**2.4 Persistence of pain**

The overall emerging theme reported by participants was the persistence of pain as a result of their scoliosis. This replicates earlier work that has found that for patients who have a form of degenerative scoliosis, lower back pain is the most common presenting symptom [19, 20]. Further work has found that older adults with degeneration believe they are in more pain than both younger adults and adults with standard lower back pain [7, 15]. This research study has highlighted the severity of pain that older people with degenerative scoliosis experience. When the researcher asked the participants questions about their pain and how much pain they were in, they reported a number of difficulties in carrying out everyday activities as a result of the severity of their pain as seen below:

*Some days I cannot move the pain is that bad, it takes me over 40 minutes to do my hair. I wet it, I sit down, I put gel on, I sit down, I brush it and I sit down. (Patient 3)*

Further analysis indicated that the pain the participants were living with had substantial limiting effects on both their activity levels and the activities that they could participate in; these activities were virtually limited to home-based stationary activities such as watching TV. Furthermore, household tasks were also limited to very basic chores such as folding, washing or drying dishes:

*No nothing, I can do nothing (P8)*

*A Mixed Methods Study of the Experiences and Effectiveness of a Soft Brace for Adults… DOI: http://dx.doi.org/10.5772/intechopen.92387*

*I cannot clean the floor and I cannot even stand to do my ironing (P6)*

Participants also identified problems with sleeping before they received the brace, stating that the constant pain they experienced due to their scoliosis significantly disrupted their sleeping patterns.

*I could not move, and I could not be touched, even the bed covers could not be on me (P4)*

*I did not sleep very well at all, because if I moved anywhere, I was, I was erm, I was woken up by the pain, I could not get really comfortable, the pain also had a huge impact on my social life, I ended up with no social life at all, people use to come and see me for a while, but you know, over a year that drops off (P5)*

Other individuals also echoed that before receiving the brace, their activity levels were minimal as a result of their scoliosis.

*I could not walk very far at all. It's affected my life a lot as I used to be dancing all the time, and now I cannot even stand up for a while let alone dance (P6)*

*It's cut off my social life a lot as I cannot play badminton like I used to (P4)*

In essence, pain was a central theme of the patients' experiences of living with scoliosis: all participants explained that they were in constant pain as a result of their scoliosis. From the responses the participants made in relation to living with scoliosis, it was apparent that pain had a substantial effect on all aspects of their lives and on a daily basis. Upon further analysis, a sub-theme emerged which focused on how the pain limited participation in activities, with some reporting only being able to carry out essential household tasks (P6), to the basic challenges of sleeping (P5). Furthermore, the participants' answers to the questions also gave the researcher a base for comparison before they started the trial and once they received the brace.

### **2.5 The impact of the brace on pain and daily living**

The next theme that emerged from the researcher's questions indicated that the patients experienced a small reduction in pain whilst wearing the brace, which in turn led to a positive impact on their activity levels. When the participants were asked if the brace had allowed them to be able to participate in any additional activities or participate longer in activities they could already do, the participants gave answers such as:

*Well I can walk further with my walkie frame (P1)*

*If anything, it's helped me going up and down the stairs as it keeps me more upright, I used to go up and down stairs on my hands and knees but the brace keeps me more upright instead of crawling (P4)*

Further quotes revealed the brace reduced the level of pain that participants reported whilst walking or carrying out everyday tasks.

*My pain has improved yes, especially when I'm sleeping or doing household chores (P5).*

*Yea, it helps, it really helps, it helps to get me out, it gets me moving. (P6)*

*I have got totally active again since receiving it. (P4)*

However, it emerged a reduction in pain was not the belief or views of all the participants, as other participants did not believe they received any benefits from the brace, to the extent that one participant even believed wearing the brace was leading to an increase in their pain.

*Yea my back has started to get worse. (P7)*

*It's affected my sleeping; my sleeping has got worse it feels as if it pulls me into painful positions. (P8)*

In summary, the participants generally indicated that the brace was having a positive impact in terms of improving their quality of life and their overall activity levels. With regard to participants 7 and 8, both dropped out of the trial shortly after this interview.

### **2.6 Problems with the brace**

Patients reported several design problems with the brace that limited the amount of time the participants were able or willing to wear the brace. This was particularly problematic as previous research has shown that bracing is only effective when worn for the recommended time (Rowe et al. and Maruyama et al.) [21, 22]. Participants indicated that they were not adhering to the 8 hours a day, 7 days a week, minimum recommended wearing time that was required to achieve maximum efficiency. They gave a number of reasons for this. When asked how long they were wearing the brace, the participants answered:

*Well approximately 4 days a week, but it really depends on what I'm doing. (P6)*

*I wear it when I'm in the house, but I cannot wear it whilst I'm out as I cannot get it off. (P2)*

Further probing revealed the main reason the participants were not keeping to the recommended wearing time was the brace's practicality and functionality with regard to using the toilet, due to the design of the shorts.

*I find it's really difficult to take it off so I do not when I'm going out. (P2)*

*Because I find the use of the toilet very difficult if we are going to the theatre or places like that. (P5)*

*It's a bit awkward to get it off, if you were to need the toilet. (P6) The only problem is going to the toilet. (P3)*

Furthermore, additional problem participants identified, as a reason for not fulfilling the recommended wearing time, was the cosmetic appearance of the brace under their clothes.

*A Mixed Methods Study of the Experiences and Effectiveness of a Soft Brace for Adults… DOI: http://dx.doi.org/10.5772/intechopen.92387*

*You know, I cannot wear my clothes properly because of that bump in my shoulder from the shoulder strap, in fact it's not the strap, it's the back of the jacket thing that comes across the back of my neck, well it always shows, no matter what I wear. (P4)*

In summary, participants reported several design issues with the brace, which limited the amount of time they could wear the brace for. As a result of these problems, the optimum recommended wearing time was not achieved, which would have reduced any benefit of the brace. The main reason reported for this noncompliance wearing the brace was toileting as a result of the design of the brace shorts, a problem that was exacerbated by the fact that several participants could not remove or fit the brace independently.

### **2.7 Trial satisfaction**

From the final set of questions, the theme that emerged was that participants were happy with the format of the brace trial. This was in regard to the frequency and duration of the clinical visits and the questionnaires the participants had received.

*No, I think they the questionnaires ask the right thing really, they are simple to answer, I have not found them simple to answer as I've been in a lot of pain last month with my IBS but normally, I'm ok with them. (P4) The questionnaires are simple really; they ask sensible questions and the number of visits is fine also. (P2)*

The answers from the remaining participants who reached the 6-month treatment point also indicated they were happy to continue with the trial. Participants gave generally brief responses to these questions; they did not expand or give any extra information to the questions asked. Participants indicated they were happy with the format of the trial and felt the questionnaires were appropriate; they also indicated they were happy to continue with the trial.

### **2.8 Interviews with the participants who had withdrawn from the trial**

The interviews with the participants who had dropped out of the trial were carried out over the telephone and recorded with their permission; consent forms were sent out in the post prior to the interview. The interview schedule followed the same progression as the treatment group, with the initial questions focused on the participants' life before they received the brace. The participants indicated the primary complaint of living with scoliosis was their persistent pain.

*Erm, very bad, well to my mind it was very bad, but I'm sure there must be people who are worse. (P7)*

*Yes, yes I cannot, I can no longer go shopping for example, Christmas shopping for example is an absolute nightmare really, erm, you know the weekly shop, my husband has to do it now, the only time that I'm alright is if I'm pushing the trolley, it's almost like I can run then. (P8)*

The next set of question focused on why the participants dropped out of the trial. Participants provided answers identifying the primary reasons being the fitting of the brace.

*I could not wear it because I take diuretic tablets and I could not get the brace off and I kept needing to go to the loo all of the time. If something like that could be devised and designed with erm, with easier fittings because I need to have somebody to help me get in and out and quite often, they could not understand it either. (P7)*

Furthermore, one participant indicated the reason they dropped out of the trial was due to the bracing causing them even more pain.

*I did not wear the brace for any length of time because it hurt my body, that might sound silly but it actually hurt; it hurt my stomach for example, it just seemed altogether too tight and pulling me, although when it was on for a short length of time it was quite good. (P8)*

In summary, it was apparent the design of the brace and its practicalities were the main factors for these participants dropping out. Furthermore, the brace also led one participant to believe their pain increased; however, as stated earlier in this study, this participant was only included due to the small study numbers and at the specific request of the consultants.

### **2.9 Discussion**

The primary aim of this study was to use a qualitative approach to explore the patients' experiences of living with scoliosis. Furthermore, the secondary aims of the study were to obtain rich and in-depth qualitative information with regard to how the brace affected the scoliosis, together with the functionality and practicalities of the brace design. The results and themes generated from the semi-structured interviews indicated that the primary experience of living with scoliosis is one of persistent pain and limited activity, with all participants who were interviewed identifying these two factors as the main issues. Furthermore, the results from the interviews also identified and highlighted design problems and limitations with the brace shorts that were previously unknown. As the brace has previously only been used on adolescents [9, 23, 24], the problems experienced by adults with regard to the design of the shorts were previously unknown. It is unclear why older women had a problem with the design when this issue has not to our knowledge been reported elsewhere.

An additional result from this study was the identification that the literature on adults' experience of living with scoliosis is very sparse. The data obtained from this study contributes significantly to the gap in knowledge with regard to the experiences of living with scoliosis and its effectiveness. From the responses participants gave, the brace did offer a reduction in the participants' reported pain and allowed them to take part in a wider range of activities. However, for a more definitive conclusion and indication as to how successful the brace has the potential to be, this study would need to be carried out on a larger sample size. Furthermore, the participants would need to be willing and able to wear the brace for the recommended time and would need to fully match the study criteria.

Furthermore, as the interviews provided a greater reflection of the experiences of living with scoliosis, it is suggested that each participant should receive a minimum of three interviews in any future trial. The first interview would be scheduled at the beginning of the trial, one in the middle and one at the end of the study. The implementation of three interviews would also allow for a more in-depth comparison to be obtained, as the interviews would be more frequent and the participants would be able to give more detailed descriptions of their experiences of living with the brace.

*A Mixed Methods Study of the Experiences and Effectiveness of a Soft Brace for Adults… DOI: http://dx.doi.org/10.5772/intechopen.92387*

The information obtained from the qualitative interviews allowed for a greater understanding of patients' experiences of living with scoliosis that the questionnaires failed to capture, such as problems with the brace and the extent to which the brace was helping with their pain and activity levels. Furthermore, Participant 4's answer to the set of questions regarding trial satisfaction also showed how some patients found it difficult to that they experienced was due to IBS or scoliosis. This qualitative study also revealed that patients' experiences of pain had a limited effect on the amount of activity they could do due to their degenerative scoliosis.
