Background
Methods
The acceptance of Rheumates@work
Patients
Acceptance
The theoretical background of R@W
The design of Rheumates@work
Week | Pre-testing | |
---|---|---|
2 to 4 before start | Rheumatologic evaluation | |
Fittest | ||
Measuring PA by filling in an activity diary and wearing an accelerometer | ||
Week | Theme | Assignment |
0 | Start; Buddy, the cartoon figure who leads the child through the program, is introduced. | No Assignment |
1 | What is JIA and what is wrong with the immune system? The child is educated about the immune system by means of animations. How it works in normal situations, and in case of an auto-immune disease. | A skeleton called Hein, with a magnifying glass. When the child touches one of Hein’s joints on the screen, an X-ray image of that particular joint appears. |
2 | How to tackle disease-related participation problems. The schedules problematic situation, thoughts, feelings, and action are introduced. The child learns to cope with set-backs. | The child has to imagine a difficult situation related to the disease. Stepwise, he/she has to devise a positive solution. |
3 | Energy and condition. The child learns to cope with fatigue and learns to manage his or her energy level during the day and throughout the week. | The child makes a puzzle. He or she has to assemble a skeleton. After completing the skeleton Buddy pays the child a compliment. |
The child has to indicate how much energy he or she has by pointing to a color in a battery: red is empty, yellow is half full, and green is full. | ||
The child learns about the mechanism of exercising. While resting on the couch he or she has to count his or her heart rate and breathing frequency. Then he or she has to do the same after running around the house. | ||
4 | How to be active in a healthy way. The child learns to manage activities and to be active, and to stay active during times of active disease and during remission. | The child fills out his or her preferred activity, then he or she must indicate how he or she could improve his or her level of activity. For example, by adding an activity or by increasing the frequency. |
5 | Pain. How to differentiate between JIA and pain any child could experience, like muscle ache | The child has to describe situations in which he or she feels either cross, tired or sad. or happy. Then, he or she has to complete the following sentence: “When I’m cross, tired or I think of… I feel ..and I act ..”. Subsequently he/she has to change the cross/sad feeling into a positive feeling or action like calling a friend. The same goes for the situation in which the patient might feel pain. |
6 | Setting goals. The child looks at his or her own goal that was set in the first group session and is helped to formulate two SMARTs, i.e. specific, measurable, acceptable, realistic, and time- limited goals. | The child formulates two SMART goals to facilitate the goal that was set at the beginning. He or she has to answer the question: What do I want to achieve? How can I reach this goal? How often and how much time do I spend working on it? How much help do I need from other people? Will I succeed? |
7 | How to increase motivation by rewarding yourself. The child learns that when you achieve a goal it is good to reward yourself. | The goal is stabilized. The child has to answer the same set of questions as in Week 6. Next, the child thinks about how he or she could reward himself or herself after reaching his or her goal. |
8 | Taking responsibility. Barriers and benefits. The child learns about the barriers and benefits one meets when wanting to change activity-related behavior. The child is made aware of the benefits of being active. | The child has to click on an excuse machine, which gives excuses for not being active. After that the child has to type his or her best excuse and then he or she has to give the advantage and disadvantage of making this excuse. |
The next issue is physical limitations. The child has to hold his or her breath. Buddy also holds his breath and also becomes red in the face. This is a physical limitation because after several minutes the child must breathe out. Then the child has to provide two examples where h or she reached a physical limit. The child is taught that in some situations he or she can stretch his or her limit and that in some situations it is better to respect one’s physical limitations. | ||
9 | Activities and chatting. Every child has to fill out an activity diary for one day. All the children will then join in a chat session led by a supervisor to discuss their experiences. | The child has to fill out the activity diary for one day. |
10 | Doing things together and asking for help. Being active together with friends is more fun. The child learns what he or she can do with friends. And the child is stimulated to ask for help when it is difficult to do something because of JIA. | In three difficult situations, which have to do with JIA, the child has to decide whether or not to ask for help. For example, he or she is in a supermarket and has to take a product down from a high shelf while his or her joints are hurting. The child is encouraged to ask for help. |
11 | Talking about JIA. Being open about JIA can be beneficial to the child. | The child has to fill out a step plan about a situation in which a friend wants to skate but his or her ankle is hurting. Step1: Stop and think. Look at Hein and mark where it hurts. 2 What is the problem? 3. Which plans do I come up with? 4. Which plan do I choose? 5. Does the plan work? |
12 | Setbacks. The child learns that JIA is a disease that can fluctuate. The child learns how to adjust his or her goal when the arthritis becomes active again. | The child has set himself or herself three goals. The first at the start of the program and the others in Week 6. In this week he or she has to adjust the goals in case JIA is active. For example, cycling for 15 min instead of 30 min. Or cycling on alternate days. |
13 | Motivation. The child learns that it is important to persevere/to ‘keep it up’. One can keep up by developing motivation. The child is made aware that motivation is like a reward: when you reach your goals you have achieved something worthwhile. | In this week the child is motivated to adjust his or her goal if it has been reached in order to improve his or her capabilities. The child has to supply a motivation to adjust the goal. This is combined with a reward |
14 | During the last week everything the child has learnt is summarized | No assignments. |
Week | After-testing | |
2 after finish | Rheumatologic evaluation | |
Fittest | ||
Measuring PA by filling in an activity diary and wearing an accelerometer |
GS | Theme/Timing | Staff (number) | |
---|---|---|---|
1 | What is JIA and what goes wrong with the immune system? /At the start | - Plenary: Children and parents are taught what JIA is and are given tips on how to be physically active despite certain limitations. | PT (2), Phys (1) |
- Children: setting goals for the next 14 weeks on the basis of their fittest level of activity | |||
- Parents: introducing themselves to one another and exploring the burden of having a child with JIA. | |||
- The children sign the declaration of commitment | |||
- The children formulate a goal for the health provider | |||
2 | Excuses/week 4 or 5 | - Limits to physical activity. Some children have to be encouraged to be physically active and others have to be taught to taper physical activity. In both cases excuses are made up, which are discussed during this group session. | PT (1) Phys (1) S(1) |
- Children: perform a role play and create a goal for the health professionals. | Psych (1) | ||
- Parents: discuss the burdens that were mentioned in Group Session 1 and are given tips by the health professionals on how to deal with these burdens. | |||
3 | Doing things together / Week 10 | - Skill games are played with the children’s friends and/ or their siblings, and with the parents. | PT (1) S (2) |
4 | What have we learnt and how to persevere / Week 14 | - Plenary: repetition of the theory. Doing a quiz | PT (1) Phys(1) |
- The health professionals have to perform the goal set by the children previously. | |||
- Hand out the Certificates of Participation and crack open a bottle of bubbly to celebrate the successful completion of R@W. |
Results
Participants | |
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N = 64 | |
Man /woman | 23 / 41 |
Age (years) | 10.0 ± 1.4 |
Disease duration (years) | 9.4 ± 1.4 |
Diagnosis (N) | |
P-oligo | 19 |
E-oligo | 8 |
Poly Rf- | 20 |
Poly Rf+ | 3 |
Psoriasis related | 3 |
Enthesitis related | 3 |
Systemic | 8 |
Acceptance
Commitment
Mean (SD) | % | |
---|---|---|
Participants who had completed the weekly assignments by Monday | 53.0 (6.5) | 82.1 (10.4) |
Participants who had completed the assignments by | 54.5 (8.2) | 83.7 (12.9) |
Monday | 8.3 (7.6) | 12.9 (12) |
-Completely | ||
-Incompletely | ||
Number of participants per week who sent an e-mail- of which type: | 6.9 (4.6) | 10.7 (7.2) |
•Technical | 1.7 (2.5) | |
•Something not clearly understood | 1.1 (1.1) | |
•Friendly communication | 2.6 (1.7) | |
•Parents | 0.5 (0.8) | |
•Response to a reminder | 1.1 (1.3) | |
Present at the group sessions | ||
− 1 (reason for absence specified) | 58 (3) | 90.6 (4,7) |
− 2(reason for absence specified) | 57 (5) | 89.1 (7,8) |
− 3(reason for absence specified) | 54 (7) | 84.4 (10,9) |
− 4(reason for absence specified) | 47 (15) | 73.4 (23,7) |
Technical aspects
Level of interaction
Satisfaction
Positive aspects of R@W | Points for improvement | |
---|---|---|
Parents | - The children experienced that they were not the only ones with arthritis and that it helped to talk about it. | - Classification by age (8–10 and 10–12). |
- To talk about arthritis in a positive manner. | - More assignments for physical activities. | |
- To have peer contact. | - More involvement of the parents during the program. | |
- To receive education and information. | - Make the assignments less childish for the older kids and easier for the young ones. | |
- To be understood by other parents and coaches. | - Create the possibility for the children to chat without the supervisors listening in. | |
- To share experiences, and to receive tips. | - Fewer group sessions. | |
Patients | - I liked it very much. | - It was too childish. |
- I made a new friend. | - Buddy was not original. | |
- I liked Buddy very much. | - I would like more physical assignments. |
Costs
Discussion
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A reason for the high rate of commitment could be that the participants in our study were well-motivated and actively sought help in dealing with their disease. Only 30 % of the patients we approached were willing to participate. This could indicate that the participants represented the most motivated children. We did not find a difference in commitment between the three centers, even though the number of patients from each differed greatly. We were not allowed by the Ethics committee to ask why patients were not motivated to participate, so we do not know the reasons for the differences in participation between the hospitals. A possible explanation could be that the children in BCH knew the project leaders and thus were inclined to feel more committed. Another reason could be that in WCH many of the patients were already participating in one or more studies. Finally, a factor that could have influenced the participation rate at Reade was that many of the patients had just completed a rehabilitation program, which had been offered to many children diagnosed with JIA. In the BCH, where we had a participation of 88 %, almost all children completed the program. Potentially less motivated children also completed the program.
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We based the topics on what we knew from the literature as being the burden of living with JIA. R@W reflects the needs of the patients [30]. This probably leads to high commitment.
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The high commitment could also be explained by the declaration of commitment we asked the participant to sign. Possibly this made them adhere to the program more than they might have done otherwise. According to the HPM it is important to literally commit oneself to the program [26].
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R@W lasted 14 weeks with a time investment of at most one hour a week, which seemed reasonable to the participants. Although the role of duration and time investment in participants’ adherence is not explicitly described in the literature, it could be one of the factors influencing commitment [36].
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Another reason might be the interactive character of the program, which could have had an engaging effect on the participants. The value of interaction for the strength of patient commitment has not been investigated in the literature. Our analysis showed that more than a third of the participants had some kind of contact with the supervisors. In most cases this contact centered on reminder e-mails. We did not investigate whether this led to increased commitment or not.
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We point out that our program was based on an existing theory developed for the express purpose of changing health-promoting behavior.
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Finally, R@W was combined with group sessions, which involved a limited number of participants at a time. This could have increased participants’ commitment and adherence to the program as well as that of their parents. In a study with adolescent patients, parents were less compliant than their adolescent children. In our study, however, we found that parents of our patients aged 8–13 years, were well-motivated to complete the program [35]. The parents of children in the age of 8 to 13 may feel more responsible for the education of their children than parents of adolescents. In our study, parents liked the program and appreciated the peer support. In the case of R@W, 95 % of the parents felt that their child had learnt something, which could be a motivation for commitment.