Table 2 Themes and sub-themes following coding of initial inductive codes against the World Health Organization’s Innovative Care for Chronic Conditions Framework
ICCCF Domains | Themes | Sub-themes | Exemplar comments from participants |
|---|---|---|---|
1. Positive policy environment level | |||
Develop and allocate human resources | Too little emphasis placed on integrating lymphoedema care into health workforce education and training | Lymphedema care not embedded into undergraduate physiotherapy curricula | “In my training lymphoedema care was not really covered. It was not. And I did not really come across it during my time of training in the first few years when I started work. It was when I was posted to this unit that I started seeing a lot of them and then I had to learn to be able to manage them. So I learned from my colleague. It was a learning process for both of us, so we had to find other sources to learn from” (Participant 1, Physiotherapist, Ghana) |
“So we have this one year, every year training programs, certificate training programs. So they come in and train the physios and train the occupational therapists. We train them for 10 days in diagnosis and management, all sort of lymphedema bandaging, how to take a measurement for sleeves, how to order sleeves and all these things” (Participant 10, Physiotherapist, India) | |||
The demand for lymphoedema care outstrips supply | “So it's the human resource, and because there are only two of us together with other cases we see, sometimes it's a bit of a challenge having to spend a lot of time and then… So we are now having to see a lot of lymphedema cases in a day just to be able to make time for other cases” (Participant 1, Physiotherapist, Ghana) | ||
“I think sometimes the treatment can be discontinued because they go back to their villages. And there's only one nurse in the village for many, many people. So some places there was one nurse for 500 people. So then the time of the nurse, and they're not all, they don't all work the same hours that we would work, for example” (Participant 17, Wound nurse consultant, Australia) | |||
Integrate policies | Bureaucratic health policies | Cumbersome and inefficient healthcare systems | “So most of these countries, they have what, like we would say the Ministry of Health or the Department of Health and everything goes through that. So you are a hospital. You want to buy some bandages, you have to put a requisition in. The bandage goes to this… The requisition goes to this man, this man looks at it. He sends it to this man who looks at it, who then sends it to the Ministry of Health to sign off on it and pay for it. And then it will come back again. So a very tedious process” (Participant 17, Wound nurse consultant, Australia) |
Under recognition of lymphoedema as a clinical care priority | “I mean because obviously, if you were providing care, and you don't recognize that this is a problem with the lymphatic system, and that you don't look at the strategies that you need to deal with it, you're not going to advocate with funders to provide the coverage for the cost of what you may need to do to try and help people with this problem” (Participant 19, Medical Physician, Canada) | ||
Financial Support | Too many other funding priorities leaves lymphoedema care in need of financial support | “Some of us (countries) have more resources to do it and some of us have a lot less but, it's still struggling with how you (Government) support these chronic problems in a model that is sustainable financially. That's part of the problem and the gap and the difficulty is finding funding for that, because there's just so many funding needs that are out there, that this would just be one” (Participant 19, Medical Physician, Canada) | |
Provide Leadership and Advocacy | Lack of political interest in lymphoedema care among other issues | “They've (Governmental Agencies) got to recognize it (lymphoedema), and if they recognize it, then they’ve got to come up with some means of funding to make sure that these policies get in place and that they are helping people to implement them, because it's all well and good to write a policy but, if you don't develop the strategies to help people to implement it, it's not going to happen” (Participant 19, Medical Physician, Canada) | |
Support legislative frameworks | Lack of regulatory frameworks for lymphoedema care resourcing | “Once you get people (Governmental Agencies) to recognize that (lymphoedema care), then you probably will develop the strategies and the regulatory bodies that may be necessary to provide resources or arrange for resources or an approach” (Participant 19, Medical Physician, Canada) | |
2. Health care organisation level | |||
Organise and equip health care teams | Building healthcare professionals lymphoedema capabilities | Grassroots lymphoedema capacity building | “We wanted to develop a train-the-trainer model, so we could empower the people there to basically take care of their own, and provide them the necessary resources and the education. And then phase ourselves out, essentially, as they became independent with the clinic side of things. And it was a very challenging, but very wonderfully rewarding program to be involved in” (Participant 2, Physiotherapist, USA) |
Multidisciplinary team approach to lymphoedema care | “… it is the physios' job, physio or occupational therapists, those who are trained in lymphoedema management. And we have very cordial relationship with onco-surgeons and the onco-nurses, as well as a physio and occupational therapists. So we work as a team and we have this Disease Management Group… So we do attend their regular meetings, so we are members of breast DMG. So we are having very cordial relationship. (Participant 10, Physiotherapist, India) | ||
“It's not rocket science. It's the basic. It depends where you go. Physiotherapists or OTs. I think if there's other musculoskeletal impairments, you need the physio because the OTs do not have that level of expertise. Nurses certainly don't have it. They're good at flagging, identifying these issues. …. I think we should just all work together” (Participant 9, Occupational Therapist, Australia) | |||
Increasing the healthcare teams’ lymphedema knowledge and capabilities | “Limited resources and limited professional skills. Definitely. But they are all keen to learn. So if you can get funding to get a program up and going they will be very attentive, but the most important thing is don't try to take their modern products over there. Use their products, learn how to use what they have there. That's a much better way to teach them” (Participant 17, Wound Nurse Consultant, Australia) | ||
Developing Lymphoedema guidelines applicable to LMIC | “I'm sure they're applicable. I think that may maybe for… I understand, well what we think the guidelines should be, should be evidence-based. And we can apply those ones, but we would be more comfortable if we are able to, let's say, test those ones and know that they actually work in our sets and then we can confidently say that these are our guidelines. But aside that, we are open to using resources from elsewhere” (Participant 1, Physiotherapist, Ghana) | ||
Promote continuity and coordination | Strengthening continuity and coordination for lymphoedema care | Too little sharing of clinical information to inform care | “The other health professionals involved are only on referral like nutritionist, psychologist, because there is no formal referral from the doctor, no access to make a history so we rely on what patient is open to disclose, and ask for the name of the doctors who are involved in the care, but it's up to the patients. Very late stage though” (Participant 3, Physiotherapist, Peru) |
Need for regular follow-up | “And, we usually ask them to come for check-up every three months just to check. Even if the patient is discharged, I ask her to come back just for a check-up for the measurement and the texture of the arm or the leg, every three months. We do a reminder” (Participant 11, Specialist Lymphoedema Therapist, Lebanon) | ||
Support self-management and prevention | Effective patients’ self-management and treatment adherence | Encouraging health seeking behaviours | “Yeah. So we try to shadow the appointments such that, first and foremost, they're not too tired and it's not too much of a burden. And sometimes when they come, they are probably unable to do two treatments and come to physio and then go to another department or other reviews at the same time. So we try to make the appointments as flexible as possible for them. So this will encourage to come regularly” (Participant 1, Physiotherapist, Ghana) |
“Let's say, the patient, she doesn't want to bandage on daily basis and I know that she's in the maintenance phase, if she is in the intensive phase, no, there is no negotiation” (Participant 11, Lymphoedema Specialist, Lebanon) | |||
Shared decision-making and understanding patient’s preference | “the patient, they know nothing about the lymphatic system and the lymphedema. So I start from the scratch. I have simple diagrams, sometimes I draw for the patient to explain what is the lymphatic system, its relation to the cardiac circulation and all this stuff. Then I start to explain to him what the injury caused to his lymphatic system. And I start to explain how he can make it worse and how he can make it better. Then we start the dialogue about this is a chronic condition and most of the patients are expecting that you give them a pill or you just put a machine on the leg and the problem is solved. And this really takes me a very long time” (Participant 6, Physiotherapist, Egypt) | ||
Involving patient family and friends in lymphoedema care | “And the models that I've seen that are so powerful are about community engagement, community participation, family participation. It's what I believe in so much”. “But, of course, not everybody has family. It's easy to assume that, but of course, a lot of people don't” | ||
“The model in India, for instance, is about you don't just take the patient, you take them and their family. So they come, and their family are taught how to help the patient. It's a whole family. I wish we could have some of the things that they have in our country, because we are very much about the nuclear family, and families don't … I mean, some families do, but the idea of the culture of the families, and very, very powerful one are absolutely, that's what's transformational for people (Participant 15, Nurse Consultant, UK) | |||
Implementing person-centred lymphoedema care | “…if I have a primary lymphedema patient, I have to follow the same rules. Now, depending on every patient, I might have to adjust each component of the whole CDT. A patient might be needing more compression, another patient might be needing…, but all in all, the main components are present, whether the patient is coming for secondary lymphedema or whether the patient is coming for primary lymphedema” (Participant 11, Lymphoedema Specialist, Lebanon) | ||
Modifying and improvising lymphoedema care | “But because of the materials are very costly, we use alternative options like cotton fabric and different sort of materials of similar to the proper bandages for patients to use” (Participant 3, Physiotherapist, Peru) | ||
“Very good. Most families really want to get involved and want to do as much as they can. And they actually enjoy learning how to do it. It's just getting them the resources. So for example, you can use cotton sheets, you can cut strips of a cotton sheet up and teach them how to wrap. So there are ways, they do have things, and we can just teach them how to use what they have” (Participant 17, Wound Nurse Consultant, Australia) | |||
Supporting and promoting lymphoedema self-management | “Where he has to take care of himself like skincare, like self MLD and he has to put on his stocking on a regular basis. He does this for a lifetime, it's a chronic problem. I usually see him once per month, three or four times per year” (Participant 6, Physiotherapist, Egypt) | ||
“Whether it was skin care or wound care, providing compression, modified compression … And the key, too, was not just the hygiene but the manual lymph drainage. We were able to train everybody, basically, on the essential skills to be able to manage this. And ultimately, train the patients for life, as this is something they had to manage for life” (Participant 2, Physiotherapist, USA) | |||
Encourage quality care through leadership and incentives | Investing in lymphoedema care | Creating an environment for patients to receive quality lymphoedema care | So then it's about looking at what is a system of care which is really realistic and usable? Then it's looking at advocacy, empowering patients in organizations, and all … There's so many levels that we need to look at to try and make a difference” (Participant 15, Nurse Consultant, UK) |
Need for universal health care to cover the costs of lymphoedema care, inclusive of materials | “With the public sector, with the insurance that is fully covered by the hospital the government, it only is a service but not the materials. So the patient still needs to buy all the materials and the garments. So it's basically just paid for the service given by the physiotherapist” (Participant 4, Physiotherapist, Peru) | ||
3. Community level | |||
Raise awareness and reduce stigma | The burden of stigma impacts adversely on every aspect of the persons’ life | Reducing feelings of shame and embarrassment | “…but we do experience that patients feel very much ashamed when there is something like lymphedema and due to that they are embarrassed by their body, there is a decrease in social interaction” (Participant 7, Physiotherapist, India) |
Reducing nihilism | The reality is, this is a condition that takes an awful lot of effort to get a change. It's of very little interest to most people, and there is a belief in the professions where you can't do anything. So then there's this apathy around it” (Participant 15, Nurse Consultant, UK) | ||
The power behind a condition is related to how the medical profession view it. Lymphedema is not the sexy, or you know? Nobody wants to work in lymphedema, it's not neuroscience or something (Participant 6, Physiotherapist, Egypt) | |||
Fear and stigma | So this huge limb which is what everybody recognizes as elephantiasis… There's a huge fear around that, there's lots of taboos around it, there's lots of beliefs. so they wait, and the patient might know early on they're getting changes, but they very often then end up with people like Doctor [XXX] out of complete desperation. (Participant 15, Nurse Consultant, UK) | ||
Raising awareness of lymphoedema | Promoting understanding of lymphoedema through information | “We have a major problem, not only in lymphedema, but in lymphedema it's much more showing, when it comes to patient education and patients having access to information. But, to have access to information on lymphoedema, it is very difficult. There is no direct, official, one resource of information for the patients” (Participant 11, Lymphoedema Specialist, Lebanon). | |
Encouraging and supporting health seeking behaviours | “And we also insist one of the relatives to attend this program. So they know basically what is the signs and symptoms of lymphedema. So the moment they get any of their signs and symptoms, they don't need to go to the surgeon or oncologist first, they can directly come over to us so that we can treat them in that hospital itself” (Participant 10, Physiotherapist, India) | ||
“And then I've done other work in lymphedema, centering around and publishing … talking about the understanding of the lymphedema continuum, as we're starting to recognize that all oedema essentially is lymphedema, and what that means. So, we're trying to raise awareness about that through the work of Dr. Stanley Rockson out of Stanford University” (Participant 2, Physiotherapist, USA) | |||
Mobilise and coordinate resources | Promoting Peer support | Practical peer support groups | “They have a really neat group down there. It's a women's group and they do a lot of sewing. And really, for whatever the needs are. And the idea was to see if they could come up with a way to make custom … like, sew garments for people that needed them” (Participant 2, Physiotherapist, USA) |
“There are various forums where the patients are connected to each other. So there is something like patient support groups of cancer support groups, from which the referrals flowing. And of course through word of mouth from patient to patient” (Participant 18, Physiotherapist, India) | |||
Accessing traditional healing | “The traditional route in many of these countries is to go to the traditional healers first” (Participant 15, Nurse Consultant, UK) | ||
“So in meeting with a doctor, they're already late in reporting, and they may have tried all forms of herbal or traditional medicine to help, and so most of the time they come in late” (Participant 1, Physiotherapist, Ghana) | |||
Promote consistent financing | Lymphoedema care is costly | Lymphoedema impacts on employability | “And I also find that most of our lymphedema cases, by the time they come to us, they may have resigned, and then also many of them are people who are self-employed. So they really do not get the support of their employers. And they don't really have a company or they don't have employers taking care of them. And so they need to bear the cost themselves, many of them” (Participant 1, Physiotherapist, Ghana) |
Lymphoedema care not covered by Universal Health Care | “They don't actually pay anything. It's funny when the government introduced some insurance scheme, but that insurance scheme is only for public workers, people are working for the government. Essentially free of charge management, they don't even pay for it. It's free” (Participant 5, Oncology Nurse, Zambia) | ||