Eighteen in-patients admitted for a diabetes-related foot complications and a history of a LEA agreed to participate in the research project. Of the 18 participants, three were excluded due to a family member or a partner being present during the interview and spoke for the participant. This meant the data collected did not truly reflect the patient’s perspectives. A final sample of 15 participants were examined in this study. As presented in Table 1, most (86%) participants were male and Caucasian, with a median age of 66.4 years ranging from 44–80 years. The median duration of diabetes was 25.2 years, ranging from 12–40 years. More than half of the participants had undergone a previous amputation with 86% being low-income earners or retired and 73% living in metropolitan Adelaide.

Table 1 Participant characteristics

Analysis of the data identified two overarching themes, intrinsic and extrinsic factors each with associated subthemes (Table 2). Intrinsic factors related to how participants perceived their diabetes and lower extremity amputation, from their individual perspective. The subthemes for intrinsic factors included identity, ambivalence, denial, inevitability, and helplessness. Extrinsic factors related to a participant’s environment and external influences impacting their own health. The subthemes for extrinsic factors were resources, management of care, and rapport with healthcare professionals. The results below are organised around these themes and subthemes.

Table 2 Themes, and subthemes of patient’s perceptions of risk factors that contributed to their LEATheme 1: intrinsic factorsSub theme 1: identity

Identity of the individual was a factor that contributed to diabetes related LEA. One participant described occupational identity in terms of protecting themselves against diabetes related complications:

P15: ‘…there's a certain amount of image involved as well. If you get a guy like me, hard drinking, ex-army, down at the pub with all your mates "I'm tough, I can handle it." You never think of a bacteria bringing you down.’

Another participant expressed how occupational identity influenced how he managed his chronic disease:

P13: ‘I’ve always worked as a FIFO miner, it’s hard to look after diabetes or feet when you’re in that environment.’

Identifying with the role of a father was also described. One participant reported how they wanted to hide their diabetes as they did not want to burden others. In doing so, they neglected diabetes self-management:

P10: ‘I didn’t tell anyone I had diabetes because I care a lot about my family and I didn’t want them to worry, I’m the father and I should look after them instead of them looking after me… I was careful about what I done at home and would eat things I shouldn’t or not check my sugars so no one knew.’

Participants also identified as being from a rural area and discussed this identity as a factor that led to their LEA:

P11: ‘I'm barefooted, I'm- I'm a country boy…when those ulcers started, I could of taken it a bit more seriously but I’m from the country so I thought I’d be fine.’

This was supported by another participant who reflected that P8: ‘In the bush I would just keep working and smoking, didn’t really worry about my health.’

The need to maintain a social identity of independence impacted some participants seeking help for diabetes foot complications:

P12: ‘I ignored it because I still want to be independent, I don’t want people to worry about me. I didn’t look after my diabetes because I was too stubborn and wanted to do things on my own.’

Maintaining a self-image of being healthy impacted how participants perceived risk from their diabetes. One participant stated:

P2: ‘It’s just about maintaining that image, even when people tell you about your health, you still think you can handle it. You still think you can do it. I can handle this. Other people can't, but I can.’

On the other hand, in some instances, participants prioritised others health over their own:

P2: ‘I always thought that there’s other people who would need it more than me, so I tried to not bother anyone with my diabetes.’

Sub theme 2: ambivalence

Ambivalence related to participants having the awareness of and knowledge about their diabetes, understanding the negative consequences of their actions, and yet acting to the contrary. For example, one participant reported that they knew they should be wearing better footwear, however because of the inconvenience chose not to adhere:

P11: ‘I probably could wear better footwear. At the moment I’m just wearing sandals because it’s easier and I can’t be bothered.’

Some participants perceived they didn’t need to change their current behaviours:

P2: ‘They (healthcare professionals) tried to get me to wear shoes when I had the first amputation, but I thought no I can walk, and I thought there's no need for it.’

Such sentiments were supported by another participant who reflected:

P10: ‘I know what I'm supposed to do, but I don't do it…I stopped seeing the dietitian, I've more or less stopped seeing the diabetes educator as well. Once they tell you what you have to know, again, complacency and I don't need to be told anymore.’

Sub theme 3: denial

Denial related to participants state of denial about their own health, which ranged from rationalising to ignoring to complete denial. One participant perceived they had good health outcomes despite having an amputation and accepted no responsibility for that outcome:

P11: ‘I think my diabetes and my health is really good except for this amputation which isn’t my fault anyway.’

For some, denial seemingly was as a simpler option as reflected by this participant:

P4: ‘I just ignored the wound. Put a couple of band aids on it and that was it. That's all, just easier.’

Other participants were able to identify and articulate they were in a state of denial about managing their diabetes. For one participant this was despite having good knowledge and education about diabetes:

P3: ‘I was in the state of denial that I had type 2 diabetes and the silly thing is I actually lectured and tutored medical students and science students. In diabetes, both type 1 and type 2. So, I knew it very well, even at the molecular level. I completely ignored the symptoms …just blocked it out or ignored it.’

P5: ‘It's just, I stuck my head in the sand, just hope it disappeared. I’ve had that kind of stuff explained, like the numbness and how to look after it and everything else. I just didn't prioritize it.’

For one participant, who had diabetes for more than two decades, it was about rationalising what occurs when living with diabetes.

P9: ‘I mean, I've been diabetic for 25 years and you do hear it, but you don't necessarily think about your foot like the first time that happens. You might take some notice of that and then …bad outcomes …because I'll find a way to rationalize what I've been told to work for me.’

In some instances, participants believed that such consequences (such as LEA) would not occur to them.

P13: ‘I thought that an amputation and even diabetes would happen to other people, not me.’

Sub theme 4: inevitability

Inevitability related participants perception that diabetes and its consequences were inevitable and therefore unavoidable.

P4: ‘Every single member of my family has got diabetes, every single one. And they all died because of it…so I'm next in line.’

For some participants the perception of inevitability lead to a lack of proactive behaviour in managing their personal risks:

P5: ‘I knew about diabetes back when I was 33 when it killed my brother. I still didn't learn anything about me, didn’t have myself checked out and that's where I went wrong. If I'd had myself checked out, then I could've, I could've avoided a lot of problems.’

The feeling of inevitability resulted in one participant feeling disempowered and impacted their motivation to engage in self-management strategies:

P10: ‘Since I had the amputation, I don’t think there’s anything I’ll change and there’s nothing I can do differently… it is what it is. I haven’t seen my podiatrist in a while… I’ve only got one foot they can do now since the amputation, and I’ll probably lose the other one anyway.’

Sub theme 5: helplessness

Building on from inevitability, helplessness related to participants’ experience of a sense of helplessness when confronted with diabetes:

P14: ‘Can't do it. I can't do anything for my diabetes. All I can do is sit at home and wait for the care mob to come and just do it.’

For one participant having had a LEA resulted in a belief that nothing else could be done:

P12: ‘I won’t be no different, my legs are gone now so you know, they might only see me once in a blue moon or whatever.’

The potential for a negative outcome from diabetes seemingly further fostered feeling of helplessness:

P1: ‘They (healthcare professional) told me about smoking that so bad, it's going to kill me. I knew about lungs and all that but not my diabetes or that it will kill me but I was like, Oh, god I don't care. I can't cope anymore.’

P11: ‘I mean what else could they do as far as my toe… nothing it was going to be cut off anyway.’

Other participants felt that their personal past experiences with diabetes lead to inevitable outcomes that couldn’t be altered as it was too late:

P2: ‘You start to realize that you need to manage your diabetes and look after yourself by the time you start losing your limbs, but then it's too late.’

Theme 2: extrinsic factorsSub theme 1: resources

Resources were identified as an extrinsic factor influencing access to health care which in turn contributed to LEA. Transport to attend healthcare appointments was an obstacle for participants from both rural and metropolitan areas.

P14: ‘I can’t see anyone else for my diabetes because I don’t have any transport’.

For some participants, difficulties with transport limited the variety of healthcare professionals that they could access.

P12: ‘I was joined up with the podiatrist through the Country Health, but I've got no vehicle, and I cannot access a vehicle to go there. We have no support to get anywhere so I only see the GP (General Practitioner) now for my diabetes’.

Two participants reported that outcomes from their diabetes including neuropathy and a previous amputation impacted their ability to drive and they had difficulty sourcing other means of transport.

P11: ‘It’s hard getting to appointments… I don’t have any transport. I’m not allowed to drive because I can’t feel the pedals with my diabetes.’

P4: ‘It’s hard to get to appointments when you have to rely on other people, with the leg off I haven’t driven for about two years now.’

Timely availability of appointments for healthcare consultation was an issue for those living in rural areas. Staff shortages limited not only access but also choice.

P8: ‘It's really hard in the bush…you don't get the appointments… you’ve got the need and we don't have the people with the qualifications to see the needs. In the bush you have to be satisfied with whatever doctor you get, there’s not any choice.’

Sub theme 2: rapport with healthcare professionals

Rapport with healthcare professionals related to several facets of service delivery and its impact on participants perception of their diabetes related outcomes. These included communication, trust, and support. The following quote illustrates a participant’s concern that the healthcare professional did not care about his diabetes.

P9: ‘More or less, he (GP) didn't give a mug about my diabetes.'

Some participants perceived that healthcare professionals were aloof and did not provide adequate explanation.

P12: ‘The GP didn’t explain to me how diabetes affects your feet, he’s quite detached. But I’m not sure how to go to another doctor.’

While others perceived healthcare professionals as being procedural and impersonal.

P6: ‘They basically sit down and ask you 10 questions, tick, cross, tick, tick, cross. Sign the sign list…you do get the general impression that give a sh*t anyway.’

For one participant, poor communication resulted in feeling unsupported, negatively affecting engagement in their own healthcare.

P5: ‘I have issues with the diabetes clinic. It wasn't a good fit, like personality clashes …I didn't feel supported…I had a diabetic nurse come in and talk to me, like I was the worst piece of rubbish, and was going off at me, but she wouldn't even listen to, you know, these are the circumstances. She just kept going and going and going at me. I just, I shut down. I just literally just shut down and thought, think what you want. I just shut down.’

Another participant however provided a different view. They expressed that because the onus for the negative consequences wasn’t placed on them, they perceived that the healthcare professional didn’t care.

P1: ‘I must admit I was very disgusted with a professional's attitude to what had happened to my feet. It didn't seem to matter much to them… I was never made to feel guilty as in, you wouldn't be like this if you hadn't, if you'd followed the rules.’

In some instances, the context in which the healthcare professional worked seemed to influence this. One participant expressed the difficulty in building rapport with healthcare professionals who were not based in their local area.

P9: ‘People are also very trust oriented in the country (rural area) and there’s no healthcare professionals that want to stay and live in the country so I’m also very hesitant to see anyone.’

Sub theme 3: management of care

Management of care related to participants perceptions of variations in how their diabetes care was delivered potentially contributing to negative outcomes. This is highlighted by the following quotes by participants who stated:

P1: ‘When I went to hospital that time I fell over, nobody ever bothered to check the bottom of my feet and so I ended up with a fairly large ulcer on the bottoms of both feet.’

P7: ‘I needed an amputation because I had an infection, and the infection wasn’t stopped by the doctors or nurses.’

Similarly, one participant perceived that not a single healthcare professional had provided adequate care for their diabetes:

P9: ‘I went to six doctors, four podiatrists and two specialists… yet no one did anything about my diabetes.’

Another participant provided an explanation for this. They expressed that due to the long duration of their diabetes there was a lack of education provided from their podiatrist.

P2: ‘The podiatrist didn’t really talk to me about diabetes and how this affects my feet but its most likely because I had diabetes for 30 years before I started seeing her.’