A qualitative study of the palliative care needs of primary care patients with COPD: Experiences of COPD patients,their families and healthcare professionals

Abstract

Background:

The majority of deaths from chronic obstructive pulmonary disease (COPD) occur in low- and middle-income countries. Primary palliative care is commonly proposed as the best model to ensure access to appropriate care. However, the existing evidence on needs, models and outcomes comes from high-income settings. The purpose of the study was to determine the experiences of adults with COPD attending primary care, their informal caregivers and healthcare professionals to identify current care provided and gaps in this care in primary care settings in South Africa.

Methods:

Cross-sectional qualitative interview study collected in-depth data from three stakeholder groups: adults with COPD attending one of five primary care settings, informal carers of patients and healthcare professionals. The cross-national research team developed a coding frame through inductive thematic analysis.

Results:

The study participants comprised 22 COPD patients, 19 family caregivers and 22 healthcare professionals. Four main themes emerged. (1) Importance of communication to quality primary palliative care, with poor health literacy regarding the diagnosis and its progression. (2) Symptoms and concerns among patients and caregivers, with multidimensional impact on social participation, poverty and family mental health. (3) The role of health systems in promoting quality primary palliative care, with unreliable drug supply, the need for rapid access pathways during exacerbations and continuity of care from the acute sector through primary care into the home. (4) Patient preferences and agency, with patients favouring holistic assessment, self-management and adequate information and consultation to participate in decision-making.

Discussion:

Palliative care health literacy for COPD patients, families and staff attending primary settings may ensure well-planned continuous care, symptom management and support care at home.

Keywords

COPD palliative care primary care South Africa

Background

The Global Burden of Disease Study (2021) reported a shift in disease burden from communicable, maternal, neonatal and nutritional diseases to non-communicable diseases (NCD), with this shift being greatest in sub-Saharan Africa. The report notes that by 2050, the top four NCDs will be ischaemic heart disease, stroke, diabetes and chronic obstructive pulmonary disease (COPD).¹

An earlier study had identified this trend, in surveying 23 low-income and middle-income countries (LMICs), and identifying that mortality in these countries accounted for “80% of deaths from NCD in all LMICs in 2005, and 50% of the total burden of disease.”² The WHO’s global burden of disease data estimate that, in 2019, 212.3 million adults were living with COPD.³ The WHO report that COPD is the fourth leading cause of death worldwide and that nearly 90% of COPD deaths of people under the age of 70 years occur in LMICs.^4,5

COPD patients often experience exacerbations of their disease which require hospitalisation. After the first hospitalisation, half will die within 3.6 years.⁶ Evidence from a systematic review on utilisation and costs of services among advanced COPD patients found frequent hospitalisations, intensive care unit stays, primary care consultations and medication prescription, as well as a lack of palliative care services.⁷ A systematic review of patient and caregiver views on palliative and end-of-life care reported multidimensional symptoms and concerns.⁸ Most of these patients experience physical symptoms such as pain, breathlessness and may require support with psychosocial or spiritual problems as their disease progresses.⁹ However, this evidence has been collected in high-income countries (HIC).

A study of symptom prevalence and burden among adults with COPD attending primary care in South Africa (SA) found high prevalence of pain (79.3%) and worry (65.5%).¹⁰

The WHO estimated that in South Africa, the burden of NCD is two to three times higher than in developed countries.¹¹ In Africa, COPD has a prevalence rate of around 13.4%, and 20% in South Africa.^12,13 COPD can lead to greater financial hardship,¹⁴ which has significant implications for patients and families in LMICs.

There is a range of aetiologies recognised as contributing to COPD in LMICs, including tobacco smoking, pulmonary tuberculosis (TB), occupational dust exposure, biomass fuel smoke exposure from cooking and heating, other forms of air pollution and respiratory infections in childhood.¹⁵ Although tobacco smoking is a risk factor for COPD in LMICs, between a third to a fifth of cases in LMICs occur in people who have never smoked.^16–18

The gold standard for the diagnosis of COPD is a diagnosis by spirometry,¹⁹ which is recommended in South African guidelines.⁵ However, access to or uptake of spirometry for such diagnosis is known to be a challenge in primary care settings, in both HIC^20,21 and LMICs.^22–24 In South Africa, primary care is the recommended level and practical place of care for the majority of patients with COPD,²⁵ but spirometry is only routinely available in tertiary care settings. This means that patients in South African primary care settings most commonly only have a clinical diagnosis of COPD, rather than the recommended formal diagnosis by spirometry.¹²

The focus of a health systems strengthening response to increasing prevalence and mortality from NCD should be on primary care to improve outcomes and reduce inequity.^26,27 Primary care utilisation for chronic disease management can improve patient outcomes and reduce costs,²⁸ providing holistic person-centred care to reduce secondary and tertiary care use. A recent systematic review and thematic synthesis appraised the current evidence related to primary palliative care in LMICs.²⁹ It concluded that evidence supporting primary palliative care in LMICs is limited, and that health systems in LMICs have unique strengths and needs that should guide how services evolve to meet current and future needs.²⁹

Problem statement: A palliative approach to the care of patients with COPD has been found to be beneficial for patients with more advanced disease (such as grades 3 and 4 disease).³⁰ This is recommended to occur early on in the disease course and alongside the standard of care for COPD disease management.^31,32 Therefore, the integration of a palliative approach to symptom management, alongside standard of care in the primary care setting, is recommended as appropriate and necessary.³² However, in South Africa and in many LMICs, palliative care is not yet integrated into primary care settings and is not commonly considered for people living with chronic diseases.

Although initially palliative care in SA was provided by non-governmental organisations/hospices, the SA government responded to the World Health Assembly resolution on palliative care by developing the National Policy Framework and Strategy for Palliative Care to guide integration of palliative care into the health system.³³ There have been some efforts to increase access to palliative care, mainly through basic training of healthcare professionals (HCPs). In the Western Cape province, where this study was conducted, there is a palliative care task team in the Western Cape Department of Health and Wellness working to progressively include palliative care into all care settings, including primary care clinics. Palliative care has traditionally been focused on cancer care and HIV care. This is the first study addressing the concerns regarding access to palliative care for COPD patients in South Africa.

We report here the qualitative findings on the experiences of adults with COPD attending primary care, their informal caregivers and HCPs on the care needs of patients and their family members, and the preferences of all stakeholders for the management of palliative care needs within primary care settings in South Africa. The study forms part of a larger programme of health systems strengthening research in sub-Saharan Africa (ASSET), including the palliative care study of integrated palliative care and primary healthcare.^34,35

Methods

This cross-sectional qualitative study recruited stakeholders to take part in in-depth interviews. Participants were recruited through purposive sampling from the participants in the first phase I of the study. Phase I of the study investigated the prevalence of symptoms and concerns amongst people living with COPD, with a sample size of 385 participants.¹⁰ This qualitative study is reported in line with COREQ (COnsolidated criteria for REporting Qualitative research) guidance (Supplemental Material).³⁶

Participants

We sampled from three stakeholder populations.

First, adults (aged at least 18 years) attending a primary care facility with diagnosed COPD and able to communicate in English, Afrikaans or Xhosa. Patients who were housebound and unable to attend primary care facilities were excluded from the study.

Second, adult caregivers identified by the COPD patients in line with the definition of caregiver, “unpaid, informal providers of one or more physical, social, practical and emotional tasks. In terms of their relationship to the patient, they may be a friend, partner, ex-partner, sibling, parent, child or other blood or non-blood relative.”³⁷

Third, HCPs delivering direct care to COPD patients in a primary care setting as part of their routine practice.

Setting

The study was conducted in five primary care facilities representing heterogeneous models from different sub-structures in the Cape Metro in the Western Cape, South Africa. The primary care models were: two 24-h community health centres with emergency units (EUs); two 8-h community health centres with emergency rooms and one primary care district hospital.

Procedure

Three bi- or tri-lingual research assistants, who were all female, were trained on the theory and practice of research ethics and on procedures of the study protocol. They had previous research training to the level of a master’s degree. They introduced the study to staff at study sites, and treating clinical teams identified potential, then introduced them to the research assistants. The research assistants provided study information to COPD patients and their caregivers and answered any questions before taking informed consent. No personal information or characteristics regarding the interviewers were included other than the fact that they were undertaking the research on behalf of the University of Cape Town. This study is the qualitative phase of a larger study that applied the Medical Research Council Framework for the development and testing of complex interventions.³⁸ Purposive sampling was applied by approaching participants in the main study who met the study criteria face-to-face at the clinics and interviews were conducted at these sites. Participants enrolled in phase I of the ASSET study were invited to take part in the qualitative interviews and additional informed consent was taken for the qualitative study. Participants were recruited with consideration for information power on the basis of the aim of the study and good quality dialogue with a diverse range of stakeholders.³⁹ Information sheets and consent forms were available in English, Afrikaans and isiXhosa. Facility staff were directly approached by the study researchers to provide fully informed voluntary consent.

The topic guide for patients and family caregivers addressed the needs and concerns of adult patients with COPD attending primary care; what would make care more patient-centred and how could palliative care be delivered; current self-management practices; preferences for discussion regarding advance care planning and communication practices; views on potential intervention components; decision-making and drivers of EU attendance. The interview guide was not piloted. Interviews were conducted and audio-recorded by the research assistants (J.H., O.M., Z.W.), who also took field notes. J.H., O.M. and Z.W. are female researchers with a master’s degree. Interviews were between 24- and 45-min duration. No other people were present at the interviews. There were no repeat interviews.

The guide for healthcare staff addressed: potential value of patient-centred palliative care for adults with COPD attending primary care; barriers to primary care staff delivering primary palliative care and staff training/mentorship needs; leadership requirements: implementation of integrated palliative care; communication skill needs; anticipated challenges and benefits.

Data management and analysis

Interviews were transcribed verbatim using a clean verbatim transcription approach and then translated into English. They were not returned to participants for comment. Pseudonyms are used to identify the participant as patient, professional or family caregiver, with the first two numbers identifying the study site and the second two numbers identifying the participant number at that site. Translated transcripts were imported into NVivo version 12 for inductive thematic analysis by the research team in South Africa, following the method described by Braun and Clark.⁴⁰ The thematic analysis started with becoming familiar with the data. Eight transcripts (four patients, two caregivers, and two professionals) were based on the interviewer’s reporting of information-dense interviews. Following familiarisation with the data within these eight transcripts, each transcript was reviewed by two of four South African researchers (L.F., L.G., J.H., O.M.) who identified initial codes inductively. The four researchers met as a group and discussed the codes. This discussion developed a coding framework with suggested themes and subthemes. This was further discussed and agreed with the cross-national research team. Reading for familiarisation with all remaining transcripts was conducted and the agreed frame was applied to the full dataset, and additional emergent subthemes were incorporated by researcher’s discussion into the overall coding frame to ensure consistency across the full dataset. At each stage of coding, the question of data saturation was discussed. The researchers also discussed the scope of information collected and decided that sufficient information was reached.³⁹ Participants did not give feedback on the findings. Selected data with anonymous participant identification codes are presented below from the breadth of the sample.

Results

Sample characteristics

In total, 193 potential participants were informed about the study and 130 refused mainly because of reluctance for audiotaping. We recruited, conducted and analysed data from interviews with 22 COPD patients, 19 family caregiver participants and 22 HCPs from five primary healthcare facilities. None of the participants dropped out. Patient participant age ranged from 31 to 69 years. The HCPs included 12 doctors, 5 nurses, 3 pharmacists, 1 operational manager and 1 clinical manager. None of the patient participants were recipients of palliative care. See Table 1 for participant characteristics.

Table 1.

Participant characteristics.

Demographics	Patient participants (n = 22)	Caregiver participants (n = 19)	Healthcare professional participants (n = 22)
Age in years
Mean years (SD)	57.5 (11.56)	45.16 (13.97)	41.45 (9.26)
Marital status			n/a
Single	5	7
Married	13	8
Divorced/Separated	4	3 (1 missing)
Highest educational level			n/a
None	0	1
Primary school	2	2
Secondary school	18	15
College/University	2	1
Caregiver relationship with the patient	n/a		n/a
Son		1
Daughter		3
Husband		1
Wife		2
Partner		1
Sister		2
Niece		1
Grandchild		1
Healthcare profession	n/a	n/a
Nurse			5
Doctor			12
Pharmacist			3
Clinical manager			1
Operational manager			1

Main findings

We identified four main themes (see Table 2): (1) Importance of communication to quality primary palliative care, (2) COPD-related symptoms and concerns among patients and caregivers, (3) the role of health systems in promoting quality COPD primary care, (4) patient preferences and agency.

Table 2.

Summary of main themes and subthemes.

Themes	1. Importance of communication to quality care	2. COPD-related symptoms and concerns among patients and caregivers	3. The role of health systems in promoting quality COPD care	4. Patient preferences and agency
Subthemes	1.1 Patient – HCP communication	2.1 Impact on function	3.1 Health system issues	4.1 Access to care
	1.2 Family – HCP communication	2.2 Psychosocial issues	3.2 Goals of care	4.2 Communication preferences
	1.3 Information shared	2.3 Financial impact	3.3 Health facilities	4.3 Self-management and coping strategies
	1.4 Patient education	2.4 Stigma	3.4 Discharge planning

HCP, healthcare professional.

Theme 1: Importance of communication to quality care

We identified four subthemes under this theme: (1) Patient-HCP communication, (2) Family-HCP communication, (3) Information shared and (4) Patient education.

1.1. Patients reported that the tone and content of communication were dependent on the HCP concerned. They reported good experiences of communication with both doctors and nurses, but also that the communication is sometimes of a tone and quality that they find distressing.

. . .there are those that are nice; there are those that are not nice. (Patient 04-02)

1.2. Many family caregivers had never had the opportunity to meet with HCPs involved in the patient’s care as few accompanied patients to health facilities. However, some caregivers chose to attend the facility with the patient to improve the communication as patients have experienced rudeness and feel vulnerable even in the healthcare setting.

People are very rude, that is why I come to the hospital with my father because my mother will just . . . fade away. She will just try to cry. (Family Caregiver 03-08)

1.3. Information regarding diagnosis that patients received from primary care HCP was described as variable in its detail. More detailed information was shared by HCPs during an admission. However, HCPs reported educating patients about their diagnosis and recognised the importance of quality communication for patient understanding. Limited prognostic information was given to patients, and HCPs made decisions without patient involvement.

They never told me that my lungs are wrong and what- what. (Patient 03-04)

That time [at primary care clinic], I did not know I had this but when I went to the big hospital, like [name of tertiary hospital], there I had found out I got COPD. Before, in that period . . . I used to use the pump but they did not tell me. . .. (Patient 03-01)

1.4. Patients reported that HCPs emphasised to them the importance of stopping smoking, but the information on how to stop smoking was sparse. HCPs, doctors and pharmacists describe providing education on the use of inhalers. HCP described patients’ inhaler use for acute exacerbations rather than as a preventive. HCP described the need to explain the chronic nature of COPD, with poor community knowledge of COPD and its risk factors.

The doctors “say I must stop smoking tobacco. I ask him/her, how will I stop it? I don’t know how.” (Patient 03-03)

that it is why we are trying to teach them how to use the pumps effectively, so they do not have to come as an emergency. (Professional 08-01)

Theme 2: COPD-related symptoms and concerns among patients and caregivers

We identified four subthemes under this theme: (1) Impact on function, (2) Psychosocial issues, (3) Financial impact and (4) Stigma.

2.1 Patients and caregivers described physical symptoms that impacted their quality of life. Breathlessness on exertion limited ability to mobilise and function normally. The worry experienced by caregivers during the night impacted their ability to sleep well and to awake feeling rested.

I cannot go run for [the] train. The train must pass, because of my breath and I am looking for breath and I am standing but then I stand there, and I stand, and I relax and then I know for a fact that it is going to go over. (Patient 01-05)

2.2 Participants described social limitations, reduced activities of daily living and emotional distress having a great impact on their lives, including worry, fear, sadness and fear in relation to situations of acute breathlessness. Regret and loss were also described regarding the impact of lifestyle choices on patients’ health. The limits placed on the patient’s social life and social interaction have emotional consequences for the patient.

We are not really out-going, but we do socialise when the children have functions and when the family has a function. (Family Caregiver 07-01)

And it’s not nice for him because he really wants to . . . he wants to work for me but. . .. (Family Caregiver 03-07)

. . .with all [these] children coming into your home living there and doing all the other kinds of things it is not healthy. And you have got to feed them all the time with your money,. . ..I mean that is also causing him the anxiety, the panic attacks, which makes it all and when that starts it is like the pain, he is in severe pain. (Family Caregiver 01-03)

Social challenges that relate to certain areas in the Cape Town metropolitan area, such as gang-related violence, also influenced which health facility patients used. As indicated by one participant.

The reason why I am attending here is because that other hospital is situated in gang land. (Patient 01-05)

Prevalent socioeconomic realities were reported where basic food security could be routinely compromised. The lack of finances was also reported as impacting access to care because of the need to pay for a taxi or other transport to the facility for emergency and non-emergency visits for patients unable to walk the distance. Limited financial resources were further stretched when patients stopped working due to their disease and then their caregivers also had to stop working to be able to provide the needed care. Patients and caregivers reported paying out of pocket for medication for symptom relief on occasion, even while chronic medication is provided by the healthcare service free-of-charge. Social relief grants were reported as helpful but limited.

I am always busy and always have to think where is the next meal coming from because most of the money that my wife earns goes for the debt and the travelling. (Patient 03-08)

I used to work in the previous years before he got sick. (Family Caregiver 04-01)

so, what you will find now it puts a strain on what do we cut from grocery list? (Family Caregiver 04-02)

2.3 Patients described financial hardship attributed to the functional limitations of their disease and being unable to work. These challenges were corroborated by HCP, who described patients paying out of pocket for medication to manage their disease. Financial hardship also reduced their ability to attend the healthcare facility. Sometimes there is a delay in getting an ambulance, so that when a patient was acutely breathless, it was necessary to pay for a taxi or a neighbour for transport to the hospital.

I don’t have funds to get a taxi or to Uber or any form of transportation, or to hire someone to bring her in quickly enough or the ambulance does not respond quickly enough . . .. If I call for an ambulance right, and an ambulance can respond anything from between 6 to 12 hours. (Family Caregiver 04-02)

2.4 A few participants experienced stigma affecting their employment, stigma in the community and stigma from HCPs because of their smoking habit. Stigma and judgement emanate from some HCPs who saw COPD as self-induced and as such this affects some professionals’ view of the patients.

my friends. . .they don’t even come to me, the close ones because what we don’t get along because of, it’s smoking. (Patient 04-01)

Theme 3: The role of health systems in promoting quality COPD care

We identified four subthemes under this theme: (1) Health system issues, (2) Goals of care, (3) Health facilities and (4) Discharge planning.

3.1 Challenges were described in accessing care (especially free-of-charge) and in seeing a clinician during exacerbations without an appointment. The clinic folders that contain patient histories were considered an important resource, not always available.

I would always be the one to come home and say, you know what my appointment was for 7 o’clock and they could not find my folder and then. . . [delay and waiting]. (Family Caregiver 07-01)

And even if you come here, you see how the people are sitting here. I do understand the nurses and the doctors are little, but why must you sit like this when you do not have an appointment. You have to wait. (Family Caregiver 03-05)

I do not want to say that . . . but sometimes he sits so long here at the hospital waiting to be helped or waiting for pills, stuff like that. And sometimes he is sick when he sit here. (Family Caregiver 03-07)

The desire to have home oxygen seemed to be common for patients with more advanced disease, recognising that the process to get home oxygen was arduous, as current policy requires home oxygen to be prescribed at the tertiary hospital level. In addition, home nebulisation equipment and medication are not available from the health facility.

My main needs will be having oxygen tanks, nebulisers which the hospitals do not supply any more. If I had a nebuliser or oxygen tank, life would have been much easier for me, much, much easier for me. (Patient 01-02)

Having a wheelchair sticker on the patient’s clinic card had dramatically increased the speed of access and quality of care.

They help you quick, they are very friendly. Most of the people which I see, they are friendly and they are very helpful. Since they have just changed the wheelchair thing with the card. (Family Caregiver 03-08)

Patients rely on their health facilities for the supply of medication. When there are medication stock-outs or supply problems, patients tend to worry and may struggle with symptoms at home, and some may need to come into the clinic more regularly for oxygen and nebulisation. Another problem raised was the insecurity patients and caregivers felt if medication was changed in any way.

3.2 A caregiver described that the goals of their care and approaches to patient consultations seemed to differ among HCPs. Participants described some doctors focusing on administrative issues and repeat prescriptions, while others take a more holistic approach and ask about the patient’s experience to provide whole-person care.

The doctors, when they see you, some doctors will be hands on. . . .. . .Some of them they just prefer the administrative aspect of consulting, looking at what has been written by the previous doctor and simply copying that over onto the next script, some of them do that. (Family Caregiver 01-13)

3.3 Patients with more advanced disease often relied on the emergency room during acute dyspnoeic episodes, with some describing regular visits to the emergency room. Emergency care was attended frequently by patients who did not attend routine follow-up primary care appointments. Patients usually experienced prompt treatment in the emergency care unit and felt secure attending there.

Especially when I am here at [emergency care]. . . .. I get helped quickly. . . . Everything is done quickly, quickly. I get helped fast. (Patient 04-02)

In contrast, patients and caregivers were less satisfied with experiences in primary care outpatient departments (OPD) and clinics and described how a lack of communication or even of physical examination concerned them. However, the approach to care was HCP-dependent, as some OPD staff provided care that was seen to be person-centred and responsive. Care in the hospital seemed to be generally appreciated and well-rated, although the lack of continuity of care once discharged from the hospital was a concern. Discussions around prognosis and advancing disease were perceived to be more likely to occur in the inpatient setting than in the outpatient or emergency department setting.

. . .[tertiary hospital], very good, excellent but then at the clinic side, [district hospital], I will rate them three, but the main thing the clinic where I go the most, very bad, very bad. (Patient 01-02)

3.4 Limited support was described for patients and families when not able to attend their healthcare facility in person, with little discharge planning or access to community care. Professional participants spoke of the option to refer for home-based care, but only one patient reported access to home-based care or community care workers.

From a support side, we don’t. We fail them significantly because we are not able to give them that support that they really need. And often it is just a case of talking to them. . .. (Professional 01-02)

Theme 4: Patient preferences and agency

We identified three subthemes under this theme: (1) Access to care, (2) Communication preferences and (3) Self-management and coping strategies.

4.1 Following direct enquiry regarding proposed but theoretical changes to care, patients and caregivers wanted clinic systems to address waiting times as part of improved access to quality care, describing waiting as the hardest part of the facility experience when acutely breathless, especially at night during cold ambient temperatures. Access to care through improved transport systems is particularly important for the elderly and those with advanced disease. Separate facilities for COPD patients were proposed to protect patients from infection, such as TB. A breathlessness clinic was suggested by the research team and was well received by patients and caregivers, although there was anxiety about how accessible this would be for people with advanced COPD.

We discussed many a time that we need a little room, just for our COPD patients for when we need the nebulizers and nice comfortable chairs. Because now at the moment we have got the small little ER (emergency room) and then the one patient had to wait for the other patients to finish to be put on a nebuliser. (Professional 07-03)

I guess the worst part is sitting there in the hospital waiting in the queue all day for your name to be called out. That is probably the worst part and sometimes the doctors do not listen to you. (Patient 01-03)

4.2 Patients and caregivers spoke of the need to be listened to and to be treated with respect to ensure personal dignity, and to ensure that their needs are expressed and met. They commonly mentioned the frustration associated with a lack of information regarding their illness and treatment, including more advice on how to stop smoking.

And dignity because even though she is old. We do not have a lot of money we still need to have respect; we still need to be treated with dignity. I think it is everyone who comes to this day hospital they want to be treated with respect and dignity. (Family Caregiver 03-11)

They must really listen to another person’s needs. . . . That is the main thing that I feel must sometimes change. (Family Caregiver 03-08)

Although counselling was identified as important by patients, caregivers and HCPs, none reported receiving or providing dedicated counselling. Facilities described as having limited counselling resources or time to address emotional support needs.

I do not expect them to give them emotional support because they are busy so they have to go through a lot of people in a day so I do not expect them to do that. But then again I do think that they need to add something like that. (Family Caregiver 03-11)

I think my mom could do with a counsellor. . . .. Obviously she is scared. We are religious, so we do pray but she is afraid. So, I think somebody to speak to besides myself I think would be ideal for her. (Family Caregiver 01-02)

4.3 Better symptom control was a priority. Acute breathlessness was described as a very distressing and frightening symptom for patients. Patients described useful symptom self-management strategies such as the use of a breathing technique taught by their doctor, open windows and air flow, having water to drink, regulating the ambient temperature and dressing to keep cool.

I had the doctor gave me – in (name) gave me a breathing exercise which I have to do every morning, and I think that was a great help. (Patient 01-04)

Exercise was seen as a potentially effective intervention. Home visits to teach the patient rehabilitation exercises were preferred to an additional outpatient appointment. Caregivers should be involved in breathing and relaxation self-management techniques to support and remind the patient of the techniques taught.

If somebody could come here and show us that would be good. . . .. I am not sure if they do home visits, because as I said she cannot really go out. (Family Caregiver 01-02)

They would be learning something about their health, how to cope with it and that would be like taking their mind off what is happening at home for that period of time but also teaching them how to cope with what is going on at home. So that will be a huge help for them. (Family Caregiver 03-11)

But sometimes you cannot, you try to relax but you cannot. Your shoulders, it is up there, it is like this. . . . Because that time, is a time when you do not know how to relax yourself. (Patient 03-01)

Discussion

The data reveal challenges and opportunities in enhancing palliative care delivery within primary care settings for adults with COPD that have not previously been considered in the South African setting. First, the needs of patients and families are broad. The prevalent baseline socioeconomic challenges, such as very limited financial resources and the risk of food insecurity, which are experienced by the patient population in this setting, increase their vulnerability in being able to manage their illness and cope with their multidimensional needs. The clinical symptoms have a profoundly negative effect on the social and psychological wellbeing and carry profound further economic implications for the family unit. A truly multidimensional and person-centred approach with integrated palliative care is clearly needed.

Simple systems improvements could include fast-tracking appointments for known COPD patients and providing appropriate space to COPD patients experiencing exacerbations, and ensuring continued access to support when it is not possible to physically attend (including the use of rehabilitative self-management). In recognition of these challenges, there is currently an initiative for improved administration for appointments and service provision in South Africa, including protocols and guidelines for care, according to the Ideal Clinic approach; however, implementation of this approach remains a challenge.⁴¹ Further, the restrictions on prescription of palliative oxygen provision potentially increase the service use and cost of primary and urgent care services and could be revised, although costing studies would be required to formally assess this.

Specific skills in communication, holistic assessment and symptom control, and inclusion of patient views are essential.⁴² As identified in reviews, communication regarding the illness, its management (including use of nebulisers) and prognosis was not adequate to meet patients’ information needs and is poorer than that provided to cancer patients.^43,44 Limited patient understanding of disease and treatment and the subsequent effect on pharmacological adherence is understood to be a challenge even in HIC,⁴⁵ while globally primary care for patients with COPD is not typically guideline compliant.⁴⁶ In addition, the quality and continuity of the interaction between patients with COPD and primary care HCPs in a HIC has been shown to influence the potential self-management confidence and efficacy,⁴⁷ further highlighting the need to support HCPs and manage health systems appropriately for patient benefit where resources are limited. However, HCP educational interventions have not been shown to be consistently effective in improving patient care and outcomes.⁴⁸

Our study is unusual compared to the existing literature as it was conducted in sub-Saharan Africa and an appropriate response will need careful consideration of context, culture and varying literacy levels. Data on what constitutes patient-centred care within non-Western cultures has been lacking,^49,50 and data from diverse LMICs provide the opportunity to expand existing practice frameworks.⁵¹ Prior research into advance care planning in South Africa has revealed the need to adapt common palliative care practices to both culture and context.⁵² Access to pulmonary rehabilitation, which would be able to address some patient needs and health system impacts reported in this study, is limited at best in primary care settings in South Africa, as in other LMICs.⁵³

This research provides a foundation for research into palliative care for patients with COPD and other chronic diseases. This study contributed to the design of a study investigating the feasibility of integrating palliative care into primary care and to a further study considering palliative care for other chronic diseases in this setting. It will contribute to improved practice and policy development to support primary palliative care. It also informs the work on primary palliative care in LMICs.

There are a number of limitations to our study. Although the study design seeks to understand the breadth of the topic rather than be representative, it was only conducted in one region of South Africa. We also recognise that it may be difficult for participants to give their perspectives on the best features of a proposed model of care, that is, primary palliative care, which they may have no prior experience of. Lastly, given the lack of research data from LMIC in this field, it is necessary to undertake similar investigations in other cultures and health systems.

Conclusion

Palliative care and health literacy for people with progressive illness is crucial to ensure well-planned care, symptom management and to maintain people in the community.⁵⁴ Recommendations derived from study results include palliative care training for HCPs to enhance communication with patients, improve symptom management and provide support and linking patient care to community-based services. Skilled primary care staff and empowered, informed COPD patients may offer a route to better outcomes. For patients with symptomatic disease, there appears to be an opportunity to enhance the attention to detail in patient communication, education on disease management and prognosis, and the support of symptom self-management. In addition, there is an opportunity to enhance community care support to improve continuity of care. Individualised and person-centred palliative care integrated into standard primary care has the potential to address and support improved COPD patient care.

Supplemental Material

sj-pdf-1-pcr-10.1177_26323524251390910 – Supplemental material for A qualitative study of the palliative care needs of primary care patients with COPD: Experiences of COPD patients, their families and healthcare professionals

Supplemental material, sj-pdf-1-pcr-10.1177_26323524251390910 for A qualitative study of the palliative care needs of primary care patients with COPD: Experiences of COPD patients, their families and healthcare professionals by Liz Gwyther, Lindsay Farrant, Joy Hunter, Olona Mzimkulu, Kennedy Nkhoma and Richard Harding in Palliative Care and Social Practice

Footnotes

Acknowledgements

We acknowledge and appreciate the collegial welcome from staff at study sites and encouragement in conducting recruitment of participants and collection of data. We are grateful to respiratory physician Dr Richard van Zyl Smit for his guidance, and to participants in this study.

ORCID iDs

Liz Gwyther

Lindsay Farrant

Kennedy Nkhoma

Richard Harding

Ethical considerations

The study had ethical approval from the University of Cape Town, Faculty of Health Sciences, Human Research Ethics Committee (HREC 211-2018) and Kings College London Health Faculties Research Ethics Subcommittee (HR-17/18-5766) and permissions were given by the Western Cape Department of Health and facility managers to conduct research at the specified study sites.

Consent to participate

Participants provided informed consent during the recruitment process.

Author contributions

Liz Gwyther: Conceptualisation; Data curation; Formal analysis; Investigation; Methodology; Project administration; Resources; Supervision; Validation; Writing – original draft.

Lindsay Farrant: Conceptualisation; Data curation; Formal analysis; Investigation; Methodology; Project administration; Software; Supervision; Writing – review & editing.

Joy Hunter: Data curation; Formal analysis; Investigation; Methodology; Software; Writing – review & editing.

Olona Mzimkulu: Data curation; Formal analysis; Investigation; Methodology; Software; Writing – review & editing.

Kennedy Nkhoma: Conceptualisation; Formal analysis; Project administration; Writing – review & editing.

Richard Harding: Conceptualisation; Funding acquisition; Investigation; Methodology; Project administration; Resources; Supervision; Validation; Writing – original draft.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This research was funded by a grant from the National Institute of Health Research (NIHR) Global Health Research Unit on Health Systems Research in sub-Saharan Africa, King’s College London. Grant number GRU 16/136/54 using UK aid from the UK Government to support global health research.

Declaration of conflicting interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Data availability statement

Available on reasonable request to lead author Liz.Gwyther@uct.ac.za.

Supplemental material

Supplemental material for this article is available online.

References

Vollset

Ababneh

Abate

, et al. Burden of disease scenarios for 204 countries and territories, 2022–2050: a forecasting analysis for the Global Burden of Disease Study 2021. Lancet 2024; 403(10440): 2204–2256

Alwan

Maclean

Riley

, et al. Monitoring and surveillance of chronic non-communicable diseases: progress and capacity in high-burden countries. Lancet 2010; 376(9755): 1861–1868.

Global Burden of Disease Collaboration Network. Burden of Disease Study 2019 (GBD 2019) Results. Institute for Health Metrics and Evaluation (IHME), 2019.

World Health Organisation. Chronic obstructive pulmonary disease (COPD) Fact Sheet, 2024. https://www.who.int/news-room/fact-sheets/detail/chronic-obstructive-pulmonary-disease-(copd). Accessed 8 March 2025.

Abdool-Gaffar

Calligaro

Wong

, et al. Management of chronic obstructive pulmonary disease: a position statement of the South African Thoracic Society: 2019 update. J Thorac Dis 2019; 11(11): 4408–4427.

Suissa

Dell’Aniello

Ernst

Long-term natural history of chronic obstructive pulmonary disease: severe exacerbations and mortality. Thorax 2012; 67(11): 957–963.

Faes

De Frène

Cohen

, et al. Resource use and health care costs of COPD patients at the end of life: a systematic review. J Pain Symptom Manage 2016; 52(4): 588–599.

Mathews

Johnston

Palliative and end-of-life care for adults with advanced chronic obstructive pulmonary disease: a rapid review focusing on patient and family caregiver perspectives. Curr Opin Support Palliat Care 2017; 11(4): 315–327.

Moens

Higginson

Harding

, et al. Are there differences in the prevalence of palliative care-related problems in people living with advanced cancer and eight non-cancer conditions? A systematic review. J Pain Symptom Manage 2014; 48: 660–677.

10.

Nkhoma

Farrant

Mzimkulu

, et al. High prevalence and burden of physical and psychological symptoms in a chronic obstructive pulmonary disease population in primary care settings in South Africa. Int J Chron Obstruct Pulmon Dis 2023; 18: 1665–1679.

11.

Wagner

Brath

A global view on the development of non communicable diseases. Prev Med 2012; 54 Suppl: S38–S41.

12.

Viviers

van Zyl-Smit

RN.

Chronic obstructive pulmonary disease – diagnosis and classification of severity. S Afr Med Assoc 2015; 105: 786–788.

13.

Magitta

Epidemiology and challenges of managing COPD in sub-Saharan Africa. Acta Sci Med Sci 2018; 2(1): 17–23.

14.

Disler

Gallagher

Davidson

PM.

Factors influencing self-management in chronic obstructive pulmonary disease: an integrative review. Int J Nurs Stud 2012; 49(2): 230–242.

15.

Allwood

Calligaro

Pathogenesis of chronic obstructive pulmonary disease: an African perspective. S Afr Med J 2015; 105(9): 789–792.

16.

Agustí

R. F. COPD beyond smoking: new paradigm, novel opportunities. Lancet Respir Med 2018; 6: 324–326.

17.

Salvi

Barnes

PJ.

Chronic obstructive pulmonary disease in non-smokers. Lancet 2009; 374: 733–743.

18.

Lamprecht

McBurnie

Vollmer

, et al. COPD in never smokers: results from the population-based burden of obstructive lung disease study. Chest 2011; 139: 752–763.

19.

Global strategy for the diagnosis, management and prevention of chronic obstructive pulmonary disease (2024 report). Global Initiative for Chronic Obstructive Lung Disease, Inc. 2024.

20.

Pearson

Ayres

Sarno

, et al. Diagnosis of airway obstruction in primary care in the UK: the CADRE (COPD and Asthma Diagnostic/management REassessment) programme 1997–2001. Int J Chron Obstruct Pulmon Dis 2006; 1(4): 435–443.

21.

Hill

Goldstein

Guyatt

, et al. Prevalence and underdiagnosis of chronic obstructive pulmonary disease among patients at risk in primary care. CMAJ 2010; 182(7): 673–678.

22.

Shahaj

Meiwald

Puri Sudhir

, et al. Mapping the common barriers to optimal COPD care in high and middle-income countries: qualitative perspectives from clinicians. Int J Chron Obstruct Pulmon Dis 2024; 19: 1207–1223.

23.

Desalu

Busari

Onyedum

, et al. Evaluation of current knowledge, awareness and practice of spirometry among hospital based Nigerian doctors. BMC Pulm Med 2009; 9(1): 50.

24.

Vanjare

Chhowala

Madas

, et al. Use of spirometry among chest physicians and primary care physicians in India. NPJ Prim Care Respir Med 2016; 26: 16036.

25.

Bateman

Feldman

Mash

, et al. Systems for the management of respiratory disease in primary care – an international series: South Africa. Prim Care Respir J 2009; 18(2): 69–75.

26.

Bailie

Matthews

Brands

, et al. A systems-based partnership learning model for strengthening primary healthcare. Implement Sci 2013; 8(1): 143.

27.

Chugh

Roth

Gillum

, et al. Global burden of atrial fibrillation in developed and developing nations. Glob Heart 2014; 9(1): 113–119.

28.

Zhao

Thomas

Guthridge

, et al. Better health outcomes at lower costs: the benefits of primary care utilisation for chronic disease management in remote Indigenous communities in Australia’s Northern Territory. BMC Health Serv Res 2014; 14(1): 463.

29.

Peeler

Afolabi

Adcock

, et al. Primary palliative care in low- and middle-income countries: a systematic review and thematic synthesis of the evidence for models and outcomes. Palliat Med 2024; 38(8): 776–789.

30.

Higginson

Bausewein

Reilly

, et al. An integrated palliative and respiratory care service for patients with advanced disease and refractory breathlessness: a randomised controlled trial. Lancet Respir Med 2014; 2(12): 979–987.

31.

Maddocks

Lovell

Booth

, et al. Palliative care and management of troublesome symptoms for people with chronic obstructive pulmonary disease. Lancet 2017; 390(10098): 988–1002.

32.

World Health Organization. Integrating palliative care and symptom relief into primary health care: a WHO guide for planners, implementers and managers. Geneva: World Health Organisation, 2018.

33.

Department of Health Republic of South Africa, 2017. https://www.health.gov.za/wp-content/uploads/2020/11/NationalPolicyFrameworkandStrategyonPalliativeCare20172022.pdf (accessed 20 July 2025).

34.

Seward

Hanlon

Abdella

, et al. HeAlth System StrEngThening in four sub-Saharan African countries (ASSET) to achieve high-quality, evidence-informed surgical, maternal and newborn, and primary care: protocol for pre-implementation phase studies. Glob Health Action 2022; 15(1): 1987044.

35.

Seward

Murdoch

Hanlon

, et al. Implementation science protocol for a participatory, theory-informed implementation research programme in the context of health system strengthening in sub-Saharan Africa (ASSET-ImplementER). BMJ Open 2021; 11(7): e048742.

36.

Tong

Sainsbury

Craig

Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care 2007; 19: 349–357.

37.

Harding

Informal caregivers in home palliative care. Prog Palliat Care 2013; 21(4): 3.

38.

Skivington

Matthews

Simpson

, et al. A new framework for developing and evaluating complex interventions: update of Medical Research Council guidance. BMJ 2021; 374: n2061.

39.

Malterud

Siersma

Guassora

AD.

Sample size in qualitative interview studies: guided by information power. Qual Health Res 2016; 26(13): 1753–1760.

40.

Braun

Clarke

What can “thematic analysis” offer health and wellbeing researchers?

Int J Qual Stud Health Well-being 2014; 9: 26152

41.

Hunter

Chandran

Asmall

, et al. The ideal clinic in South Africa: progress and challenges in implementation. S Afr Health Rev 2017; 2017(1): 111–123.

42.

Curtis

Engelberg

Nielsen

, et al. Patient-physician communication about end-of-life care for patients with severe COPD. Eur Respir J 2004; 24(2): 200–205.

43.

Kokturk

Abuharbid

Albanna

, et al. A cross-sectional study in patients with severe COPD to assess the perception of symptom variability (COPVAR) in the Middle East and Africa. Int J Chron Obstruct Pulmon Dis 2019; 14: 2959.

44.

Brighton

Miller

Farquhar

, et al. Holistic services for people with advanced disease and chronic breathlessness: a systematic review and meta-analysis. Thorax 2019; 74(3): 270–281.

45.

Duarte-de-Araujo

Teixeira

Hespanhol

, et al. COPD: understanding patients’ adherence to inhaled medications. Int J Chron Obstruct Pulmon Dis 2018; 13: 2767–2773.

46.

Aisanov

Bai

Bauerle

, et al. Primary care physician perceptions on the diagnosis and management of chronic obstructive pulmonary disease in diverse regions of the world. Int J Chron Obstruct Pulmon Dis 2012; 7: 271–282.

47.

Lundell

Wadell

Wiklund

, et al. Enhancing confidence and coping with stigma in an ambiguous interaction with primary care: a qualitative study of people with COPD. COPD 2020; 17(5): 533–542.

48.

Cross

Liang

, et al. Educational interventions for health professionals managing chronic obstructive pulmonary disease in primary care. Cochrane Database Syst Rev 2022; 2022(5): CD012652.

49.

Giusti

Nkhoma

Petrus

, et al. The empirical evidence underpinning the concept and practice of person-centred care for serious illness: a systematic review. BMJ Glob Health 2020; 5(12): e003330.

50.

Nkhoma

Cook

Giusti

, et al. A systematic review of impact of person-centred interventions for serious physical illness in terms of outcomes and costs. BMJ Open 2022; 12(7): e054386.

51.

Giusti

Pukrittayakamee

Alarja

, et al. Developing a global practice-based framework of person-centred care from primary data: a cross-national qualitative study with patients, caregivers and healthcare professionals. BMJ Glob Health 2022; 7(7): e008843.

52.

Stanford

Sandberg

Gwyther

, et al. Conversations worth having: the perceived relevance of advance care planning among teachers, hospice staff, and pastors in Knysna, South Africa. J Palliat Med 2013; 16(7): 762–767.

53.

Singh

Halpin

DMG

Salvi

, et al. Exercise and pulmonary rehabilitation for people with chronic lung disease in LMICs: challenges and opportunities. Lancet 2019; 7: 1002–1004.

54.

Harding

Salins

Sharan

, et al. Health literacy in communication, decision-making and outcomes among cancer patients, their families and clinicians in India: a multicentre cross-sectional qualitative study. Psychooncology 2022; 31(3): 532–540.

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