Identifying real and perceived barriers to therapeutic education programs for individuals with inflammatory arthritis

Abstract

Therapeutic Education Programs (TEPs) grounded in self-management principles have been shown to improve quality of life of patients with chronic conditions and reduce patient-related healthcare costs. Though these programs are becoming more readily available, patients often experience barriers in participating. This study sought to identify barriers faced by inflammatory arthritis (IA) patients in attending a TEP and understand how patients overcame perceived barriers. A mixed-method study design was used. Questionnaires were distributed to individuals with IA who were invited to attend a TEP between 2010 and 2013. Respondents were those that chose not to attend (group A), individuals who attended ≤4 of 10 sessions (group B), individuals who attended ≥5 of 10 sessions prior to May 2013 (group C), and individuals who attended ≥5 of 10 sessions from June 2013 to November 2013 (group D). Individuals in group D were also invited to participate in focus groups to discuss how they had overcome perceived barriers. Real barriers identified by individuals in groups A and B included time, distance, and cost associated with attendance. Individuals who overcame perceived barriers (groups C and D) discussed strategies they used to do so. Aspects of the overall program experience and access to clinic and program also contributed to patients being able to overcome barriers. Time, distance, and cost are external barriers that prevented individuals from utilizing self-management education opportunities. These barriers were overcome if and when individuals had resources available to them. Readiness for behavior change also influenced commitment to participate in the program.

Appendices

Appendix I

Focus group questions

Overall/General Comments

• 1. Please describe your experience of participating in the program.

• 2. What are some of the strengths of the program?

• 3. What are some of the weaknesses of the program?

Content

• 1. Were there any topics that you found particularly useful? If yes, describe.

• 2. Were there any topics that you didn’t find useful? If yes, describe.

• 3. Is there any additional information that you would have liked included in the Inflammatory Arthritis Education Program? If yes, describe.

• 4. Is there anything you would have liked more information or more time spent on? Please describe.

• 5. How can the inflammatory arthritis education program be improved?

Program Delivery

• 1. Were there any barriers that impacted your ability to participate in the program? If, yes describe.

  • Probe: Is there anything you feel that the program can do to help people to overcome these barriers?

• 2. What is your opinion about the length of the program?

  • Probe: if the program could be shortened what information is adequately covered in the workbook that you feel could be removed from the formal program presentations?

• 3. What suggestions do you have that might have made it easier for you to attend this program and/or improve patient access to this program in the future?

• 4. Do you think this program could be effectively delivered in an online format? If not, why not?

• 5. What parts of the program do you think would be better learned “in person”?

Educational Benefit

• 1. Will the information from the program improve your ability to manage your arthritis? If so, How?

• 2. How will you use this information to help you manage your arthritis?

• 3. What, if anything, do you still need to learn in order to manage your arthritis effectively?

• 4. Would you recommend this program to other people suffering with arthritis?

• 5. What would you tell someone with arthritis about this program to encourage them to come?

Next steps

• 1. Do you plan to attend the 6 month recall class (6 months after you complete the inflammatory arthritis education program? Please provide rationale for your answer.

• 2. What circumstances would lead you to contact the program after completing the inflammatory arthritis program for assistance or information?

• 3. Is there anything else you’d like to share with the program to help us when planning future educational programs for patients?

Appendix II

Focus group themes

Overall experience

Emotionally Uplifting

Participants found the program to be emotionally uplifting in multiple ways. They stated that obtaining information was a key factor of alleviating the fear of the future, re-establishing confidence, enabling independence, and providing hope. For example, “The feeling I get is they try very hard to be a good mix of realism and that knowledge, but still giving us opportunities to make choices and think about it and there doesn’t seem to be a heck of a lot of pressure” (Speaker 1, Aug 2013, Page 23, Line 32–35).

Participants found that the program validated the experience of having an inflammatory illness, provided empathy, and was a positive experience overall. Speaker 2 (Aug 2013, Page 1, Line 30–32) described it as “Lots of information. It pertains to what you’re going through. You know what you thought was just out there and then oh, that’s what they’re describing; it’s happening to me so now I have a reason for it.”.

Some participants chose to blog their positive experience with the program

Camaraderie

The group-based format encouraged camaraderie by providing an avenue to connect with others in a similar situation and made participants feel that they were not the only ones dealing with the condition. This was described as, “I think the biggest part of this illness is to be feeling alone with your pain unless you met a group…You don’t isolate yourself and try to recover from it by yourself by thinking ‘I’m the only one dealing with it,’ which makes a world of benefit” (Speaker 1, Nov 2013, Page 16, Line 32–39).

Readiness for Behaviour Change

Behavior change was most commonly described as informed decision-making and problem-solving with the interprofessional team. For example, Speaker 2 (Aug 2013, Page 21, Line 36–38) stated “If I know my choices, my options, what’s going on, what to do and what not to do. I can make decisions for myself about how to manage this. If I don’t have that information, I don’t know what to do.”

Changes were encouraged by an understanding of critical need for education, attitude of commitment to change, and frustration as motivation. An example of the understanding of critical need for education was provided by Speaker 1: “Not necessarily is what they tell you going to happen to you. It’s just to have the knowledge, not to scare you or tell you this is going to happen because you have that. They’re going to give you information and stuff, to use so that you won’t get to that point” (Aug. 2013, Page 23, Line 14–17). An example of a participant expressing an attitude of commitment to change was described as:

The thing is you have to think of what you’re doing and why you’re doing it; you’ve been doing things out of habit for 40 years. You think it’s not something very useful, I just do it because I’ve always done it. You question a few things and you get to do them differently, but I honestly think that maybe you didn’t think that way until somebody brought it up at the course. So you think, I could do that that way and there’s a beneficial way of doing it. So, I’m saving myself a lot of energy and doing it much better now. (Speaker 4, Nov 2013, Page 5, Line 22–31)

Barriers to behaviour change were lack of understanding of diagnosis and a hesitancy to obtain information. For example, Speaker 4 (June 2013, Page 18, Line 35–37) stated, “it was just the initial fear, what are you going to find. I know I can’t die from it but yet I was refusing to read it.”

Access to the TAP Clinic and IA TEP

Ease of accessing TAP & IA TEP

Access to The Arthritis Program and the Inflammatory Education Program was characterized by participants’ disease state, exposure and external encouragement, and resources and services available. Participants attended the program as a last resort to obtaining treatment, or if they were encouraged to attend by past participants and medical practitioners. Speaker 1 describes participating as a last resort as, “I think it’s whether people are at the end of their tether who decide to commit to a course like this” (August 2013, Page 11, Line 39–40). Many participants described their exposure through past participants, such as “Well, I learned about the program from someone who had gone through the program and so I was quite interested in finding more about it. So I actually asked my Rheumatologist” (Speaker 3, November 2013, Page 2, Line 22–24).

They voiced appreciation of access to expert professionals working as an interprofessional team, the quality of customer service, and the flexibility for attending the program. Access to an interprofessional team was described as:

I have a few things that I would like to keep an eye on, so I would be more likely to contact the OT or the PT first as my first kind of contact, rather than the doctor. And then, you know, if particular things have gotten worse, then the OT would refer me to my doctor and I would likely not have to wait three months if the OT thinks it’s important. As well, if I was having issues with my medications, I would contact the Pharmacist here. (Speaker 2, November 2013, Page 18, Line 18–24)

Participants would contact TAP services on an ongoing basis if they needed help related to a change in symptoms, required pharmacist advice, or occupational therapy resources.

Barriers to access

Barriers to accessing TAP were specific to the Inflammatory Education Program 6-month Recall Class. Participants stated they would not attend the class due to distance, caregiving responsibilities, or lack of awareness of a 6-month recall class (part of the IA TEP format) at the time of focus group interview. An example of a barrier was described as, “I mean I would be back here in six months for sure, but again obstacles; again so it would be finding a babysitter. It’s going to be the same thing all over. It’s only one day, but I mean, that’s even more impossible, finding a babysitter for a single day” (Speaker 3, November 2013, Page 18, Line 4–7).

Clarifying purpose and existence of program

Participants provided multiple suggestions to increase awareness of the program in the community and clarifying the purpose of the program. Marketing strategies suggested by participants include online marketing, testimonials on the waiting room TV, and increasing awareness in the primary care and general community. They also suggested providing detailed course outlines and clarifying participation between the IA program and the Canadian Early Arthritis Cohort Study, being offered simultaneously. The importance of a course outline to determine willingness to participate was described by Speaker 1 as “I had heard about it from somebody that’s actually been to the program. If I had seen the definition of the program I probably would have been even more interested about it” (November 2013, Page 3, Line 7–10).

Accessing other resources

Participants appreciate the ability of TAP to connect them to other resources. For example, access to the social worker and dietitian, other self-management courses, and relevant information websites. They did voice that dietary information should be included in the program.

Barriers to attending the program and how they were overcome

Work

Participants overcame work-related barriers by working on weekends, re-scheduling their duties, or taking a leave of absence. Speaker 2 stated, “I work full time and the first week I actually came to class and worked in the evening and it was horrible. So this week, I actually took the week off and I’m working weekends and I’m exhausted” (Speaker 2, November 2013, Page 8, Line 41–43).

Some participants had family members alter their work schedules in order for the participant to be able to attend or broke up the 2 weeks of the program across multiple months.

Caregiving responsibilities

Caregiving barriers were overcome by babysitter flexibility and family members taking on participants’ responsibilities. For example, Speaker 3 describes overcoming caregiving responsibilities as “I had to jump, like 3 barriers, to get here because my husband had to switch his shift to be able to take my 6-year-old to school because I usually do it. Because, I had to be here earlier before. So, yeah, I had to do a lot to be able to come here” (November 2013, Page 8, Line 31–35).

Unexpected family demands were caregiving barriers which could not be overcome. Participants suggested childcare subsidies as a means to improving attendance.

Distance

Participants had commutes ranging from half an hour to 8 h one way to attend the program. For example, Speaker 7 stated, “It takes me 8 hours to get here. Actually that’s just one way” (September 2013, Page 11, Line 24).

One participant had to stay at a campground to attend the program. Participants voiced having to get up earlier in order to attend. One participant described this challenge as:

I drive for over an hour, but for me it was … you know the worst time of the day is the morning. You’re so stiff and sore so I was getting up really, really early to be able to be up for an hour, an hour and a half to two hours before I left home and then still having to leave by 7:00 in the morning. (Speaker 3, November 2013, Page 9, Line 8–12).

Cost

The cost of attending the program was identified as the cost of accommodation, gas, and parking. These costs were exemplified by Speaker 2 as, “I had to keep putting money in my car to get here from travelling all the time and obviously paying for parking” (August 2013, Page 9, Line 25–26).

Some participants overcame cost as a barrier by utilizing the Northern Ontario Travel Grant or budgeting for the loss of income for the duration of the program. Participants voiced concern around the lack of subsidy to accommodate the cost of the program.

Health

Some participants voiced illness-related health barriers to participation were fatigue and morning stiffness. These symptoms impacted driving to the program and adjusting pre-existing medication regimens. They also reported that they did not find the TAP classroom very comfortable. For example, one participant commented that, “Fatigue, it’s such a huge part of this problem; whatever kind of arthritis, it’s common, so just waking up extra early and if you have to squish your workday or whatever else needs to happen. I’m just so friggin’ tired and I think I’m not retaining as much as maybe I could” (Speaker 2, August 2013, Page 10, Line 37–40).

Coping

Coping barriers to participation were described as adjusting to a new diagnosis and the stigma associated with having arthritis. The impact of stigma associated with arthritis was described as “They’re afraid; people fear this sickness, they fear entering the building and thinking how is society going to feel about them. You know what, people are ruthless” (Speaker 3, June 2013, Page 17, Line 1–5).

Participants voiced that participating in the program should not be stressful, including having an early start time. Family support was one method of overcoming coping barriers to attend, described as, “I have a husband who has driven me every day and then come again to pick me up so I didn’t have the issue about getting here on time to park, you know going through the stress of driving through the traffic and that sort of thing” (Speaker 4, June 2013, Page 6, Line 9–12).