Participant characteristics
Of the 38 people approached directly, 19 (50% response rate) participated in the study. Reasons for non-participation included a ‘bounce’ or non-response to emails or lack of time due to workload (heightened during the pandemic). Most participants were female (n=14) and worked as physiotherapists (n = 11). Other participants included physicians (n = 2), an occupational therapist, a dermatologist, an epidemiologist, an oncology nurse, a nurse consultant, and a wound nurse consultant. Ten participants were working permanently in a LMIC while the remainder were based in a HIC but had been involved in initiatives to improve lymphoedema care across multiple LMIC.
Participants’ experience of lymphoedema from various causes differed according to the country they worked in and their role. Participants (n = 6) working in community health centres in Haiti, Fiji, Cook Islands, Bangladesh, and China were more familiar with non-cancer related lymphoedema caused by filariasis, podoconiosis, idiopathy or trauma, whereas participants (n = 8) with experience in Egypt, Zambia, Ghana, Lebanon, India, and Peru worked in the cancer setting and mostly dealt with breast-cancer related lymphoedema secondary to treatment. The remainder (n = 5) had a mixed experience of cancer-related lymphoedema and other causes.
The median length of interviews was 42 minutes (range 27 to 66 minutes).
Themes
Emerging from the data were three themes, as described below.
Cancer versus non-cancer related lymphoedema: different pathways, same care
Participants with experience across causes of lymphoedema indicated that people with cancer-related lymphoedema tended to be identified earlier because of regular check-ups when accessing radiotherapy and chemotherapy. Unfortunately, people with lymphoedema due to other causes tended to present later, reducing the effectiveness of management.
“A lot of these patients [with non-cancer related lymphoedema], when they do present, it's a lot of times in a very late-stage, very emergent situation. And it's really difficult to treat at that time, and resource-intensive, as you're aware” (Participant 2, Physiotherapist, USA, reporting on lymphoedema in Haiti and India).
Participants suggested that people with cancer-related lymphoedema were more likely to recognize signs and symptoms, including swelling and heaviness, and sought medical advice that facilitated lymphoedema care.
“I've spoken with patients who realized the swelling, contact their doctors and ask them for solutions. And some of them were able to refer lymphoedema services” (Participant 1, Physiotherapy, Ghana).
By comparison, people with lymphoedema from non-cancer causes were said to have minimal knowledge regarding their condition. This was especially true of filarial lymphoedema, which showed no symptoms at early stages.
“When you work in lymphatic filariasis is very challenging because the people who are infected have no idea, there's really very little symptom to actually being infected with the parasites. But what they do see is people who come to their office with lymphoedema and hydrocele seeking care” ”(Participant 13, Epidemiologist, USA, reporting on lymphoedema in sub-Saharan African, Pacific Islands, Brazil, Dominican Republic, Guyana and Haiti and South-East Asia).
Unlike lymphoedema from other causes, filarial lymphoedema was said to require a laboratory test to confirm and treatment with medication.
“…but 90% of the patients are diagnosed with filariasis and they are taking regular pills for filariasis. Not even of course the test is negative. So patients do these tests and I have patients telling me that they have this medication prescribed by their doctors” (Participant 6, Physiotherapist, Egypt).
However, once the infection was treated, participants indicated that patients with filarial lymphoedema were referred for ongoing assessment and management similar to lymphoedema from other causes. Regardless of the underlying cause, participants indicated that similar barriers and facilitators impacted on the lymphoedema care.
Barriers and facilitators to lymphoedema care
Barriers and facilitators were identified in relation to most ICCC Framework components (Refer Table 2). Participants especially emphasised three key facilitators, namely: 1) joining forces to overcome lymphoedema related stigma; 2) building workforce lymphoedema capabilities; and 3) partnering with patients and families to support self-management.
[Insert Table 2]
1.0 Joining forces to overcome lymphoedema related stigma
Stigma was seen as a key factor influencing the experiences of people living with lymphoedema. Participants reported their patients felt shame and embarrassment because of their condition and decreased social interactions due to stigmatizing from community members.
“...patients feel very much ashamed when there is something like lymphoedema and due to that they are embarrassed by their body, there is a decrease in social interaction” (Participant 7, Physiotherapist, India).
Participants perceived that a lack of community awareness about lymphoedema led to their patients becoming a subject of curiosity which, in turn, contributed to social avoidance.
“… it's a big issue, in India if they (community members) see someone with a huge limb or in fact, a little bit extra swelling or with compression sleeve on…. They would come and ask them what happened to you? And then they will give their self-advice, what to do next. And this puts the patients, those who are suffering with lymphoedema into a lot of discomfort and stigma. So usually that's a big issue because always they try to hide their swelling and they don't wear a compression sleeve often if they go out, just to avoid these frequent questioning by the general public.” (Participant 10, Physiotherapist, India).
Participants also reported encountering cultural beliefs that the condition was caused by sorcery or repayment of a past sin, or that lymphoedema was contagious, further adding to stigma.
“I think that's probably a lot of things. Some of it could be knowledge, in some locations there is a concern that lymphoedema is caused by sorcery” (Participant 13, Epidemiologist, USA, reporting on lymphoedema care in Benin, Mali, Tanzania and India).
“Their culture… there is a lot of voodoo and different beliefs there that maybe they were possessed, or that they had done something wrong. People didn't understand that it wasn't contagious ... all these different things. So we had to demystify it a little bit. (Participant 2, physiotherapist, USA, reporting on lymphoedema care in Haiti and India).
In some countries, gender roles were said to be important in determining who sought and received lymphoedema care. Men were generally considered more likely to go for treatment than women because their partners tended to be more supportive.
“… treatment seeking based on gender bias. Because if a male having a lymphoedema, then the family would aggressively come forward and seek for treatment. And the wife would be always there for helping them, but not the same for a female suffering from lymphoedema. It's the case, three voice, they come forward for treatment late and families may not be willing to spend much money on them. And yeah, that's a big issue” (Participant 10, Physiotherapist, India).
2.0 Building workforce lymphoedema capabilities
2.1 Develop health professional knowledge: The lack of community awareness and support for lymphoedema was reported to be compounded by a belief prevalent among health professionals that the condition could not be successfully managed.
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, reporting on lymphoedema care in South Africa, India, Uganda, Tanzania, and Sierra Leone).
Participants emphasised that a lack of skilled health care professionals was a key barrier to delivering optimal care in LMIC and indicated the need to build capacity by means of a train-the-trainer model to reduce reliance on international expertise.
“…training more [local] people and they can go out and create master trainers who then will train health care providers who will then train people who are the clients, the recipient” (Participant 13, Epidemiologist, USA, reporting on lymphoedema care in Benin, Mali, Tanzania, and India).
“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, reporting on lymphoedema care in Haiti and India).
Where expertise was not available within the country to provide training, participants emphasized that expert teams from HIC should aim to build a sustainable workforce after their time-limited involvement was over, as well as one that was sensitive to local contexts, including culture.
“[We need to be saying] ‘we’re not here to give you a fish, we're here to teach you how to fish’. And that's the key thing. But the point that I also want to make is that it's an ongoing process. And you really have to work so hard on developing those local champions. And the problem is you develop these, and they're really very good and they move things along. But when they're competent, they do well, they tend to move on to other things” (Participant 19, Medical Physician, Canada, reporting on lymphoedema care in Haiti, Uganda, and Brazil).
Participants stressed the need for health care professionals in LMIC to become acquainted with available resources and tools in handling the condition.
“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, reporting on lymphoedema in Fiji, Cook Island, Solomon Island, Papua New Guinea, Bangladesh, and Indonesia).
Participants confirmed that health professionals required continuing education and support. Participants indicated that treatment was not possible under rural conditions due to limited resources in Pacific and Africa Regions, requiring capacity building.
“So it's, so the gap is: one, is the knowledge of the health care practitioners; two, is the availability of the materials to treat and manage these conditions; and three, the treatment management itself is not very friendly in a very rural conditions of these countries” (Participant 14, Dermatologist, Japan, reporting on lymphoedema care in West Africa).
2.2 A commitment to multidisciplinary team care: The importance of a coordinated multidisciplinary team approach to lymphoedema care was emphasized in order to address the condition’s multidimensional impacts.
“…sometimes depending on the condition, we let the dietician come in to help with some diet modification. And sometimes we have to bring in the psychologist to help them accept all that they have to do deal and then make our treatment also more friendly and more meaningful for them (Participant 1, Physiotherapist, Ghana).
Unfortunately, however, differing professional perspectives and a lack of team mentality were said to create challenges to a multidisciplinary approach:
“So what happened in the real life is that the surgeon finished his surgery and the oncologist finished with the radiotherapy and his chemotherapy [for people with cancer-related lymphoedema]. It's like I don't want to see the patient again. I have nothing to do with the lymphoedema. Nobody [health worker] has to ask me about the lymphoedema. Nobody talks about the scar or the lymphoedema. This is not my concern, this is not my part and I'm not interested to help the patient” (Participant 6, Physiotherapist, Egypt).
Participants also identified important roles for other support services, including hospital navigating services, community health workers, and voluntary organizations who helped in lymphoedema management in Africa, and South America.
“And actually, and of course, the traditional, I mean the community health workers, volunteers, support workers, they also sometimes are involved, but really actually they are very good. Sometimes very good in dressing change and then managing these patients” (Participant 14, Dermatologist, Japan, reporting on lymphoedema care in Ivory Coast, and Ghana).
2.3 The need for lymphoedema guidelines applicable to LMIC: Participants perceived there to be a total absence of guidelines for lymphoedema care in LMIC.
“So, for the guidelines, there are no (LMIC) guidelines” (Participant 11, Specialist Lymphoedema Therapist, Lebanon).
While some participants reported not using any guidelines at all, several indicated that they used guidelines developed for HIC but expressed a need for these to be adapted to low resource settings.
“… we can apply those ones (HIC guidelines), 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 setting, 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).
Most participants seemed unaware of the WHO guideline on wound and lymphoedema management, and others indicated was narrow in content.
“We haven't seen any guidelines (WHO). We only apply knowledge from the school. But there are no guidelines per se, no some extra piece that someone can follow. No, we don't have that (WHO guideline), but we just use the knowledge that we've acquired from our schools” (Participant 5, Oncology Nurse, Zambia).
3.0 Partnering with patients and families to support self-management
Participants reported that effective lymphoedema care was dependent on patients having positive and established relationships with health professionals to set shared goals and enable access to resources to enable self-management. Appropriate treatment planning that included setting clear goals and ensuring follow ups were suggested as being critical to improving care and outcomes in LMIC.
“And patients, they can be taught a lot of ways to manage this themselves. And that's ultimately the goal. We help reduce it, and then they maintain it. That's really the position we took when we tried to manage it.” (Participant 2, Physiotherapist, USA, reporting on lymphoedema care in Haiti, and India).
Participants reported that they sometimes even gave free consultations to enhance self-management.
“We used to do a lot of free consultations for them. And that was our prerogative. It was not exactly allowed. So sometimes we do, when we do the education, we usually not let them pay for it” (Participant 1, Physiotherapist, Ghana).
3.1 The need for a person-centred approach:
Participants stressed the need for person-centred care that focussed on each individual’s care needs. While participants felt there were standard steps to follow in lymphoedema care, they tailored treatment for each individual and prescribed regimen based on the patient’s condition and presentation stage.
“…if I have a primary lymphoedema 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 lymphoedema or whether the patient is coming for primary lymphoedema” (Participant 11, Specialist Lymphoedema Therapist, Lebanon).
Participants indicated that they had to work closely with patients in planning and modifying their management to maximize individual outcomes.
“…Let's see what treatment is best suited to your needs." So, I know what is a gold standard treatment, but does that match with your life, and your expectations, and your reality? Then I would plan, I would say, "If we can work together, we can make differences in your life" (Participant 15, Nurse Consultant, UK, reporting on lymphoedema care in South Africa, India, Uganda, Tanzania, and Sierra Leone).
3.2 The importance of clear communication to help patients understand their condition and self-management:
Participants indicated the need to engage patients in clear communication about their condition to help them understand the management approach. Participants indicated that discussing patients’ conditions with them help to debunk any misunderstandings they might have.
“The patient, they know nothing about the lymphatic system and the lymphoedema. 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 how he can make it worse or better. Then we start the dialogue about this chronic condition, which takes a lot of time. Most of the patients are expecting a pill or you just put a machine on the leg and the problem is solved” (Participant 6, Physiotherapist, Egypt).
Participants sometimes provided information leaflets to help patients understand their condition better.
“…we have a patient information leaflet that we give to them to take along and also we actually, before we start their managed treatment” (Participant 1, Physiotherapist, Ghana).
Participants also used social media to educate patients on lymphoedema.
“…Through doctors and me, and I have some brochures, I have my Instagram account, I have my social media things that I can give all the information for my patients” (Participant 8, Physiotherapist, Bahrain).
3.3 Promoting adherence to management:
To encourage patients’ attendance to treatment, participants mentioned several strategies including planning schedules with patients, making flexible appointments and making it easy for patients to come for treatment and to allow some adjustments to promote better adherence to an agreed management plan.
“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, 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).
If patients’ needs were sufficiently met, they were more likely to be motivated to self-manage their condition.
“The last thing patients want to do is to put on bandages. And that was probably a logistical challenge, as well. But when they [health workers] explained to them, the patients saw finally, that they could get a reduction in their lymphoedema, and it could be maintained better by wearing compression, they typically opted to wear the compression. That was a reward in and of itself” (Participant 2, Physiotherapist, USA, reporting on lymphoedema care in Haiti, and India).
However, poor support systems and limited time for consultations and follow-ups was said to contribute to many LMIC patients having to cease their lymphoedema care or resort to alternative, less effective ways of managing their condition.
“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. So ‘if you don't get your treatment by three o'clock, well, you're not getting treated today cause I'm finished’ - that sort of attitude” (Participant 17, Wound Nurse Consultant, Australia, reporting on lymphoedema care in Fiji, Cook Island, Solomon Island, Papua New Guinea, Bangladesh, Indonesia).
Participants suggested that patients became especially motivated by seeing improvements in their condition.
“But when the patients saw finally, that they could get a reduction in their lymphoedema, and it could be maintained better by wearing compression, they typically opted to wear the compression. That was a reward in and of itself” (Participant 2, Physiotherapist, USA, reporting on lymphoedema care in Haiti, and India).
Participants highlighted that multiple competing interests for patients could distract from their self-management, and put in place various strategies to overcome this barrier, such as sending reminder messages as well as having regular consults planned for patients.
“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).
3.4 Adapting management to the resources available to patients:
Participants unanimously agreed that the standard model of lymphoedema care should include available resources for lymphoedema management. However, due to limited resources, they had to modify the management for patients who could not afford the necessary materials.
“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, reporting on lymphoedema care in Fiji, Cook Island, Solomon Island, Papua New Guinea, Bangladesh, Indonesia).
Participants indicated shortage in supply in most materials. Participants had to improvise and, in some cases, resorted to repurposing materials.
“We either had to find local resources that were sustainable and reliable ... or what we did is, a lot of times, we would just ... And we would repurpose compression, that we would teach them how to wash and take care of the bandages so that they could be reused” (Participant 2, Physiotherapist, USA, reporting on lymphoedema care in Haiti, and India).
3.5 Involving patient family and friends in lymphoedema care:
Participants indicated that support from families and friends was especially important to the care of their person with lymphoedema.
“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” (Participant 15, Nurse Consultant, UK, South Africa, India, Uganda, Tanzania, Sierra Leone).
Participants indicated that the friends and families not only provided emotional support and served as motivation for patients to attend appointments but could also provide financial support and could be involved in hands-on care if trained.
“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” (Participant 17, Wound Nurse Consultant, Australia, reporting on lymphoedema care in Fiji, Cook Island, Solomon Island, Papua New Guinea, Bangladesh, Indonesia).