Altogether, participants who had completed treatment felt that they have been left on their own to navigate their future care. This sub-theme reflects a potential gap as often these individuals continue to have health-seeking needs after treatment for CRC.
Theme 2: Importance of personal and social connections
The second theme describes how participants sought information on CRC from personal connections made with other individuals with cancer, particularly in-person. This theme includes sub-themes of: knowing someone else with cancer,seeking out connections with other individuals with CRC, and identifying gaps in support groups for CRC.
Sub-theme 1: Knowing someone else with cancer
A number of participants indicated that they knew someone else with cancer, although not necessarily CRC. These individuals were often friends, families, and colleagues. Participants often connected with these individuals right after diagnosis to seek out information. We found that those diagnosed with CRC at a younger age particularly sought other individuals who had been diagnosed with young-onset cancer:
“I spoke to a colleague of mine who was actually also … around my age, young kids, and went through breast cancer treatment a couple of years ago and … I connected with [them].” (age 30–39)
These younger participants shared a reason for seeking these personal connections was to gain insights and advice on issues not often discussed at healthcare visits, such as working and parenting with cancer. As these issues are not specific to CRC that may explain why younger participants sought connections with other individuals diagnosed with cancer at similar ages.
Sub-theme 2: Belonging to cancer communities
Frequently after being diagnosed, many participants reported seeking support groups and communities, including those with individuals also diagnosed with CRC but as well as other cancer patient communities. With respect to CRC-specific groups, connecting with others individuals diagnosed with CRC allows participants to seek out CRC specific information, guidance, and support. This was particularly important as participants shared embarrassment and stigma associated with CRC due to the location of the cancer and unique challenges with treatment such as requiring an ostomy. Connections are made both through in-person support groups (offline) and online, through Internet-based forums and communities (related to Theme 3).. The value of group membership includes learning from others’ experiences as well as reassurance of their feelings and thoughts as they deal with CRC as shared from a participant who attended an in-person support group:
“I talked to [someone] who … was recently diagnosed and finished 12 rounds of chemo, … and [they] knew about my CT scan…So that kind of thing and it was so nice to hear that okay, I’m not the only one feeling that way, right?” (age 70–79)
Indeed, whether offline or online, being part of these communities allowed participants to connect with others who can relate with their experiences:
“Within the first month of being on YACC [Young Adult Cancer Canada], I met somebody who is my age with the same diagnosis in my city…like somebody else who understands what I’m going through.” (age 20–29)
Altogether, this sub-theme captures the importance of cancer support groups as they allowed participants to not only gain information, but also connect with others experiencing similar experiences or who are in similar situations. These connections gave participants a sense of community.
Sub-theme 3: Experiencing gaps with current in-person cancer support groups
Related to prior sub-theme, a third sub-theme describes gaps identified with respect to support groups, particularly those held in-person. While some participants reported attending in person support groups offered by cancer organizations or medical centers, several participants reported a feeling of disconnect within the meetings. Participants spoke about not feeling like they belonged as reflected with this quote:
“I thought how will it be for me to turn up at these things where someone is without their hair because they’re having chemo … or someone is dealing with all of the possible outcomes of colon cancer and I say, “Well gosh guys I was so lucky. They took mine out. There was nothing in the lymph nodes. … Do you think I could do that to people? I just, I just felt I couldn’t. Not at a support group where … most people might be really dealing with serious ongoing implications of cancer.”” (age 60–69)
Participants who were diagnosed with CRC at a younger age " found [it] challenging [to find support groups specifically aimed at young-onset CRC because] a lot of the support that was out there was for young women that had had women’s cancers like breast cancer or ovarian. I felt like there was a gap … because my cancer is associated with like an old person.” (age 30–39)
Participants residing in rural communities also reported wanting to join a group, but not being able to due to geographic and time constraints. One participant residing in a rural community reported,
“There really wasn’t anything like that here in our community and when I was dealing with it most was through the winter months and just driving into [city] I had to go there often enough for different things, I, I didn’t want to have to go in for any group things in [city].” (age 50–59)
Finally, some participants also shared experiences with lack of CRC specific support groups. Many participants felt there could be more sessions that address unique CRC issues, such as ostomy care. One participant spoke about searching for a CRC group in their city,
“I’ve never actually found one, and in fact…, I’d be really interested.” (age 50–59)
Altogether participants indicated that they sought in-person support groups for people with cancer. However, we noted challenges including accessing these groups, particularly for participants living in rural areas. We also noted a lack of availability of CRC-specific support groups, suggesting a gap given unique characteristics of CRC and potential associated stigmas that individuals may not feel comfortable sharing with others who do not experience the same type of cancer.
Theme 3: Use of the Internet for information
The third theme describes a key study finding that almost all of the participants spoke about using the Internet to seek not just health-information for CRC but also support, with two sub-themes of: using credible sources and the role of the Internet in supporting connections with other individuals with CRC and cancer. After receiving their initial diagnosis, many participants shared often returned home and immediately searching for information on the Internet about CRC: “After my colon cancer diagnosis, I was like on Google like crazy.” (age 20–29). Participants sought out information regarding treatment options, side effects, recurrence, and prognosis, indicating that they wanted to know what to expect with a CRC diagnosis and the Internet providing an accessible resource to search for information.
Sub-theme 1: Using credible Internet sources
Participants shared that when seeking out more information on CRC, they turned to websites such as PubMed, cancer centres and hospitals, universities, and registered cancer organizations, indicating that they chose these websites because of their reputation. We found that participants are aware that there is a lot of misinformation about CRC on the Internet as captured by this quote:
“The Internet has been a good thing because you know there’s legitimate research on there but you have to be very careful.” (age 50–59)
With the majority of participants having post-secondary education (n = 28, 82.4%), many shared being in professions (e.g., lawyer, nurse) that provided them with skills to identify reliable information on the Internet. One participant with a background in science attempted “to get reputable resources for info and some scientific papers too” (age 20–29). It is not surprising that all participants indicated seeking health information on CRC using the Internet. However, this sub-theme revealed participants’ perspectives on the importance of finding credible information online and were wary to misinformation being spread on the Internet.
Sub-theme 2: The role of the Internet in supporting connections with other individuals with CRC and cancer
In addition to information on CRC, many participants shared that the Internet also played a role in supporting their connections with other individuals with CRC and cancer through channels such as online forums, Facebook groups, and YouTube. This sub-theme is related to prior sub-themes in Theme 2 on the importance of joining cancer support groups and communities and identifying gaps in support groups for CRC in that through these Internet-based channels, participants are able to discuss diagnosis, treatment options, side-effects, along with other aspects of life that CRC and cancer has impacted. One participant spoke regarding their online CRC community,
“Oh my god. They [COLONTOWN] were […] my total absolute salvation. I learned so much there. I didn’t really clue into it until somewhere in the middle of my second round of treatment, the chemotherapy, and I wish I’d known it from the very beginning ‘cause it was just so, so helpful.” (age 70–79)
Participants diagnosed with CRC at a younger age also told us about online communities which allowed them to connect with individuals that shared the same young-onset related concerns and questions. Frequently, these younger participants joined general young-onset cancer online communities because they felt that these were more relevant to their situation:
“The biggest problem for me when I was first diagnosed was that there was a lot of support groups … but it was 50 or 60-year-old people that had totally different concerns going into it than what I had so it was… hard to get support going to those groups, like any of the local groups and that type of thing because they just, they couldn’t offer the support that I needed but whenever I found that Young Adult Cancer Canada group, it was like it was a huge relief to be able to have people to talk to about it that actually understood my situation and my concerns.” (age 20–29)
Although many participants reported that they connected with others on the Internet, a few
participants also indicated that they were unaware that they could connect with individuals diagnosed with CRC online. This was particularly true for older participants as reflected with this quote:
“And I didn’t know that, that there were any. So that, that is interesting and… how would you get that information?” (age 80+)
Overall, this sub-theme highlighted the important role of the Internet in facilitating connections for participants with other individuals with CRC and cancer through various channels. Nonetheless, despite being a highly utilized resource, interviews also suggested some disparities with respect to knowledge of online communities for CRC, particularly with older participants.