Participants
Participant descriptive characteristics are outlined in Table 2.
Ongoing back pain disrupts all aspects of life
During interviews, participants were asked to describe their experiences of living with chronic back pain. Common responses reflected the severe, ongoing nature of pain, which was often described as both agonising and emotionally overwhelming.
I was in terrible agony. I […] couldn't even sit down for five minutes without being very uncomfortable. I'd be in tears with the agony. (Helen, age: 65)
You get sick of the pain, and you get sick of the problem, in general. It just starts to grind you down. (Carly, age: 49)
Other participants highlighted the unpredictable and often fluctuating nature of their pain.
Some days it's really bad and other days it's not so bad […] and then, all of a sudden, it'll be gone, but there's always a twinge there, there's always some pain.
(Karen, age: 66)
Others described the effects of physical and behavioural triggers, including the detrimental effects of daily activities.
I (try to) control my pain. (But) yesterday, I wore bad shoes, and today I've got a really bad back. (Helen, age: 65)
If I do too much of rock and roll dancing or exercise, I can find the next day my back is screaming. (Helen, age: 65)
Bending over tends to be […] an issue. If I slouch or bend forward it tends to aggravate. (Barry, age: 54)
Almost all participants reported that back pain imposed physical limitations on their daily activities, including interacting with family, friends and work colleagues. For example, Henry stated that he could no longer play with his kids because of pain, while Greg reported that pain impacted on his ability to undertake physical work, such as climbing ladders and lifting heavy objects, which made him feel dependent on other people. Everyday activities were affected during an acute back pain flare-up, including being able to stand upright, walk and go to the toilet.
I find it almost impossible to stand straight or walk purposefully when back pain flares-up. (Fred, age: 68)
[When] my pain level increases, […] my activity level just reduces terribly. (Carly, age: 49)
I couldn't kick a ball or throw a ball.I couldn't play with my kids[...] I didn't feel like I could sit at the table. (Henry, age: 48)
Other participants described how back pain affected their social activities, such as spending time at the park with friends or attending social gatherings, as they were unable to sit comfortably or drive to social events.
Sometimes socially, because if I was sitting on the ground, I couldn't sit on the ground properly (because of pain). (Betty, age: 51)
[I] can't drive because of pain, so I can't go anywhere. I can't drive. (Carly, age: 49)
Some participants described not wanting to talk about their back pain with friends and family. Participants seemed to be particularly concerned about a perceived negative reaction from others if they appeared to be in pain and so described ‘putting on a brave face’ to look ‘happy’. Many participants reported that a lack of understanding from family and friends contributed to their feeling of a perceived lack of support. Many felt that having a long-term back pain problem, compared to a short-term injury, made it hard for their family, friends and work colleagues to understand their experiences.
For me, it's just really depressing. I just pretend to be happy, and be nice to people, which I am, but it's all just pretending, because I have to. It's nobody else's fault. I can't take it out on other people, because of the way I'm feeling, so it's all just putting on a brave face, really. (Ivy, age: 55)
You're supposed to tell your family and friends, how you're going, but a chronic problem is something that people don't want to know about, anymore. Acute (pain) is much easier. People feel more sympathy, and empathy for you, but when it's chronic, it's like, "Oh my God, you still got that problem." That's how I've experienced it, anyway. (Carly, age: 49)
In contrast, some participants reported the benefits of having ‘positive’ people in their lives and actively sought ways to enhance social engagements with people who they felt listened to them.
Being surrounded by people who positively reinforce positive behaviours. That's important. (Henry, age: 48)
Yet for others, the social impact of chronic pain had negative effects on their emotional wellbeing. Many participants described feeling down, worried and stressed, which was often linked to concerns about their futures.
The pain probably more depressed me, and it affects you generally because you feel that "I can't do this" or "I can't do that". (Helen, age: 65)
I definitely have had times when it's been bad enough where I've felt pretty down and worried about, you know, dealing with pain for all this time and what that will mean in the future. (Anna, age:36)
Uncertainty about their future pain exacerbated feelings of stress and worry, as participants reported feeling vulnerable, hopeless and lacking control of their condition. Uncertainty about the cause and prognosis of their back pain exacerbated feelings of stress. Jenny reported being constantly preoccupied about her back pain, and Helen described not being able to do all the things she wanted to do. Others, such as Alex and Barry, reported that they felt that their pain would ‘never end’ and were unable to see an alternative, pain-free future.
You get more stressed about it, because you don't know what's causing it, and it just seems to make you feel a lot more vulnerable, thinking, "Well, what is causing this pain?" And you start to worry, and the worry doesn't help, that makes the pain worse I think. And can make you feel more depressed. (Jenny, age: 48)
What's this going to be like in another five, ten years? How much worse is it going to be? (Barry, age: 54)
In contrast, some participants reported a sense of acceptance of their long-lasting back pain. Karen’s description of ‘learning to live’ with the back pain may suggest a coping or adjustment mechanism.
I'm in pain a lot, I'm not depressed about the pain or anything like that. It's just something that I've learnt to live with. I think, sometimes it gets you down because you think, "Oh I wish it would just go away." But, because I've had it for a very long time, I just kind of battle through with it. (Karen, age: 66)
Personalised support and therapeutic alliance are important
Participants recounted different strategies they used to help manage their pain including informal strategies and those led by health professionals. Professional-led strategies included seeking advice and treatment from a GP, chiropractor or physiotherapist. Other informal strategies included discussions with family and friends, as well as self-medicating with non-prescribed analgesia.
Support from GPs included prescriptions for strong analgesia and /or referral to other health professionals such a physiotherapist. Using prescribed medication such as opioid-based analgesia was reported positively to offer some relief from pain and allowed patients to regain some level of ‘normality’ through being able to participate in activities such as walking or getting to sleep at night.
After the seven years of having the constant pain, I went to my doctor and he said, "I want to try you on Tramadol," and I was a bit nervous about it at first, but it seems to be the only thing that really did kick in eventually and help. (Jenny, age: 48)
I have to take painkillers before I go (for a walk) and painkillers again when I get back. It’s the only thing that seems to really help me. (Ivy, age: 55)
Despite the positive short-term effects of analgesia, others indicated a preference to seek ‘hands-on’ treatment from a physiotherapist or chiropractor, which included massage, spinal manipulation, stretches and exercises.
After checking on my response to the exercise I was then given a very specifically focused massage with some gentle manipulation type movements. (Mike, age: 76)
I'm not into medication. That's just a band aid for me, so I'd rather avoid it. I’d rather go to the chiropractor or physio or something like that. (Carly, age: 49)
Feedback from some participants suggested that chiropractic treatment and physiotherapy offered longer-term benefits than medication and that adhering to regular or ‘maintenance’ exercises helped to improve their pain.
I go [to the chiropractor] for maintenance because my flexibility and my ability to keep moving improved with treatment. (Greg, age: 65)
Positive engagement in clinical encounters by participants appeared to be closely tied to the perceived qualities of the practitioner. Such qualities included being perceived to be trustworthy, personable, friendly, positive, a good listener, approachable, caring and helpful. Participants valued practitioners who showed a genuine interest in their condition and demonstrated understanding of their personal circumstances and difficulties.
(The) practitioner … understands my situation, my individual situation, and (was) motivated to help me through that. It's very good having a trust relationship with your practitioner. Pretty important that I get treatment that's specifically for me, his manual therapy was targeted. The treatment and the whole interaction was very specific for my problem and personalised, to me as a person. (Diana, age: 43)
I just found that he understood what I was going through as well. If you feel that someone can listen to you, and they feel that they can help you, then it's nice to know that there's someone there that you can turn to if you're in that pain, and you feel that someone is actually listening to you and understanding it. (Jenny, age: 48)
The first thing about the practitioner was the relational ability. It's like he did this wonderful connection with me as a person. And then stayed relational all the way through. (Mike, age: 76)
Personalised tailored advice and education about various exercises provided by the practitioner was also viewed positively. Significantly, conversations with an encouraging practitioner helped individuals to better ‘come to terms’ with, adjust to and accept their pain and uncertain future.
Yeah, definitely, he encouraged me to stay active even if it was feeling painful, but just not to push it too far, but still do things. […] Yeah, definitely, his encouragement helped me a lot. (Jerry, age: 53)
Well the treatment did help me, also his advice was really good. You know the guy that I saw finally pushed me to get a standing desk rather than sitting down at work all day. (Henry, age: 48)
The guy treating me talked about this too, which helped me come to terms with it. I've got more acceptance to it, and I've got used to it. (Helen, age: 65)
Despite these positive reports, some participants expressed a dissatisfaction with treatment and talked about the unhelpfulness of both the therapist and the therapies used. However, during these discussions, participants also echoed the importance of being understood and taken seriously by health professionals.
Oh, I suppose there would have been about eight or ten clients in his big treatment room, and he was just going from one to the other, and you didn't have the same one on one interaction, and so it didn't have the same encouragement, and, from where I was at the time, I just felt I was one of the numbers. (Kevin, age: 70)
(I’d) often visit the GP, they get so sick of you. (Carly, age: 49)
Other participants who maintained a more positive outlook about their pain expressed the idea that managing their pain was within their personal control. As a result, rather than seeking professional help, many described their pain management as being their own responsibility.
Long term, well, it's really me taking responsibility for myself, not relying on other people to fix me [… I] just try to remind myself of what I need to do such as the pacing, and looking after myself, from a nutrition point of view, being mindful, and trying to be positive. (Carly, age: 49)
[The next time I’m in pain] in the future, I would try and self-manage first. (Betty, age:51)
MoodGYM lacked relevant, personalised and tailored support
Participants expressed mixed views about the effectiveness and relevance of the digital health MoodGYM program (Table 3 describes the MoodGYM program modules). Positive experiences highlighted by several participants included that the program content provided the emotional support they were seeking, as well as provided access to information and reassurances about their emotions and (low) mood. Yet many others expressed negative experiences of MoodGYM, questioning its relevance to their LBP experience. Specifically, that the program content failed to address their specific physical needs (i.e., advice for managing the symptoms of back pain) and psychological needs ( i.e., support for the emotional and social consequences of ongoing back pain), and the delivery method was reported as being impersonal (i.e., no human interaction).
Positively, the program seemed to help some participants with the idea that feeling emotionally down was a normal reaction to chronic pain. The resulting reassurance enabled some to recognise their feelings of depression.
It made me realise that it is quite normal to feel certain emotions when you're not feeling 100%. Yeah, so it was good. It just reassured me that I wasn't losing my mind, basically. (Jenny, age: 48)
I think [MoodGYM] was good to get your head around how you feel.I never took any notice of [my emotions]. I probably was depressed, and I didn't realise it. (Helen, age:65)
The resulting awareness and reassurance about how they felt enabled some participants to take positive steps towards adjusting their daily activities. For example, Emma seemed surprised by the support and advice that she received from MoodGYM, which helped her better understand her thoughts and emotions. This ultimately enabled her to better navigate her day-to-day life an feel in control of her mental health.
It was, actually, really brilliant […] there was some seriously great takeaways […], like, what you think about is what you feel, is probably the biggest one. [...] I think probably the fact that, how little I knew about how to control my mental health. It's quite a revelation, learning that stuff, and then applying it in my day-to-day life. (Emma, age: 35)
Similarly, Helen’s account reinforced the idea that participants could be in control of their thoughts and moods, even in the context of ongoing pain. Managing moods and being positive appeared to have important implications for their social relationships.
It just brought it to the light to me, I have control on my thoughts and moods, even if the pain was there. (Helen, age: 65)
I think it's made me more positive. Easy to get on with a bit more. People around me don't have to cope with my moods. I think it has done a lot of good for me. (Helen, age: 65)
Despite some positive accounts, most participants reported negative experiences with MoodGYM – often citing the program’s lack of personalised (back pain) treatment and support. During these discussions, participants described the lack of back-pain-specific content, which made it difficult for participants to relate to the presented case material. Of importance was the idea that MoodGYM did not seem to address their primary concern, namely managing back pain.
Maybe they could be specific about someone who is actually going through [back] pain… being very specific about it. (Jenny, age: 48)
In terms of the relationship [of MoodGYM contents] to the back pain, it wasn’t clear. (Betty, age: 51)
Participants described difficulty relating to the apparent (dominant) focus on depression and without addressing the experience of living with chronic back pain. Karen, for example, described herself as not being depressed about her back pain and thus did not ‘fit’ into the program’s categories – a feeling echoed by other participants:
I found it [MoodGYM] okay, except that I didn't feel that I fitted into a lot of the categories, because even though I'm in pain a lot, I'm not depressed about the pain. (Karen, age: 66)
It probably didn't add any value because I wasn't feeling too depressed about the pain when I did Moodgym. (Barry, age: 51)
Lack of personalised (back pain) treatment and the focus on depression led many participants to suggest that they would not recommend MoodGYM to others with chronic back pain. When asked about the sorts of things they would like to see in an internet-delivered back pain program, some, like Fred, expected the program to give him a visual representation of the causes of their pain. Betty and Alex wanted a description explaining the connection and impacts on mental health from chronic back pain.
A computer program, it would have to be quite graphic. It would have to explain the causes of the pain. And almost educate me… the way pain manifests itself. What it does to the brain. What it does to the chemical composition in your body. All that sort of stuff. (Fred, age: 68)
I guess linking pain to mood. Like, the impact pain has on you, how that changes so you can recognise yourself [in the program], why a change in mood. Maybe how to manage it, if it hits. You know, different strategies to be tried [when experiencing episodes of back pain]. (Betty, age: 51)
Maybe the program, if they would have been a bit more direct about that link [between back pain and low mood], it might have helped a bit quicker. (Alex, age: 29)
MoodGYM lacked personal human connection and interactivity due to its computer delivered format. The importance of having personal human interactions with health professionals came through strongly, as participants cited the importance of building a relationship with practitioners when discussing their experiences of MoodGYM. The impersonal aspects of MoodGYM were further compounded by the reported technical difficulties of internet-delivered programs.
In terms of, I guess an online sort of thing, I guess personally, a personal interaction is probably more influential for myself than say going online and looking at a computer… because, you can't really ask it questions and clarification, if you know what I mean. Whereas if I'm talking to a chiro or a physio I can say, look, okay, am I doing this right. (Barry, age: 51)
I'm not that tech savvy. I don't even know when I started, I think I did it twice, and then I don't even know whether I saved it, or what I did, and ... Yeah. Being older generation, I didn't grow up with all this technology. I’m not interested in anything on a computer. I believe in face to face. Well, I like face to face stuff. I don't like, sort of, self-directed learning, or guidance from a computer screen. (Carly, age: 49)
The need for relevant support, that reflects the physical, emotional and social experiences of people with ongoing back pain, was not met by MoodGYM. The expectation and preference for a human interaction with an understanding and personable support mechanism, that provided tailored advice and treatment, was not provided by MoodGYM.