Early Introduction of Power Mobility Devices for Children with Fukuyama Congenital Muscular Dystrophy and Its Psychological Impact on Caregivers: A Case Report
Abstract
:1. Introduction
Objective
2. Methods
2.1. Participants
2.2. Data Collection
2.2.1. Video Collection
2.2.2. Semi-Structured Interview Guide
- (1)
- How you felt when you decided to introduce PMDfor the first time?
- (2)
- Please tell us what you think about PMD maintenance.
- (3)
- Do you have any feelings about your child’s driving skills compared to before the introduction?
- (4)
- Please tell us about the stress you as parent feel in your life.
2.3. Intervention Details
Introduction of PMD (Figure 1)
2.4. Procedure (Table 1)
Intervention Period (Months) | Age (Y/M) | Place of Use | Adjustment of PMD | Frequency of Use | ALP–Tool * |
---|---|---|---|---|---|
1 | 1Y10M | Outpatient | Initial setting table height chair position | 1/w, 20 min | 1–2 |
2 | 1Y11M | Joystick change (from standard type to small size) Added backrest extension parts for sitting chair | |||
3 | 2Y | Home | Repositioning the controller Attaching the sole installation base Raising the seat | 1/w, 20 min | 3–5 |
4 | 2Y1M | ||||
5 | 2Y2M | As a countermeasure for knee extension, fix the lower leg and chair with an elastic wrap. | 15 min/w | ||
6 | 2Y3M | ||||
7 | 2Y4M | ||||
8 | 2Y5M | ||||
9 | 2Y6M | rarely | 3–5 | ||
10 | 2Y7M | Nursing school | Table size change (extended type → standard size) | 2/w, 10 min | |
11 | 2Y8M | Explanation to nursing staff Halve the height of the sole installation base Release the raising of the seat | 5–6 | ||
12 | 2Y9M | Hospitalized for 3 weeks | none | ||
13 | 2Y10M | Added footrest extension parts | 2/w, 10 min | ||
14 | 2Y11M | ||||
15 | 3Y | 7–8 | |||
16 | 3Y1M | Battery exchange | |||
17 | 3Y2M | ||||
18 | 3Y3M | ||||
19 | 3Y4M | Increase speed and acceleration to medium level Extending the backrest of a sitting chair | 3/w, 15–30 min | 8 | |
20 | 3Y5M |
2.5. Analysis
2.5.1. Assessment and Intervention Methods (from Video Footage of the ALP)
2.5.2. Adoption of the ALP
2.5.3. Interview with the Father
3. Results (Table 2)
Month(s) | Attention | Activity & Movement | Understanding of Tool Use | Expressions & Emotions | Interaction & Communication |
---|---|---|---|---|---|
1 | 2 | 2 | 1 | 1 | 2 |
3 | 5 | 6 | 3 | 4 | 3 |
9 | 5 | 5 | 5 | 3 | 3 |
11 | 5 | 6 | 6 | 6 | 5 |
15 | 8 | 8 | 8 | 7 | 7 |
19 | 8 | 8 | 8 | 8 | 8 |
3.1. Adverse or Unanticipated Events That Interfered with the Intervention
3.2. Interview with the Father (Table 3 and Table S1)
Text | <4>Themes and Compositional Concepts | |
---|---|---|
(1) First time the PMD | My child had a muscular disease called Fukuyama muscular dystrophy, which was diagnosed when she was three months old, and we found out that something was wrong when she went to pediatric hospital. We were groping around, and it was the first time for us, so we didn’t know what to expect. We were groping our way through it all, and it was the first time for us, so we didn’t know what to expect, but as we were promoting her growth, we found that we were connected with people all over the country who had the same symptoms, so we happened to find out about Baby Loco at the same time. We happened to know about Baby Loco at the time when we wanted to buy it, but as Ms. Fujita said before, we had to purchase it at our own expense, so it was difficult for us to get hold of it. I happened to mention it to the physical therapist at pediatric hospital, and she told me that there was someone who wanted to use it, so it was really perfect timing for us. So we thought, well, this really fits the bill, so we’d really like to borrow it, so we’re going to use it. So, we were like, well, if we can provide that kind of information, if it’s good enough for our child, we’d be happy to use it, so we were like, we’d love to use it at the right time. Yes. | Explanation of how the disability was discovered/ Diagnosis of intractable disease and budding anxiety about the future/ Emergence of the barrier of information refugees/ Encounter with unapproved devices guided by empirical knowledge/ Willingness to work together in an interactive manner |
(2) PMD maintenance | I had the battery changed once, but I didn’t think that the battery would be damaged so much if I didn’t have knowledge about it, and also, at the beginning, I had to add more footholds and lift her legs. I had to add some bulk to the foo–holds and other places in the beginning, and I had to raise her legs and so on, so it was very difficult to adjust those places at first. Now that they have done a lot of work, I have nothing more to say about it, but rather than maintenance, I guess, at the beginning, I was trying to find out how to make her ride in the right position and how to make her legs float to make it easier for her to ride this time. | Accumulation of collaborative work with experts/ Difficulty in adjusting equipment through trial and error/ Awareness of need for expertise/ Sustainability of collaborative work |
(3) Driving skills | Ah, well, that’s just the way it is. It’s obvious, isn’t it? I’m still in the middle of being surprised. I don’t think I even knew what that lever was doing at the beginning, and I probably wasn’t even interested in it in the first place, or even tried to touch it. I just sat there and felt like there was something there. I didn’t even think I could operate it by herself. So before the nursing school, she was still practicing operation with the PT at the hospital. And she was able to move forward and backward little by little, but as you can see, she didn’t want to go there in the first place. She don’t think she were really happy to be ridden, or she didn’t remember the fun of it, or she wondered why she was being ridden and going around in circles like this. So, yes, until this point, she really only had the feeling that she wanted to go forward on our own volition. I think it was after the introduction of the nursing school, which, to be honest, I had not yet ridden that many times at home. We were really surprised, too. We didn’t think she would be able to operate it to such an extent. We happened to bring it home to recharge it, and when we let her ride it at home and saw this scene, we were really surprised. But this is my younger daughter, and she moved to my younger daughter’s place by herself, of her own volition. I was also able to see how she could operate it, for example, by moving forward and sideways while changing direction, but compared to the first time, I could see that she really wanted to go where she wanted to go on her own. So, I think that now, she is touching it as if it was one of her own means of action. | <Before nursing school, before introduction> Guidance to doubts about proficiency in equipment operation during the stagnant learning period. <After introducing it to nursing school> Surprise at the rapid growth of operating technology /Automation of active movement |
(4) Stress in parents’ lives | Well, stress, well, there is not much I can do about it, well, I don’t really think about it like this, but I am really glad that we introduced it, because now she can play with my younger daughter more, and by being able to do it like this....... If she had been sitting like this, she wouldn’t have been able to approach them and play with them. So, in that sense, I felt that we were able to create an environment where the sisters could get along well with each other. I don’t feel too stressed. On the contrary, I now think that it was a good thing as I said before. | Emergence of positive changes in relationships, etc./ emergence of active involvement in the surrounding environment |
Theoretical description | ||
Parents of children with congenital disabilities may expect that the introduction of equipment will provide practice for future mobility and that the child will gain mobility experience on her own. Immediately after the introduction of the equipment, we sometimes feel that the children do not understand the situation when they ride on the unknown equipment, and we sometimes feel that there is no change in the children’s driving skills compared to before and immediately after the introduction of the equipment. After the introduction of the equipment, the operability of the equipment improves and the child begins to understand the mechanism of the equipment after the equipment is adjusted. The environment changes, and the child’s driving skill improves significantly, and the child’s needs for daily mobility behavior may be felt. Comparing the initial introduction with the present, the father may feel a significant growth in the child’s driving skills, such as the emergence of goal-oriented driving, and these successful experiences may lead to unexpected conceptual changes and joyful. |
4. Discussion
Methodological Considerations
5. Conclusions
Supplementary Materials
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
References
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Fujita, H. Early Introduction of Power Mobility Devices for Children with Fukuyama Congenital Muscular Dystrophy and Its Psychological Impact on Caregivers: A Case Report. Pediatr. Rep. 2023, 15, 403-413. https://doi.org/10.3390/pediatric15030037
Fujita H. Early Introduction of Power Mobility Devices for Children with Fukuyama Congenital Muscular Dystrophy and Its Psychological Impact on Caregivers: A Case Report. Pediatric Reports. 2023; 15(3):403-413. https://doi.org/10.3390/pediatric15030037
Chicago/Turabian StyleFujita, Hitomi. 2023. "Early Introduction of Power Mobility Devices for Children with Fukuyama Congenital Muscular Dystrophy and Its Psychological Impact on Caregivers: A Case Report" Pediatric Reports 15, no. 3: 403-413. https://doi.org/10.3390/pediatric15030037
APA StyleFujita, H. (2023). Early Introduction of Power Mobility Devices for Children with Fukuyama Congenital Muscular Dystrophy and Its Psychological Impact on Caregivers: A Case Report. Pediatric Reports, 15(3), 403-413. https://doi.org/10.3390/pediatric15030037