Introduction
Methods
Study design
Study setting and historical context of care provision
Data collection
Pathway mapping
Focus group discussions
Data analysis
Pathway mapping
Focus group discussions
Patient and public involvement
Results
Pathway mapping
Focus group discussions
Participant number | FGD number | Age group | Sex | Marital status | Employment | Comorbidities | Socio-economic status |
---|---|---|---|---|---|---|---|
1 | 1 | 65 + | Male | Married | Employed | COPD | Urban |
2 | 1 | 55–64 | Female | Widowed | Housewife | DM | Urban |
3 | 1 | 65 + | Female | Single | Unemployed | IHD, VHD | Rural |
4 | 1 | 45–54 | Female | Married | Housewife | RHD | Urban |
5 | 1 | < 45 | Female | Single | Unemployed | – | Rural |
6 | 1 | 55–64 | Male | Married | Retired | IHD, RHD | Rural |
7 | 1 | 55–64 | Female | Married | Housewife | VHD | Rural |
8 | 1 | < 45 | Female | Married | Employed | VHD, COPD | Rural |
9 | 1 | 55–64 | Female | Widowed | Housewife | VHD, HT | Urban |
10 | 1 | 65 + | Male | Widowed | Retired | COPD | Rural |
11 | 2 | 65 + | Male | Married | Retired | VHD, CHF | Rural |
12 | 2 | 65 + | Male | Widowed | Employed | – | Urban |
13 | 2 | 65 + | Female | Widowed | Housewife | DM | Urban |
14 | 2 | 55–64 | Female | Married | Housewife | VHD | Rural |
15 | 2 | 45–54 | Female | Married | Employed | VHD, DM | Urban |
16 | 2 | 65 + | Female | Widowed | Housewife | HT, DM | Urban |
17 | 2 | < 45 | Female | Married | Housewife | VHD | Rural |
18 | 3 | 65 + | Female | Married | Housewife | IHD, RHD | Rural |
19 | 3 | 65 + | Female | Married | Housewife | VHD, HT, BA | Urban |
20 | 3 | < 45 | Male | Widowed | Employed | RHD, DM | Urban |
21 | 3 | 65 + | Male | Married | Retired | VHD, HT, BA | Rural |
22 | 3 | 55–64 | Female | Married | Housewife | HT, COPD | Urban |
23 | 3 | 45–54 | Female | Widowed | Housewife | IHD, RHD | Rural |
24 | 3 | < 45 | Female | Married | Employed | DM | Rural |
25 | 3 | 65 + | Female | Widowed | Housewife | IHD, RHD, HT | Urban |
Decision making sub-theme
“I did not feel good during the night … it happened between four to five days, however, I consulted with the doctor on the 4.th-time attack.” (FGD 1, P2)
“I had a fever… at hospital they gave Panadol only, they thought it was dengue, but the result was negative after test…” (FGD 1, P3)
“Had fainting attacks, 2002 when took to [district hospital], transferred to [JTH] because of hole in the heart and [consultant cardiologist] did [surgery].” (FGD 2, P4)
“I used to carry water pot, one day while I was carrying water pot I felt too ill and shortness of breath, after [death of husband] I became like this due to the worries, then this leg had small swelling, in that time only I came to [hospital] with shortness of breath.” (FGD 3, P1).
“I felt difficulties in respiration for some days. My younger brother’s wife who was a doctor told me to consult the consultant, She used to say this for long.” (FGD 1, P3)
“I felt tired after sweating, I sat in a place where I felt invisible, I didn't have any disease, I told my younger sister. She asked me “why are you having this much of sweat and I am not having” and asked me to go to the hospital.” (FGD 1, P9).
“I told my daughter after the disease came, she worked here at hospital as a midwife, I told her “I can’t do anything”. She told “pay the money in [hospital], the doctor will come on Saturday, he will take you to the ward.” As I did what she told me, I am alive.” (FGD 2, P2).
“I asked, “Are there any problems due to the operation?” And I told them after discussing with family members only I can tell.” (FGD 1, P9)
“He told to come to ward on tomorrow, I said my cousin passed away, I will finish the rituals and come back on Monday, but he said strictly you have to come, that’s why I have been alive for eight years … it was good as I didn’t attend the funeral … I accepted his words and went to the ward … If I disagreed his word my condition might be worsened.” (FGD 2, P2).
Paternalistic approach to care sub-theme
“I don’t eat anything suggested to avoid by the doctors, otherwise no food restriction, they asked me to walk, I used to walk for two years following the operation…” (FG1 P7)
“I don’t use [warfarin], I have to inform the doctors, after informing [the doctor] only we can do anything…” (FG1 P6)
“If I have any problem I see [consultant], he tells the needed, we adopt as he tells.” (FGD 2, P8)
Cost impacts sub-theme
“Madam [doctor] told “… there are no facilities for the surgery, thus you have to go to Colombo” needed money for that and transport limitation also there. Furthermore, that was wartime, in that situation I didn’t consider this as serious.” (FGD 1, P8).
“They gave warfarin for two to three years, then they asked, “Do you like to do operation, if you do operation only you can live longer with your children.” I replied I don’t have much money.” (FGD 2, P7).
“I had fever, visited at [divisional hospital] … they thought it was dengue, but the result was negative … Prior to the Fever I had tiredness, if I work, I feel tired, difficult in respiration … [divisional hospital] thought this was wheezing and send to [JTH], after testing they said “there is a 40% block”.” (FGD 1, P3).
“Went to a private hospital they told, “you have problem in heartbeat. I will give a letter, consult at Jaffna Teaching Hospital.” They transferred me to [JTH] and diagnosed a valvular problem. For the valvular problem they asked to do the operation at Colombo.” (FGD 2, P5).
“3 to 6 times went to Colombo, they neglected to do, then we informed our children to get money. [the children] got money and did it privately.” (FGD 2, P1)
“Here the waiting time is high … we have to wait until 1 pm and then only we can go home.” (FGD 1, P8)
“We are coming [to JTH] because INR [international normalised ratio] can’t be checked in other places… If INR facilities is [at divisional hospital] and if a doctor will see us and we are able to visit there we can save the expenditure for the transport and time too.” (FGD 3, P3).
Lifestyle impacts sub-theme
“Should not carry small child even baby also … Should not cut by knife, should not cut vegetables.” (FGD 2, P1)
“They asked to stop riding motorbikes, because if any wound appears it won’t heal, and not to do any work at home.” (FGD 1, P10)
“Used to go to funerals, might be due to that vibrations, now I don’t go inside.” (FGD 2, P4)
“Can’t go anywhere, I have to avoid it. Even if it is important … Should not hear loud sounds/vibration, it will worsen the condition.” (FGD 3, P8)
“….We avoid leafy vegetables as they informed, if we want to cure our disease we have to obey what they are saying…” (FGD 3, P5)
“I had two options, one I will die here without doing anything. Second I can survive if I agree for the surgery without considering the risk.” (FGD 1, P8)
“They asked me to go to Colombo soon, I refused as have to spend money and requested [the doctor] to send me [to a different] hospital, he replied “I will take nearly one year to do the operation. If we send, do the operation without considering the money.” Then my son booked in [private hospital] in Jaffna.” (FGD 2, P6).
“I am brave, everyone said don’t do as this is a serious operation, but I went…” (FGD 3, P5)
“Everyone knows, everyone is telling “Thunintha Kaddai” [Tamil phrase for ‘I am brave’].” (FGD 1, P4)
“Half of the treatment is faith, whereas treatment is only the other half. If we see the right thing as right only it will appear as right. If you understand correctly what to eat and what not to eat then it will be okay.” (FGD 1, P8).
“… went to Colombo for two times to do the surgery because of faith.” (FGD 1, P8)