Sample characteristics
Of the 29 patients, 17 carers and 12 healthcare professionals who expressed interest in the study, 8 patients and 2 carers later declined and 1 patient was too fatigued. 47 participants (20 patients, 15 family members and 12 primary healthcare providers) were recruited and interviewed. Table 1 highlights the demographic characteristics of the participants. Patients were living with cancer (n=6); heart failure (n=5) post tuberculosis lung disease or MDR TB (n=5) or were post-stroke (n=4). Healthcare providers were nurses (n=7), doctors (n=3), or community healthcare extension workers (n=2) (Table 1).
Table 1
Demographic characteristics of participants
|
Patients (n=21)
|
Family caregivers (n=15)
|
Healthcare professionals (n=12)
|
Gender
|
n
|
n
|
n
|
Male
|
6
|
7
|
3
|
Female
|
15
|
8
|
9
|
Total
|
21
|
15
|
12
|
Age in years (Mean± SD)
|
54.48 ± 12.99
|
40.73 ± 16.74
|
|
Profession
|
|
|
n
|
Medical Doctors
|
|
|
3
|
Nurses
|
|
|
7
|
Community health officers or extension workers (CHOs/CHEWs)
|
|
|
2
|
Total
|
|
|
12
|
Diagnosis
|
n
|
n
|
|
Cancers
|
7
|
5
|
|
Heart failure
|
5
|
5
|
|
Tuberculosis
|
5
|
1
|
|
Stroke
|
4
|
4
|
|
Total
|
21
|
15
|
|
Years of experience within PHC [Median (Range)]
|
|
|
22 (15-26)
|
Educational level
|
n
|
|
|
No education
|
4
|
|
|
Primary
|
3
|
|
|
Secondary
|
6
|
|
|
Tertiary
|
8
|
|
|
Total
|
21
|
|
|
Relationship to patient
|
|
n
|
|
Son
|
|
4
|
|
Daughter
|
|
4
|
|
Spouse
|
|
6
|
|
Others (Daughter-in-law)
|
|
1
|
|
Total
|
|
15
|
|
Marital status
|
n
|
|
|
Single
|
3
|
|
|
Married
|
9
|
|
|
Widowed
|
8
|
|
|
Divorced
|
1
|
|
|
Total
|
21
|
|
|
Palliative care referral
|
n
|
|
|
Yes
|
1
|
|
|
No
|
20
|
|
|
Total
|
21
|
|
|
Main findings
Three main themes were developed: engaging patients and families, managing patients’ expectations, and addressing staffing related issues. Figure 1 illustrates the summary of themes.
Engaging patients and families
Patients, family caregivers and healthcare providers identified opportunities and potential constraints for palliative care delivery existing within current primary healthcare structures.
The desperation of patients and families for healthcare
After living with and enduring unresolved symptoms and other concerns related to serious illnesses patients and family caregivers were desperate for any available support to improve their quality of life, including palliative care. They described challenges in trying to access care for their concerns between their specialist appointments at tertiary healthcare facilities. They also described fears of taking inappropriate actions that might further complicate their health which often results in them presenting at the emergency unit or out-patient.
‘Yes. No matter how little the support is, no matter how little the care will be, she will be very glad and grateful for anybody that will help her.’ - Carer of patient with stage 3 Cervical cancer
Patients and families’ current use and existing trusting bond within primary healthcare
For less financially-privileged participants, public primary healthcare facilities were usually their first point of call before attending the tertiary hospital where the diagnosis of a serious illness was made. More financially-privileged individuals described their use of private primary healthcare facilities as both their first point of call for minor illnesses and last resort when systemic problems sometimes make it difficult to access care at a tertiary healthcare centre.
Participants described their existing trust and bond with primary healthcare providers established from ongoing use of these accessible facilities situated nearby. They believed that engaging in communication relating to diagnosis and prognosis, what to expect from illness course, what supports are available and how to prepare within the context of serious illnesses would be less challenging.
‘But you know family doctors now, they have been the ones we go to for malaria, typhoid, cough and cold, so he has created a bond with the family and I feel like based on that, the family will listen to him more than just anybody that just comes.’ – Carer of patient with stage 4 anorectal cancer
Patients and families’ lack of agency
When asked their priorities and what support they would like from a palliative care intervention delivered within primary healthcare, patients and their family caregivers often responded that healthcare providers should decide what kind of support to provide. Most patients described not being knowledgeable enough and would defer to what the healthcare providers judge as necessary to meet their needs. Even for those patients who wished to exercise their agency, the communication challenges they faced in interacting with their current healthcare providers meant their involvement and opinions in decisions made by healthcare providers were minimal.
‘I believe that's your work. You are the one that will know what is good for us, especially with the kind of treatment she needs.’ - Carer of patient with stage 3 heart failure
Managing patients and families’ preferences and expectations
Ease of access and use
Patients and caregivers described the need for any intervention to be easily accessible in terms of proximity to home, with a conducive and welcoming environment, short waiting times and prompt response. This was often discussed in the context of their current experience with seeking care at tertiary healthcare centres.
‘Somebody like me would prefer to go to where I would be attended to immediately rather than queue in a bigger place like this. If the quality of what I would be getting in primary health care is okay, and quality drugs, you know, just like that…’ - Patient with stage 3 heart failure
Quality of care and Staffing
Patients and family caregivers emphasised the need to improve the quality of care and the skills of primary healthcare providers. Patients highlighted the need for the palliative care provided at primary healthcare facilities to be aligned with their specialist care received at the tertiary level, fearing differing opinions or treatment. Family caregivers felt that the culture and less-pressured environment of primary healthcare mean patient monitoring may be better provided.
‘If we do that at the primary healthcare level, are we going to be consistent with the care being provided by the consultants? Are we going to be consistent with it?’- Patient with stage 4 breast cancer
Finding shared experiences, social interaction and respite
All groups of participants highlighted the role of primary healthcare space in facilitating opportunities for social interactions and shared experiences. As patients and caregivers interact with one another, this helped them to cope with social stigma of serious illnesses which are usually shrouded in mystery. Patients and carers also described the anticipated psychosocial benefits from having better access to palliative care including reduced social isolation and an opportunity to leave the house and share their concerns. Carers emphasised the current lack of home care support and their expectation of respite to help them deal with burn-out and to relieve them of their obligation while they recuperate mentally.
‘it is good. You know she is getting older. If she has a place she can be going closer to home and not just sitting at home on her concerns. It will be good. If she comes she will be able to explain her perspectives and you can discuss with her as well. That opportunity to even get out of the house will help her a lot. It is a good thing.’ - Carer of patient with stage 3 heart failure
Information, education and communication
Patients and family caregivers highlighted the importance of receiving education about the illness- causes, course and consequences, including clear and focused communication around treatment and support plans. They highlighted the difficulty they faced in communicating with specialist providers, and the need for a less pressured environment with providers who can communicate using understandable language, listen to their concerns and educate them. Participants expected healthcare providers’ attitude and approach to communication to be open, patient, and supportive. They emphasised this can foster a sense of shared understanding of their needs and goals of care, manage their expectations concerning the course of the illness and plan appropriately for eventualities.
‘It will be very helpful because even the way you are talking and explaining things, it is different from the doctors here and if we can hear the explanations, it will help us to be more conscious of what we need to do to support mama and to understand her condition.’ - Carer of patient recovering from stroke
Addressing staffing-related issues
Inconsistent perception of the competence and function of PHC
Some patients and carers feared that the primary healthcare level was staffed by lay healthcare workers and that care was rudimentary and of lesser quality compared to secondary and tertiary care. However, others, in agreement with healthcare providers, reported that primary healthcare facilities are already staffed by qualified healthcare providers (i.e. nurses and doctors) supported by trained community healthcare workers. However, healthcare providers acknowledged that the facilities do not always have the appropriate staffing ratio, with shortages of nurses and doctors in many facilities. They felt that the resulting pressure sometimes affects care quality. They further highlighted the need to be trained to provide palliative care for patients.
‘That will be good. At least it will be closer to home. However, I do not know whether the doctors and nurses there will be able to handle my condition because even the general hospital that I went referred me here. That said, if they will be able to attend to me at least that will reduce the burden a lot.’- Patient with stage 3 cervical cancer
Inter-professional distrust about working within competencies
The participants’ responses also revealed a constant tension between healthcare provider cadres due to the lack of a clear definition of roles, responsibilities, and limits of competence. This distrust is majorly directed at the community health officers and community health extension workers (CHOs/CHEWs). Nurses were concerned that this category of healthcare providers see themselves as equally competent as nurses despite having different training. This creates an atmosphere of rivalry with the patients at the receiving end. Doctors and nurses reiterated their worries about the competence of the CHOs/CHEWs to deliver care out of hours, to deliver care for patients with serious illnesses, to follow care plans designed by the nurses and to work within the limits of their competence. They provided instances where they have been forced to cover up problems created by the CHOs/CHEWs.
There was also a pattern of vertical interprofessional distrust within the healthcare system. Primary healthcare level providers suggested that tertiary and secondary level providers do not trust them to competently deliver care for patients with serious illnesses and hence fail to refer patients back to them after stabilising any exacerbations. This meant they usually did not hear back from patients referred to the higher level of care, losing most patients to follow up in the community.
‘It's not to say we can't treat them, but hmmm... and it's when we that are registered are around and some of these people that are capable. If another person mishandle them that will cause another problem for them, and they are not...we cannot say we are proud of most of the care work that they do here and be able to monitor them. That is where the problem is.’ - Nurse at primary healthcare
Primary Healthcare providers’ response to serious illnesses
Primary healthcare providers explained that their first response to patients with serious illnesses is to refer them to other levels of care for treatment. They highlighted that they currently only have resources to support some patients with HIV or TB. Orientation of primary healthcare towards the treatment of minor acute and not chronic illnesses has informed the perception of the limits of their care at this level. Therefore, some healthcare providers did not feel they have a role to play in the ongoing management of patients with serious illnesses, with care rarely focused on long term management, reluctance to dying process, administrative and legal implications from patients dying at the primary healthcare level and a shortage of qualified healthcare providers such as nurses and doctors.
‘And as you also know, in primary health care, we try as much as possible to avoid any form of death. We are not here to just be recording death -death. If a patient needs an higher care, let the patient go as much as possible.’ – Doctor at primary healthcare
We already do this somehow
Some healthcare providers acknowledged that they have no prior knowledge of what palliative care entailed. They variously described it as focused on pain management, rehabilitation, relief of symptoms or end-of-life care. However, they felt that they already perform some palliative care activities e.g. managing physical symptoms such as uncomplicated pain, nausea and diarrhoea, delivering health education to patients, and providing counselling support to families.
‘At least if we have malaria patient, the relatives too, they are disturbed, they have anxiety, and so on. And we take care of it. So if these patients too are around us, we know how to take care of it, if we can allay the fear of those other patients, we can allay their own fear too.’ – Nurse at primary healthcare