Background
Methods
Study design
Setting
Sampling and recruitment
Participant characteristics | Nurses | Doctors | Volunteers | Patients | Care-givers |
---|---|---|---|---|---|
Total | 3 | 3 | 12 | 8 | 14 |
Gender | |||||
Male | 0 | 3 | 7 | 3 | 2 |
Female | 3 | 0 | 5 | 5 | 12 |
Age group (in years) | |||||
18–30 | 1 | 1 | 4 | 2 | 2 |
31–50 | 2 | 2 | 7 | 5 | 6 |
51–70 | 0 | 0 | 1 | 1 | 6 |
Number of years in the current role | |||||
0–1 | 0 | 0 | 0 | – | 6 |
2–5 | 1 | 1 | 7 | – | 3 |
6–10 | 2 | 0 | 2 | – | 2 |
11–21 | 0 | 2 | 3 | – | 3 |
Data collection and study procedures
Participants | FGD (n = 3) | IDIs (n = 20) |
---|---|---|
Patients | 8 (3 male, 5 female): 1 FGD | 0 |
Care-givers | 0 | 14 (2 male, 12 female) |
Doctors | 0 | 3 (3 male) |
Nurses | 0 | 3 (3 female) |
Volunteers | 12 (7 male, 5 female): 2 FGDs | 0 |
Data analysis
Results
Roles of volunteers, doctors and nurses in the palliative care programme
Our main role is that of a team leader. The most important task is to guide other members of the team [in patient care]. Our direct activities [in home care] are fewer, and our indirect activities are more.40 year old doctor with 14 years’ of experience in palliative care.
Doctors had a role in the programme from the beginning. Their vision helped in the development of the programme.41 year old doctor with 15 years’ of experience.
The main role of the volunteer who is working as a mediator is to link the isolated patient to the community and provide [them with] more social support. That is, presenting the problems of the isolated patients before the community and informing the related agencies. This is the basic responsibility [of the volunteer].18 year old male volunteer with 2 years’ experience.
The volunteer is a strong support to the care-giver. Sometimes it is the care-giver who has more psychological issues than the patient!34 year old male volunteer with 3 years’ experience.
Experiences of care-givers
I have to do everything for my mother. Feed her, wash her after she goes to toilet, bathe her, brush her teeth, comb her hair.
My heart aches for my son when I see other children of his age [in the neighbourhood] going to school or when his sibling goes out to play football. This is my greatest agony. It will be there all my life.
I am all alone here during the day. I have lost touch with many of my friends because I cannot go out leaving her alone.
[They would say] ‘earlier my wife responded whenever I called. Now even if I call five or ten times she doesn’t come.’ They call regularly for necessary and unnecessary things, so naturally the wife may not see it as an urgent need and may not respond. But this will create psychological issues for the patient: earlier it was like this, now nobody is listening.48 year old volunteer with 14 years of experience
[I]f someone is caring for a sick person they will [be treated with some respect], but for this category [dementia patients] it is the opposite. When they help the patient take a bath, the patient will verbally abuse them. However much they do, they get a directly opposite reaction. Because of this there will be tension between patient and care-giver.30 year old doctor with 3 years of experience
Role of the community
This [the activities of the clinic] is run by the community, not us as volunteers. If the community does not give money for the activities of the clinic, we will cut activities one by one. This is the responsibility of the community.46 year old male volunteer with 15 years’ experience.
Nurses, doctors and volunteers also believed that the patient’s neighbouring communities had a critical role in supporting patients and families with palliative care needs.There are neighbours who take care of patients living alone. They cook food and do wound dressings [for the patients].Palliative care nurse with 3 years’ experience.
Memo written after interviewing the care-giver of an elderly male with dementia | |
---|---|
This was quite an eye-opening interview in the sense that I learnt the importance of neighbourhood networks. The caregiver, the wife of a 79 year old man, was very welcoming. The poor condition of the house struck me as I sat down in their one room mud house with unplastered walls. They were very poor with no source of income and they have no children. I learnt the difficulties of being the lone caregiver of a demented patient. Her words “he is just like a child” summarise the amount of patience required to care for him. My question is how does she, an old woman in her early 60s manage it all alone? From her accounts, they receive a complete package of care from the palliative care clinic. But I also learnt about the presence of a very supportive neighbour. I saw the neighbourhood network at play when she recounted how her neighbour helped her to locate her husband when he wandered away from home one morning. She said this neighbor offered his help for any emergency situation she may have. I also got a glimpse of the spectrum of services offered by the palliative care clinic when she told me that volunteers fixed their leaking roof and that one of them sponsors their grocery shopping. The palliative care nurse cuts the patient’s nails, shaves him and cuts his hair. I also learnt that volunteers helped her to take care of her husband when he was hospitalized. I was amazed at her calm and composed attitude; and how she did not appear to be worried or anxious about being alone. Is this because of the security she gets from her neighbourhood and the palliative care support she receives? I definitely learnt that neighbourhood support systems are vital for families like this, so I guess this is the informal neighbourhood network that people talk about. I sense that neighbourhoods are very important in supporting palliative care. |
We create a neighbourhood network in their [patients’] own neighbourhood to offer support, and create a volunteer team which can understand their needs and act accordingly.
The patient is not only the responsibility of their houses. He is the responsibility of that community. The community has to intervene for the patient. This duty is done by the palliative care volunteers.43 year old male volunteer with 3 years’ experience.
[The palliative care programme] is getting good support from the community. That is why the programme is still running. [Without it] it won’t function so well.40 year old doctor with 14 years’ experience
Benefits of the palliative care programme
Patients will have lot of issues. They will have financial difficulties or transportation issues to see a doctor. It has been possible [for the palliative care clinic] to give prompt follow up for a good number of patients with chronic illness… it’s not just a medical approach, we provide financial help, social and spiritual support.
We [the home care team] are able to give regular care. [The patients] get the feeling that whatever is humanly possible is being done for them. Care-givers are well supported and they know they have someone to call when there is a difficulty, someone who can understand their problems. They are getting reassurance.40 year old doctor with 15 years’ of experience.
Whenever they [the home care team] come, they check the blood pressure and blood sugar. So, we get these things done without going to hospital. That is a great convenience for us. We can care for him at home.38 year old female caring for her father-in-law.
His [father’s] thought was that if the disease subsides after taking medicine then he wouldn’t have to take drugs daily. We had that kind of information. We wouldn’t have done it [stopped taking medication] otherwise. We started taking medicines regularly after coming into the palliative care programme…it’s so much better.60 year old female care-giver for a male with psychiatric illness.
They taught us how to do dressings. How to make the water hot for the dressing, to put salt in it, to steam it. We didn’t know any of these things. We don’t see this in hospital [because] they do the dressing for us and we don’t know how it is done.
I felt that I could do more after [receiving] palliative care. Now I am mentally and physically strong. I got financial support also. I started earning after learning soap and umbrella making. I am self-reliant now. It was possible because of the strong commitment and support of each and every volunteer.36 year old male patient with Muscular dystrophy.
I became brave after attending the support group. [I can] go everywhere. Earlier if I was asked to go somewhere I would not go. I needed someone to go with me. Now I don’t need anyone. I am ready to go anywhere [in my wheelchair].29 year old female patient with Muscular dystrophy.
In the earlier days wherever there were wounds, there were maggots. Today we still see wounds but there are no maggots. That is because of palliative care. We [volunteers] have crossed streams and rivers to ferry paraplegia patients; often three or more [volunteers] lifting one patient. When we held their hands, the world saw them. They [paraplegia patients] saw the world outside. That’s the change in their lives. It’s just because of palliative care. Otherwise they would still be living like cavemen…
Challenges of the programme
The number of patients is rapidly increasing. We are finding it difficult to find and reach all patients [in the county]. Despite seven days of home care visits we are unable to reach everywhere.
We have a shortage of trained nurses and a high shortage of trained volunteers. Similarly, doctors. Even today’s newspaper has an advertisement seeking doctors for palliative care!46 year old male volunteer with 15 years’ experience.
Some people think that palliative care is a service only for the poor. Actually, palliative care is for all patients. The effect [of disease] is the same for rich and poor.
Discussion
Provision of holistic care
-
The current programme has been beneficial in making medical care regularly available to patients who are marginalized from regular health care. In resource poor settings, health care is costly due to both direct and indirect costs. The cost-effectiveness and convenience of home-based care programmes are well documented elsewhere [28‐30]. Care-givers reported that the home care visits of professionals reduced hospital visits and admissions. Home visits in other contexts have also been reported to reduce admissions to emergency departments, which are often stressful and exhaustive for patients and their families [31]. A meta-ethnographic study has shown that the availability and skill of home care teams can also enhance the patient’s feelings of security at home [9].
-
There is often a preconceived idea that palliative care is directly linked to active dying, and that supposed link can generate fear in some patients and their families [8]. This was reported as a barrier in accessing palliative care in our study, thus the importance of educating patients about the benefits of palliative care may alleviate fears and encourage them to access services in this context as well as elsewhere [8].