Interviews.

Face-to-face, semi-structured interviews were conducted by the primary researcher (LK). The recorded interview was guided by an interview guide and additional field notes were taken. The interview guide (available as Supporting Information) was derived from previous literature [14, 37–39] and expert advice. Questions and prompts during each interview were tailored to describe and facilitate the participant’s reflections and lived experience, specifically seeking information on their experience with the program in the clinic (e.g. treatment, care received, management strategies outside of the clinical setting and perceived progress of their condition) and personal considerations (perceived assessment of management success, challenges, control over their condition and subsequent impacts and potential changes).

Theoretical framework COM-B model linked with TDF.

The COM-B model is an acronym for Capability, Opportunity and Motivation factors that may affect Behavior. The model posits that behavior is influenced by these three core constructs and any change in health behavior will be dependent upon associated mediating factors [40]. The COM-B model’s constructs are:

• Capability–(Physical): Physical capacity to perform the behavior e.g. skill or strength;
• Capability–(Psychological): Psychological capacity to perform the behavior (e.g. knowledge or comprehension);
• Opportunity–(Physical): Opportunity afforded by the environment involving physical ‘affordance’ and resources;
• Opportunity–(Social): Opportunity afforded by interpersonal influences, social cues and cultural norms that influence the way that we think about things;
• Motivation–(Reflective): Reflective processes involving plans (self-conscious intentions) and evaluations (beliefs about what is good and bad);
• Motivation–(Automatic): Automatic processes involving emotional reactions, desires (wants and needs), impulses, reflex responses.

Another theoretical model Theoretical Domains Framework (TDF) is an evidence-based framework that has several domains encompassing behavior change techniques (Table 1) including affective and emotive constructs [41]. The TDF complements and expands the COM-B model to identify and evaluate techniques of behavior change for application or later implementation. The COM-B and TDF approaches have been applied in a wide range of healthcare research such as smoking cessation behavior, health professionals’ adherence to low back pain guidelines, falls prevention program and adherence to hearing aids [42–45]. In the current study, the COM-B model is mapped against the TDF domains (Table 1) to aid the interpretation of findings.

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Table 1. Mapping of the COM-B model to the TDF constructs relevant to the study.

https://doi.org/10.1371/journal.pone.0219875.t001

Data analysis.

All qualitative data were de-identified and transcribed before importing into NVivo12 [46], a qualitative data management tool to facilitate analysis. Initially, the qualitative data were analyzed using thematic analysis [47] through an inductive iterative process whereby text segments with possible common meaning are identified in the transcript, coded and sifted. During this process, attention to the nuances of the dialogue and deeper insights are drawn from the data and emerging themes are proposed [48]. Using investigator triangulation to enhance trustworthiness (credibility) of the findings, a second team member (AB) also examined the data independently, and the emerging themes and areas of agreement /disagreement were discussed with the primary researcher (LK) [47, 49].

Following thematic analysis, the findings were interpreted deductively and reflected in the light of the COM-B model and TDF component constructs [40, 41]. Themes and outcomes were determined by consensus between the two researchers before sharing with other team members. These were further categorized as enablers or barriers.

Capability- physical.

No physical capability enablers were identified, indicating that the long-term impact of CO is debilitation, namely lack of or reduced physical capacity (Table 3). Participants, however, identified numerous barriers including a reduced physical capacity to walk and move due to lower limb CO and a heightened fear of falling. These factors negatively impacting on their mobility, independence, lifestyle choices, self-efficacy and ultimately their health-related quality of life. The concern with severe physical limitation as a barrier was prevalent throughout the study. “The biggest trouble I’m finding with the legs is that they feel heavy and I can’t walk a long way now” (P6). Everyday activities such as grocery shopping were reported to be challenging. This is objectively reflected by a spouse of one of the study participants:

She can only walk 50 meters. She gets pain and sits down. We find it easy to go to places with free wheelchairs … it also means her life is pretty much housebound whether she likes it or not. We have to hire a wheelchair to go to the zoo, go to the shops or anything like that (P4’s spouse).

Over time, there was a growing need, and sometimes unease, with the use of mobility aids (e.g. wheelchair, or walker). One of the participants (P2) expressed frustration with “I hate going in a wheelchair”. Ambivalence about using mobility aids was commonly discussed:

I am just too young [50 years old] for a walker (P4).

I don’t feel so steady on my legs anymore and I feel like I am going to fall over. And if I fall over, my knees are so sore I can’t kneel to get up. If I am down, how am I going to get up? So, the walker does help get a bit more confidence walking with it (P3).

As identified in the previous comment, a fear of falling was raised throughout the study. Hence, the participants have adapted or altered their daily activities, or even stopped doing what they used to do. As one described his daily routine as “Because you can’t move, mine goes from sitting to sleeping, then sleeping to sitting” (P5). Others demonstrated how CO can be such a debilitating condition in the long term, leading to a loss of independence and physical capacity. “I can’t lift my legs, so my friend comes in every day and helps me to get into bed” (P2) and “Things like playing tennis. I know that’s impossible now. I just can’t do it” (P6).

Unsurprisingly, given their physical limitations from CO and multiple comorbidities (including obesity), these participants struggled to apply or use the medical appliances and aids (e.g. stockings provided to manage their lower limb CO). P3 described in her earlier years of experience with stockings “very hard to put it on…I persevered for a few months, but it is hard”. This perspective has a psychological aspect, which points to another construct (capability-psychological) of the COM-B model.

Capability- psychological.

Enablers and barriers associated with psychological capability as outlined in Table 3 relate to knowledge and awareness in the study were related to attendance at the CO clinic. These translated into comprehending and applying knowledge of CO, self-management strategies (e.g. bandaging, massage, wound care and exercise), monitoring for infection, and requirements of ongoing care of their legs. In contrast, a barrier expressed by all study participants was the lack of practical knowledge and awareness by medical practitioners on ways to treat their CO and on referral pathways, leaving them in most cases solely reliant on the clinic.

Opportunity- physical.

This COM-B model construct looks at opportunities that are afforded by environmental context, resources and social influences (Table 1 and Table 3). There were more barriers than enablers identified.

Physical enablers discussed by all the study participants included that the CO treatment program was tailored to their needs and preferences and that they had access to most medical appliance options. Barriers identified in the interviews included physically accessing the hospital clinic. Those who drove to the hospital mentioned that it was a challenge to access hospital disabled parking due to its limited availability. Those who used public transport reported that the distance between the bus stop and the clinic was too long and walking that far was not easy. Another identified barrier discussed by few participants was their difficulty in finding appropriate clothing and safe footwear when they ventured outside of their house.

Opportunity- social.

Social influencers including a positive health provider-patient relationship, continuity of care, and a supportive spouse/partner were important enablers suggested. All the participants acknowledged the clinic and health professionals’ expertise in identifying and addressing their CO, providing flexible and tailored solutions. This was particularly relevant when study participants were actively engaged and adhering to recommendations at the clinic. Besides, having the same health professional in attendance at the clinic all the time was reported to be “psychologically relieving” (P5).

Social stigma was identified as a barrier to adherence to therapy. Fear of being ridiculed when wearing medical appliance in public such as “He’s just wearing bandages so that he can get a seat [comments by other passengers in the bus]” (P6) was recounted by one study participant. Associated with these comments was the frustration about “having to explain it [his condition] over and over again” (P6) to acquaintances. This effort could reflect an act of dealing with social pressure and maintaining social acceptance (Table 1 and Table 3).

Motivation- reflective.

The third construct of the COM-B model is motivation, which includes reflective and automatic processes as well as associated enablers and barriers. Reflective aspects relate to beliefs and intentions while automatic responses entail unconscious desires and impulses.

Whilst participants expressed beliefs that therapy helped with reducing swelling in their legs, their pessimism and resignation towards recurrent setbacks were barriers to their well-meant intentions. Therapy helped to reduce the size of their legs and aided them to continue to function (i.e. attending work, socializing and so forth). This was largely related to persistently wearing stockings in the early years of the condition.

Over time, with their reduced physical capability, their sense of self-efficacy was gradually eroded and evoked a sense of resignation with an increasing reliance on their spouse and family. P6 vividly described this:

My self-confidence is diminished due to my physical limitations when previously I walked a lot without tiring … I don’t feel safe driving because I don’t feel I can lift my legs to get to the pedals [brake] quickly enough if someone came in front of me. She [spouse] always has to do the driving and even when she is not feeling up to it [unwell]. I can’t help her with that because I don’t feel comfortable.

All participants expressed a lack of control and resilience over their condition because they did not see a cure. Consequently, highly reported was a degree of resignation to just accept the condition and live with it.

I’m controlling it to the degree, where I don’t have to stay in bed all day. Like I control it to the point where I live a life but I can’t control it to a point where I’m going to cure it or I’m going to get better. I don’t know whether it’s possible to live that…There is no cure so there is nothing you can do (P1)

“I’d say I tolerate it [CO] as I don’t have any choice. The legs haven’t really got any worse, but it is hard to say I have got control of it” (P6). Consequently, motivation towards therapy, including attending the clinic and accepting new or alternative treatment options declined.

Motivation- automatic.

There was a gamut of emotive enablers and barriers displayed that were less conscious. On the one hand, participants expressed a compulsion to feel competent in fulfilling their social role with their family (e.g. as a grandparent, or spouse; striving to stay positive) and a yearning for independence was expressed.

When you are doing things for yourself, it’s a big plus (P2).

I’d rather do it myself [drive to the hospital]. I would still like to be independent (P3).

My biggest thing is I like to be independent and keeping everything under control makes me happiest because I am not looking for great outcomes or anything except maintenance. Maintaining what I’ve got now (P5).

On the other hand, having CO over a long period has had both a reported physical and an emotional effect and toll on study participants. While the physical impacts have been explored throughout, for other participants its impact was an inhibitor, namely that CO “changed my whole state of mind” (P2). Emotions expressed and detected from the interviews included emotional pain, depression, fear, and anxiety; they were seen as having a long term impact. “Seeing something visually can affect you emotionally…. Hurt, I look and think I used to [be] called elephant legs when I was in school” (P4).

Interestingly, utterances by the male participants were inclined to talk more often about “the legs” and rarely as “my legs”. In addition, weight was associated with the legs and not associated with their body weight despite participants having higher than average Body Mass Index (BMI) (Table 2). Hence, there appeared to be a coping strategy with a disembodiment of their legs and body weight in their comments. In relation, diet was not uttered during the interviews as a strategy to manage their CO. Only one of the six participants had current obvious intention to manage their CO and mentioned goal setting and CO action plan.