Theme 1: The Ulcer

Without exception, all study participants were keen to describe the ‘journey’ of their ulceration with the researcher. This generally included any associated family history, details of their co-morbidities and the cause, location and duration of their leg ulceration.

4.2.2.1 Family History.

Three participants reflected on the history of leg ulceration in their first order relatives. A family predisposition, for these participants, was significant and had led to them feeling susceptible to the development of leg ulcers throughout their life. When ulcers had subsequently developed they seemed to refer to them with almost resignation. Mary reflected:

‘All my mother’s sisters had it and me [my] mother...runs in my family it does with us.’

Mary

Marg similarly reflected on her family history and spoke of her mother’s long-standing ulceration and them managing the ulcers at home for periods of time:

‘My Mum had them and they’ve told me as [that] they can be hereditary...have you heard that? She worked with hers (...) the treatments that I‘ve seen, they used to soak hers in this purple stuff, but they did seem to clear....you know, and she’d get another one (...)

sometimes we’ve doctored them on our own because she’d seen how they’d done it them many times.’ Marg

For the remaining participants (6), ulceration did not reflect a family predisposition.

4.2.2.2 Co-morbidities.

Co-morbidities were common. Three participants reported no co-morbidities, three had one and the remaining three had two or more. The co-morbidities were rheumatoid arthritis (RA) (2), osteoarthritis (OA) (3), cardiovascular disease (CVD) (1) and sight problems (2).

Where participants suffered from co-morbidities, their underlying conditions had a tendency to exacerbate their ulceration but despite this, having other conditions also appeared to make the participant more tolerant of the ulcer symptoms. Tom (76 years), who was extremely debilitated by his RA and had extremely severe bilateral ulceration, reflected on his ulcers as simply being a nuisance. In contrast, Marg, who other than her leg ulcer was in good health, was devastated by the impact of her leg ulcer symptoms on her daily life.

4.2.2.3 Cause, location, duration and description of ulcers.

All participants described the development of their ulcers; five were able to describe the actual incident which had caused the initial wound, which then progressed to become ulcerated. Ellen (80 years) reflected on two incidents which initiated an ulcer developing:

‘I had a shower and I was getting out and I knocked my ankle (...) I was going past this chair and there was something sticking out and I gashed all up me shin.’ Ellen

For Steve (39 years), many years of intravenous (IV) drug abuse had culminated with him injecting heroin directly into his lower legs, as this was the only place he could gain access to his badly damaged venous system. This had resulted in him developing severe bilateral leg ulcers.

‘When I was injecting under the skin, in little veins and I was going in capillaries as well (...) just underneath the skin...it’s like acid just burning underneath my skin, that’s how it all burned and fell into the big, deep holes.’ Steve

The participants who were unable to describe the specific cause which led to their ulcer developing (4), reflected on their uncertainty about why they had started and a fear that they would recur as unexpectedly when they healed.

‘Oh no, it must of [have] just come (....) I’ve got bad veins, I suppose that started it.’

Sam

Of the nine participants, six had a history of bilateral ulcers. Two reported ulcer recurrence in exactly the same location at each recurrence, whereas the remaining (7) reported ulceration recurring in a variety of different locations on their lower legs.

‘It’s always like this and always in the same place.’ Marg

The patient participants disclosed a range of duration for their ulcers; most (7) had experienced at least one healed episode, although not all. For some, the healing was extremely slow and a very frustrating process. All participants reflected that long periods of their lives had been ‘taken over’ or defined by their ulceration.

Some participants reflected on periods when they were able to self-manage their ulcers, often when they initially occurred, before eventually having to accept that professional intervention was required as a result of the wound deteriorating or an infection developing. Steve spoke of periods when he completely avoided the required clinic visits, reflecting that he was ‘non-compliant’ when the situation just became too much for him:

‘You just go through mad stages [....] I’d phone and say ‘Sister, I don’t need to come today me [my] bandages haven’t leaked through’...’are you sure cause we can change them or come to you?’.... I’d say ‘no, you’re alright, they haven’t leaked through or nothing’ but I’d done it myself, it was just a stage I went through with them, just trying not to have to go [...] three times a week, I mean, come on, it’s tedious isn’t it. They put them on on a Monday, you go up Monday afternoon, you’ve got Tuesday all day and I’m back there on Wednesday, so it’s only a day and a half they’re staying on and then they’re being changed.’ Steve

Most of the other participants had experienced some healed episodes (7). Steve, however, had never experienced healing and reflected on the time it was taking for the healing to take place:

‘God, they’ve been doing it, this Christmas it’ll be just over about 14 years. It’s just been millimetres, millimetres all the time just going in, very, very slow. Cause I’ve not been

anywhere, not done nothing for 12, 13, 14 years. All me [my] life’s been is Doctors and hospitals and nurses and surgeons…. you know. It does get to you, you know, but I haven’t let it get me down and I’ve stuck with it and, …... yes, I’m doing alright now like, I’m getting there, it’s getting there.’ Steve

their ulceration simply taking over their lives.

Recurrence of an ulcer following an episode of healing was seen as both frustrating and disheartening.

‘Off and on, I must have had them at least a dozen times.’ Sam

‘I think I’ve had about three or four, but the last two have been horrendous.’ Marg

The interviews revealed the very personal ‘story’ of leg ulceration. Comments were consistent and unprompted by the participants and provided a rich insight into the person behind the ulceration, the extent of the impact of CVLU on their daily life and provided the background to their personal journey.