Degree of impact
Participants reported diverse effects of the CDSMP workshop, ranging from having a profound impact on one particular area to affecting all aspects of their lives to having no effect. A few participants noted the effect was immediate, when they realized they were not alone. Thinking back to the workshops, one participant said:
"It was the first night when my whole world changed. … The first thing we did was talk about feelings and, you know, I was amazed that we all had the same feelings of guilt, of depression, of frustration, etc., it didn’t matter what the illness was. And that, to me, was really empowering, like just to know that I wasn’t isolated, I wasn’t the only one (FG2)."
For others, however, it was a while before they were aware of any effect and for some, it was not until faced with another new health challenge that they realised the workshop had had an effect. As one participant stated, “I took the course and it did help me a lot. And actually it is kicking in a lot more now because I was recently diagnosed with type II diabetes. I have learned how to use what we got in the course to cope with it” (FG4).
Change in physical activity
A change in physical activity patterns was the most prominent difference in behaviour, noted by more than half the participants. This did not necessarily imply an increase in the rate of physical activity. Rather, within this single behaviour, the effect was quite diverse. For some, it was finding new ways to exercise based on ideas shared during the workshop. For instance, one participant adapted her physical activities to maintain a satisfactory level of activity: “Rather than doing the exercise class I have been doing for several years [which] I can’t do because of the pain, I switched totally to chair exercise” (FG1). For others, a change in physical activity meant being creative in finding the time to exercise, including doubling up on activities, such as what one participant called “aerobic cleaning” (FG4) or taking part in physical activity programs at the same time and location as other family members to reduce the number of trips made and time spent traveling (FG1).
For most who noted exercise as a benefit, integrating walking into their lifestyles was the single most reported result. The effect was quite varied: simply starting, increasing the minutes significantly or changing how or with whom they walked. One participant said: “I just recently found another lady who loves to walk, so we do what we call ‘the square,’ it’s an eight-kilometre walk” (FG3). Another participant explained how she integrated walking into her daily routine: “[My son] got me the cutest little dog and… and I have to walk him… I’m not afraid to go outside anymore. I used to protect myself from the outside because there were so many triggers out there. I was really very worried and now I go outside and I walk him for two hours a day…and I think in order to be able to even do that, I think the group was very helpful” (FG2).
Change in personal interactions
Another recurrent effect noted by participants in all four focus groups was an improved sense of social connection. Many participants noted a decrease or elimination of a sense of isolation through an increased sense of common ground. Recalling a fellow male peer expressing his emotions in the group another male participant said, “I think men are kind of scared to express how they feel… it’s not manly. Some of the things that came out at those sessions certainly helped me. I kind of felt good about it, that I’m not the only ‘sissy’…That sort of opened up a lot of emotions. And it helped me a bit” (FG2). Another participant expressed similar feelings, “I got a lot of comfort in coming just knowing that there are other people having major issues like you…you never felt alone because you knew everyone else had a problem as well” (FG3).
Multiple participants reported a significant effect of the intervention being a change in social interaction patterns linked to new activities. One participant who had started walking noted: “I just said, ‘Okay, I’ll do what I can do and I’m going to go out there and see what happens,’ and I’ve met all kinds of people, you know, and we go out for dinner and it’s just wonderful” (FG4).
Many participants reported a significant effect on how they interact with friends and family and how they receive self-management support from those around them. One participant noted “[the workshops] certainly changed my experience with my son… I find now I am able to say to him ‘I’m not feeling well today… can you pick up the slack?’” (FG2).
Improved coping skills
A final recurrent effect across focus groups was improved coping skills. There were two distinct approaches to coping better with the burdens of living with a chronic condition. Several participants reported developing a more proactive attitude in how they lived and experienced their conditions to enable them to make change happen. A participant described this change in attitude stating, “[the greatest impact of the workshop was] knowing you can manage whatever is going on in your life…it’s not hopeless, you can set goals and reach them” (FG4). Others seemed to develop an acceptance of their situations, which made it easier to cope with their conditions: “When people started sharing, I thought, ‘you know it’s not just me, it’s not just me’. Everyone else is doing the best they can with what’s going on” (FG3). Likewise another individual expressed:
"I’m starting to accept it more than before…it was like ‘This is it, it’s not reversible’. But somewhere in the back of your mind you keep saying ‘Well maybe there’s this’…you start praying…and then you sort of accept it, and then live with it, and do the best we can. That’s one of the things that I got out of this…I went to the course and three of four weeks later I started to look at it differently (FG2)."
Facilitators to self-management
Many participants reported discovering facilitators in managing their health after participating in the workshops. The most frequently reported type was support from friends and family or connecting with another person who had a chronic condition and a level of empathy or understanding that helped them in their self-management process. One participant said, “I liked the goal setting with me it was the walking. I had marked down I would do 60 min or whatever of that walking for that week and I did do that, you know, with my husband…and it’s fun” (FG4). A few participants mentioned the availability of allied health in the community as a helpful resource in improving their self-management. “I also had the occupational therapist and physiotherapists and they were both very useful,” one participant noted. “I also have a chiropractor. … But I had to get them myself” (FG1).
For some participants, the benefits they had hoped to achieve at the onset did not materialize. Some said they wanted more direct and immediate assistance or relief. “I expected more input in the beginning, to tell me that it wasn’t just going to be how I am going to cope with it, [but that] maybe they could help me with the pain,” one participant said (FG1). Others found suggestions offered in the group to be unrealistic for their situation: “Some of the suggestions are a little hard to get…like your physiotherapist. It is hard to get an appointment and then there’s the cost. I just kind of wished there was ideas that were within our means. My doctor is excellent…and my pharmacist is excellent…But as far as other types of resources, they’re just hard to get at” (FG3). Another participant had wanted opportunities to practice self-management activities while at the workshops. She stated, “I was hoping like maybe one session would be half an hour of yoga with a specialist to really get us into that rather than just reading the book, having diagrams of the pictures of the exercises… I wanted someone to show me” (FG1).
Barriers to self-management
Barriers to self-management were experienced by almost all participants and included a range of issues. However, several dominant themes emerged. Problems with the health system were the most frequently cited barriers and, of those, patient-physician interaction was reported the most. Some participants noted the physician’s lack of knowledge or links with SMS resources in the community to be a key barrier. As one participant said: “[Physicians] do not know too much about what [programming] is going on in the vicinity” (FG3). Others cited insufficient time to discuss their personal health agendas with their physicians or a lack of expertise related to their case. One participant noted: “We need more doctors who are willing to undertake geriatric cases … [and] who have experience with geriatric cases” (FG1). Wait times to see specialists and lack of access to allied health were also cited by several participants. One participant shared her frustration with accessing mental health programming in particular: “There’s no programs for us anymore. If I think I’m ready now to go to a group therapy, it’s over a year waiting period … [but] I need that now, not in 18
months’ time. I may be dead by then” (FG4).
Many participants reported other issues, such as financial barriers and accessing additional programs or resources in managing their health. Lack of transportation and such symptoms as pain or fatigue were also cited as limiting factors in the ability to undertake self-management behaviours. One participant shared the impact her symptoms were having on her activity levels: “I was always extremely active and I just don’t have the energy anymore. I’ve had many friends call me to say… ‘We’re going for a walk.’ I said, ‘Well today you will have to count me out, I just can’t.’ So that is disappointing that that happens” (FG3).
The participants reported a wide array of health system and community resources used to manage their health and 20 to 30% of participants noted an increase in use of some resources, particularly nutrition-related ones, following participation in the workshops. Participants reported living in their communities for an average of 28
years and the majority (70%) reported having access to the internet in their homes. Additional survey results reported in Table .
Resources used in participant’s self-management
The small sample size may limit the generalisability of the survey findings. However, the sample included both rural and urban participants and more than half of the original participants in the first four CDSMP workshops. The survey was designed by the team to capture a range of resources across populations, however the tool focused only on frequency of use and may not have adequately captured the types of changes made by participants. Further, participants were asked to recall information on a variety of practices over a year’s time, which might diminish the reliability of the results.