Focus group discussions
Three FGDs each lasting approximately 90 minutes were conducted with a total of 25 participants (groups of 10, 7 and 8, respectively). Participant demographics, including employment, commodities and home districts are provided in Table 1. Most participants were aged 65 years and older (n = 11; 44%), female (n = 18; 72%) and married (n = 14; 56%). Demographics across the three FGDs were similar regarding age, sex and socio-economic status (i.e. rural/urban address).
Table 1
Participant characteristics from each focus group discussion
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
|
BA: bronchial asthma; CHF: congestive heart failure; COPD: chronic obstructive pulmonary disease; DM: diabetes mellitus; FGD: focus group discussion; HT: hypertension; IHD: ischaemic heart disease; RHD: rheumatic heart disease; VHD: valvular heart disease |
Initial open coding of the transcripts revealed 33 descriptive sub-categories, which were subsequently repackaged to form 10 categories. Categories were then linked with common themes and to the key findings of the patient pathway. Two overarching themes were identified that impeded and facilitated initial access to AF diagnosis, ongoing management, or both: (i) health seeking behaviours and (ii) atomistic healthcare structures. Both themes are underpinned by four cross-cutting sub-themes: (i) decision making, (ii) paternalistic approach to care, (iii) cost impacts and (iv) lifestyle impacts (see Fig. 2).
Decision making
Decision making describes the complex relationships between patients, families and peers and explores social constructs such as social obligation, family roles and collective decision making. Cost and access to care (related to travel) were also mentioned as influences on decision making regarding both presentation and ongoing management.
Participants were asked to reflect on what they were experiencing at the time of AF onset. Symptoms described combined both acute presentation and ongoing, even escalating symptoms, such as tiredness, breathing difficulties, increased palpitations, excessive weight loss, frequent fever and giddiness. Despite these escalating, severe clinical symptoms, several participants described reluctance to access healthcare until these symptoms impacted on their ability to work and their wider activities of daily living.
“I did not feel good during the night … it happened between four to five days, however, I consulted with the doctor on the 4th -time attack.” (FGD 1, P2)
One participant described how these broader symptoms had been misdiagnosed at initial presentation as an endemic and seasonal condition.
“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)
Participants reported that they were more likely to decide to seek healthcare if their symptoms were directly cardiac in nature compared to those who experienced more generic symptoms, including shortness of breath and or flushing/fever.
“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)
It was often family members or consultation with trusted peers that prompted healthcare being sought. Across all FGDs, it was family members (often younger members of the family) or close friends who encouraged the person to go to hospital and seek care (family roles).
“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)
Whilst there was no explicit expectation on participants to discuss health-related decisions with their peers or family, decision making to access care, and ongoing management of AF (collective decision making) was clearly favoured over individual decisions and in many instances, guidance and reassurance from family/peers was a facilitator to accessing health services.
“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)
Whilst social factors (e.g., strong, supportive, extended family connections) had a positive impact on many patients’ health seeking behaviour, for some, societal factors were a potential barrier. Some participants risked missing or delaying uptake in treatment due to social obligations, such as attending family events and funerals. In such instances, it was the positive influence of the relationship with, and trust in, clinicians that mitigated these delays (paternalistic care and trust). These categories are explored further below in the sub-theme of paternalistic approach to care.
“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
Paternalistic approach to care refers to the relationships between patients and HCPs (specifically the role and position doctors have in the community) and the relationship and trust between doctor and patient. This theme also encapsulates faith and bravery, a category which describes a strong sense of higher or external power in which participants trust that they will be well.
Throughout all FGDs, participants' description of seeking care and their ongoing health seeking behaviour was heavily influenced by their relationship with the doctor. Participants described a paternalistic approach to care, where doctors' decision making was divisive in their health seeking behaviour and treatment choices. These relationships often manifested with signs of absolute trust in the doctor's instructions, and a huge sense of gratitude for the care received, both at the time of initial AF management and longer-term management.
“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
Cost impacts describe not only the out-of-pocket expenditure and loss of income experienced by participants but also the categories of “travel” and “centralised services” as these cost the patients an abundance of time and effort to receive care. Together these factors were a barrier to seeking healthcare and attending hospital for ongoing management.
“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)
This sub-theme explores the lived experience of the pluralistic care pathways that exist in the province, and how for some patients this resulted in increased cost, possible misdiagnosis and delays in treatment. Participants described how they accessed several HCPs, including private healthcare professionals, either before or in parallel to accessing government led cardiac care services.
“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)
In several instances these centralised services resulted in patients incurring lengthy travel and financial costs and delays in specialist assessment.
“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)
Once the decision to access services was made, participants described experiencing long waiting times and the need for repeated visits to the hospital and consequently increased travel costs and a loss of working time for patients and family members, who often accompanied their relative to appointments.
“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
Participants in all FGDs described significant adjustment and disruption to their day-to-day activities resulting from their AF management. These lifestyle adjustments were predominantly restrictive in nature, permeating diet, daily activities, and limiting family and grandchildren interactions and resulted in limitations in travel and attending important social engagements (life impacts).
“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)
Whilst the paternalistic approach to care and the relationship of trust between patient and doctor was viewed positively by patients, there was some evidence that participants felt unable to challenge doctors’ instructions even when such instructions felt unrealistic or would result in limiting their social interactions and impacting their wellbeing. Unwillingness to challenge doctors’ decision making, was sometimes more influential than the potential consequences of treatment, and the actual consequences of financial burden (cost impacts) for both the patient and their family.
“....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)
In addition to trust in the doctors' guidance and the positive influence family members had in guiding patients when seeking care, discussions revealed that faith and bravery also influenced care. This self-perception of bravery positively influenced both patients’ outlook on their diagnosis and adherence to therapy.
“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)
Faith was, at least for some participants, an equally important influence on care as medical advice, and influenced participants’ perception of the success of treatment and offset the potential barriers, of increased travel and financial costs.
“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)