Themes and demonstrating quotes from the interviews and focus groups with stakeholders in burns care in India
| Theme | Quotes | Participant |
| 1. Shared tasks—care and rehabilitation | ‘They are very important. Patient’s family has to give good support to the patient. If they would not maintain proper hygiene of patient, would not feed him nutritious foods, then his condition will not improve. We will do whatever is included in our list of duties but after that, only family members have to be there for him for 24 hours. While the patient is here, we are by his side 24 hours. Afterwards, someone has to be there with him.’ | Participant 12, healthcare provider, nurse |
| ‘Because you know we are not there 24 hours. The family members, one of the family members is there, so we have to explain things to him or her that why it is important how you have to feed the patient. This is very important.’ | Participant 7, healthcare provider, dietitian | |
| ‘Mostly, the health education is given by our nurses and doctors. And when the patient arrives, we explain things to the family members that time only.’ | Participant 12, healthcare provider, nurse | |
| ‘If by chance, we give laundry in morning, if we cannot give it back in the evening. Earlier, we used to have only a single laundry system here. We ask them to use a clean sheet, iron it, and keep it with themselves. Give the patient a good diet. Never rush the patient. Do not ask him too many questions. For prevention of infection from mosquitoes and flies, use a mosquito net. Attend with clean hands. Sometimes, when we have too many patients, we give proper gloves to patients to apply ointment. They do it. It only happens when there is a huge number of patients and we tell our attendants to do the dressing of this patient and that patient too. We have to do it because there is a shortage of staff.’ | Participant 7, healthcare provider, dietitian | |
| ‘There should be one thing audio visual. Means audiovisual aids are the best and most need thing in our unit. We feel that in spite of telling them again and again they do not understand because they do not have that much education. We say “contractures” but they do not understand what that means. We use picture albums before discharge to reiterate the importance of rehabilitation.’ | Participant 2, healthcare provider, physiotherapist | |
| ‘We need to make tough decisions. We know which patients are salvageable, and who are not. Some are kept in general ward with just pain relief, some are sent back home. Burns unit has shortage of beds.’ | Participant 14, emergency medical officer | |
| ‘It is just that if they told us more then we could have made independent decisions.’ | Participant 25, patients and carers, male patient | |
| 2. Coordinated - multidisciplinary team | ‘We have not only read the importance of such a team in books.’ | Participant 5, healthcare provider, nutritionist |
| ‘So it’s a very nice multidisciplinary cohesive team where we all work together for improving the patient outcomes.’ | Participant 16, healthcare providers, general surgeon | |
| ‘For any severe case of burn injury, an integrated team effort is required. Single doctor or single staff nurse cannot give full care to that person. Team and workforce is required. In our profession we learn about mental health psychological impact by experience, very late in the career. You cannot treat the body without treating the mind.’ | Participant 15, healthcare providers, general surgeon | |
| ‘Burn cases are different. It is not like jaundice or pneumonia where the patient gets well fully and then, goes home. Like, I showed you pictures of burns cases. The patient could be experiencing (medical term), contractures, etc. So who will assess his mental status? For this, teamwork is required. And post-discharge, the patient requires physiotherapy. And occupational therapist will tell you about skills, etc. And, psychologists, counselors, and psychiatrists are very important. If these doctors are not on the team, and you send the patient home simply because his wounds have healed, then you will never know if the patient’s limbs are functioning well, if he has resumed his work, and if he is leading life as before. And, he will again try to commit suicide.’ | Participant 5, healthcare providers, nutritionist | |
| 3. Community, access and health delivery systems | ‘I screamed and they took me to a hospital at [redacted]. It was a government hospital and it took too much time there. They kept asking me for my photo and papers. So much time was wasted there.’ | Participant 23, patients and carers, male patient |
| ‘They would ask you to deposit money first and then, they would begin the treatment.’ | Participant 24, patients and carers, male patient | |
| ‘We had to move around 2–3 places, they kept saying take him there take him here.’ | Participant 28, patients and carers, female carer | |
| ‘First we took him to the emergency. They cannot admit patients there. Then, we were sent to new PD (patient department) and two weeks later he was admitted.’ | Participant 29, patients and carers, male carer | |
| ‘This can be done at the level of administrators in the hospital—my hospital and in hospitals, which are not related to this place like the various state governments, the people, who are sending patients to us. There, they could be doing a better triage, that send only those patients, who are really going to benefit. So, that is one. So the undue reference should not be there. Some patients could be managed only on advice, which can be done through tele-medicine, which we are now practicing. Like, many district hospitals in [redacted] will be sending pictures of their patients to us and then, we can discuss with them that don’t send them here, manage them there. So, that’s one way of utilizing your resources.’ | Participant 8, healthcare providers, plastic surgeon | |
| ‘Follow-up is the key issue because they don’t want to come back to the same situation, but I think their lack of education and their lack of understanding leads to that kind of thing.’ | Participant 6, healthcare providers, occupational | |
| ‘No, the [redacted] people had called me for a follow up but then, I did not have any money left. So I did not visit the hospital. Later on, in [redacted], I had to spend a huge amount. I talked to them about the expenses but they refused to do anything about it. Later, my father gave me money for my treatment. If I had money, I would have continued my treatment at the [redacted] hospital. They provided me with immediate care. But I had to arrange money.’ | Participant 23, patients and carers, male patient | |
| ‘I used to go to [redacted]. They used to call me and I visited them. If there were expenses involved then I used to take someone along with me. But I had to bear his expenses too. Like I had to provide him with breakfast, etc. If I promise to bear his expenses, only then he will come along with me. Moreover, I had to travel by special coach because with all this bulk, it was impossible to even think of travelling in general coach. People might push me or I might trip on something. So I used to travel by the special coach.’ | Participant 23, patients and carers, male patient | |
| ‘Yes, it would have been better, then there would be no need to travel always. They also asked me to visit on alternate days. But then, it would be too much for me. Travelling for 2 hours in heavy traffic would be so hectic. I don’t have a car. And, it wouldn’t be possible to travel by bus with all this.’ | Participant 24, patients and carers, male patient | |
| ‘Now the mobiles have come, we can do follow ups when there was no phones, there were no roads.’ | Participant 16, healthcare providers, general | |
| 4. Systems—social, legal and policy challenges | ‘How to handle the burns, what precautions should be taken when there is less burn, such awareness should be there. It is a developing country, in our industries, home, even in the hospitals there should be a separate department where patients should be told these precautions, how they should do the right things, and all this should be there … In my opinion, public awareness should be mandatory and the community should provide it in a timely manner.’ | Participant 12, healthcare providers, nurse |
| ‘There is a stigma around burns, They do not want to be seen. We try but as you can see burns patients usually come to physiotherapy after all other patients. Spinal, geriatric, OPD (out-patient department) patients do not want to see them. It is sad, we try to educate everyone here but if there is stigma in health facilities you can see how hard it is for them to integrate socially. My friends tell me to work in sports injuries.’ | Participant 2, healthcare providers, physiotherapist | |
| ‘Burn awareness for prevention and minimization, prevention is one thing and minimization is one thing, should go hand in hand with the treatment also. Like, if they are establishing the units and all that and we are not giving the community the proper education about minimization or proper education about the prevention or how … So all these things should be told to the community or should be given to the community that these are the things you can do for prevention of this type of burns.’ | Participant 18, key informants, nodal officer | |
| ‘People should take care of safety at any place whether they are working for a company or otherwise. Initially, it feels difficult but all should adopt safety measures. One should be careful and companies should also practice it strictly.’ | Participant 24, patients and carers, male patient | |
| ‘See, we need to put these issues in front of government.’ | Participant 6, healthcare providers, occupational | |
| ‘Recovery is different, best in children. They are very well looked after too. Good thing is there is a shift, we do see male patients. Not all women as two decades ago, all dowry deaths. Now we have women 20 weeks pregnant, 3–4 pregnancy and you know why. Look around you’ | Participant 13, healthcare providers, general surgeon | |
| ‘The biggest barrier is that people are not interested. The burn in India is still treated as untouchable within the (unclear). In the sense that, although it does not happen in my unit, the burn patients are generally relegated to one corner of the hospital. They are considered unsuitable. But that mindset is changing at all levels. It never was in our hospital. Once you go to our hospital ward, you will see that our burnt patients are as neatly kept as comfortably kept as other normal patients. I think that untouchability part we are taking care of. They should be treated equally. But the mindset of people that burnt patients need to be treated with lot of care and compassion is not (unclear). Somehow, in this Indian subcontinent, we are not very sympathetic to burn patients.’ | Participant 8, healthcare providers, plastic surgeon | |
| ‘This is my personal perception, if this is the case, that is why the burns program is in a very initial stage and other programs are already taken ahead. This is the reason mainly because we have not considered because we have lots of other mortality and morbidity in India.’ | Participant 18, key informants, nodal officer | |
| ‘First thing is that legal rehabilitation is required. It should be this way that their cases will be given priority. Then preferably, their cases should be contested before female judges. Female judges are more sympathetic. And, they should be run fast, like fast track courts. Their judgments should come as fast as possible.’ | Participant 17, key informants, paralegal |