Findings from the closed-ended questions
Participants’ socio-demographic characteristics
The mean (+SD) age of the 394 participants was 51.89 (+14.67) years, and about 22.9% were within the age group 41–50 years. The majority of participants were females (77.7%) and were unmarried (60.6%). Most of the participants’ racial classification was black (81.5%), and 64.5% had primary education as their highest level of education. More than four-fifths, 82.7% were unemployed, 55.8% lived in urban areas, and 24.6% had cervical cancer, the most common type of cancer among the participants (Table: 1).
Table 1: Socio-demographic characteristics of participants (N=394)
Characteristics
|
Frequency
|
Percent
|
Age (years)
|
|
|
<30
|
26
|
6.7
|
30–40
|
72
|
18.7
|
41–50
|
88
|
22.9
|
51–60
|
79
|
20.5
|
61–70
|
68
|
17.7
|
>70
Mean age (+SD): 51.89 (+14.67)
|
51
|
13.2
|
Gender
|
|
|
Male
|
84
|
21.3
|
Female
|
306
|
77.7
|
Marital status
|
|
|
Unmarried
|
233
|
60.6
|
Living with partner*
|
160
|
41.6
|
Ethnic group
|
|
|
Black
|
313
|
81.5
|
White
|
19
|
4.9
|
Coloured
|
3
|
0.8
|
Indian
|
57
|
14.8
|
Level of education
|
|
|
Never been to school
|
88
|
22.3
|
Primary
|
254
|
64.5
|
Tertiary level
|
26
|
6.6
|
Employment status
|
|
|
Employed
|
67
|
17.0
|
Unemployed
|
326
|
82.7
|
Geographical area
|
|
|
Rural
|
173
|
43.9
|
Urban
|
220
|
55.8
|
Cancer diagnosis
|
|
|
Cervical cancer
|
97
|
24.6
|
Breast cancer
|
89
|
22.6
|
Other cancers
|
76
|
19.3
|
Kaposi’s sarcoma cancer
|
57
|
14.5
|
Prostate cancer
|
21
|
5.3
|
Colon cancer
|
18
|
4.6
|
Anal cancer
|
13
|
3.3
|
Vulva cancer
|
13
|
3.3
|
Lung cancer
|
10
|
2.5
|
*married people and those who are cohabitating.
Major barriers to palliative care utilisation
In addition, over a third (40%) of the participants reported lack of cancer knowledge and the pursuit of alternative treatment options, only a few reported stigma and discrimination (19%) and 4% reported long waiting periods for results of the accurate diagnosis or to be attended to by the doctor and for the date of the next appointment. In addition, participants reported lack of screening and diagnostic equipment (1%) and 25% cited socio-economic barriers, which include transport issues and employment status as factors contributing to the underutilisation of PC services in KZN (Fig: 1).
Table 2: Factors associated with participants’ perception of having enough information on palliative care
Characteristic
|
Not enough PC Info
|
Enough PC Info
|
Total
|
P-Value
|
Gender, n(%)
|
|
|
|
|
Male
|
50 (59.52)
|
34 (40.48)
|
84 (21.54)
|
0.176
|
Female
|
156 (50.98)
|
150 (49.02)
|
306 (78.46)
|
Setting, n(%)
|
|
|
|
|
Rural
|
105 (60.69)
|
68 (39.31)
|
173 (44.02)
|
0.008
|
Urban
|
103 (46.82)
|
117 (53.18)
|
220 (55.98)
|
Level of education, n(%)
|
|
|
|
Never been to school
|
20 (83.33)
|
4 (16.67)
|
24 (6.12)
|
0.003
|
Primary school
|
53 (60.23)
|
35 (39.77)
|
88 (22.45)
|
Secondary/High school
|
122 (48.03)
|
132 (51.97)
|
254 (64.80)
|
College/University
|
13 (50.00)
|
13 (50.00)
|
26 (6.63)
|
Race/Ethnicity, n(%)
|
|
|
|
|
Black/African
|
182 (58.15)
|
131 (41.85)
|
313 (80.67)
|
<0.001
|
White
|
10 (52.63)
|
9 (47.37)
|
19 (4.90)
|
Coloured
|
3 (100)
|
0 (0)
|
3 (0.77)
|
Indian
|
13 (24.53)
|
40 (75.47)
|
53 (13.66)
|
Language, n(%)
|
|
|
|
|
Zulu
|
169 (58.28)
|
121 (41.72)
|
290 (73.60)
|
0.002
|
English
|
30 (35.71)
|
54 (64.29)
|
84 (21.32)
|
Xhosa
|
5 (41.67)
|
7 (58.33)
|
12 (3.05)
|
Other
|
5 (62.5)
|
3 (37.5)
|
8 (2.03)
|
Perceived barriers to PC, n(%)
|
|
|
|
Lack of cancer knowledge
|
85 (54.49)
|
71 (45.51)
|
156 (44.83)
|
0.037
|
Stigma/discrimination
|
27 (36)
|
48 (64)
|
75 (21.55)
|
Long waiting periods
|
8 (57.14)
|
6 (42.86)
|
14 (4.02)
|
Lack of screening and diagnostic eq
|
1 (33.33)
|
2 (66.67)
|
3 (0.86)
|
Socio-economic bearriers
|
57 (57)
|
43 (43)
|
100 (28.74)
|
Who referred the patient, n(%)
|
Self/family member
|
9 (34.62)
|
17 (65.38)
|
26 (6.63)
|
0.002
|
Community caregiver
|
2 (50)
|
2 (50)
|
4 (1.02)
|
Primary clinic of GP
|
32 (45.07)
|
39 (54.93)
|
71 (18.11)
|
Secondary hospital
|
149 (60.57)
|
97 (39.43)
|
246 (62.76)
|
Tertiary hospital (private or public)
|
16 (35.56)
|
29 (64.44)
|
45 (11.48)
|
Having health coverage, including health insurance, n(%)
|
No
|
202 (54.16)
|
171 (45.84)
|
373 (95.15)
|
0.019
|
Yes
|
5 (26.32)
|
14 (73.68)
|
19 (4.85)
|
PC services accommodates different cancer diagnoses, n(%)
|
Do not know
|
63 (65.63)
|
33 (34.38)
|
96 (24.62)
|
<0.001
|
No
|
40 (93.02)
|
3 (6.98)
|
43 (11.03)
|
Yes
|
103 (41.04)
|
148 (58.96)
|
251 (64.36)
|
PC Staff attitudes, n(%)
|
|
|
|
Bad/negative
|
14 (87.5)
|
2 (12.5)
|
16 (4.18)
|
<0.001
|
Fair
|
80 (72.73)
|
30 (27.27)
|
110 (28.72)
|
Good
|
107 (41.63)
|
150 (58.37)
|
257 (67.10)
|
Quality of PC services offered*†
|
34070.00
|
41785.00
|
|
<0.001
|
Rating the utilisation of PC services among cancer patients*†
|
35217.50
|
39473.50
|
|
<0.001
|
Age in years*
|
40749.5
|
33170.5
|
|
0.0859
|
Furthermore, when participants were asked about what could be done to improve the uptake of PC services, a number of them (45%) cited that the Department of Health (DoH) should allocate enough resources for cancer awareness campaigns in the communities. About 27% recommended that the DoH should improve healthcare services, and only a few suggested an increased attention to quality in-service training, with continuous professional development (CPD) for healthcare providers raised by 8% of the participants. The analysis revealed that the majority of participants believed that when the above mentioned are prioritised, the number of premature deaths would decrease and that CPD on PC would enhance healthcare providers’ knowledge and practice (Fig: 2).
Findings from the open-ended questions
The five major themes on factors that affect cancer patient in utilising PC services were identified and are discussed below: (1) lack of cancer knowledge and pursuit of treatment options, (2) stigma and discrimination, (3) long waiting periods for referral, diagnosis, treatment and care, (4) lack of screening and diagnostic equipment and (5) socio-economic barriers. Furthermore, participants stated what could be done by the government’s health department to make PC services more appealing to patients. Under this theme, there were three major subthemes: (1) cancer awareness campaigns, (2) improved healthcare services and (3) CPD.
Factors Influencing Palliative Care Utilisation Amongst Patients
Cancer knowledge and pursuit of treatment options
Knowledge and awareness about cancer symptoms, treatment options available and palliative care services were poor among patients with cancer. The available information focused on communicable diseases. With that being said, cancer patients were unable to seek PC because of limited general knowledge about cancer symptoms. The excerpts below attest to this assertion (Participants: 21 & 26).
“In 2012, I started noticing that I had a small pimple on my left foot that would not go away. I always thought something must have bitten me while I was in the bush. It kept growing as small pimples with smelly pus over the years, and I never thought it was a medical condition as I had decided to consult with a traditional healer to see if I could get umuthi (traditional remedy) to make it go away because I had also started thinking that I had been bewitched…because that is the only cure for unusual symptoms of sickness, especially us, people from the rural areas who are far away from everything” (33 year old male participant living with Kaposi sarcoma cancer: 21).
Most of the participants also spoke about not knowing that cancer can be manageable, and if found at an early stage, some may be curable.
“Growing up in the village, we were not aware that cancer is manageable as we were only told that there is no cure for it and that when you have cancer, it’s a death sentence for you” (40 year old female participant living with Breast cancer: 26).
Stigma and Discrimination
The findings revealed a universal expectation that people with cancer would experience stigma and discrimination. Therefore, they delayed in reporting symptoms because of expectations, based on previous experience, that they would be stigmatised as having multiple partners and blamed for their illness (Participant: 53).
“I remember when I first got the news that I had Vulva cancer, people thought it must have been because I have been sleeping around with their men. Some of the family members would not come to visit me like they normally did. I don’t know whether it’s because of the smell or they just don’t want to associate themselves with someone who has cancer of the vagina as the rumour says, I have been sleeping around” (30 year old female participant living with Vulva cancer: 53).
Long waiting periods for referral, diagnosis, treatment and care
While early access to PC is seen as helpful to support advanced care planning, to help patients and their families and to promote better symptom management, long waiting periods remain an important barrier to cancer PC. Participants highlighted how long waiting hours to be attended to in a health facility, long waiting periods for the next appointment and long waiting periods for an accurate diagnosis had affected their confidence in the SA healthcare system (Participant: 62).
“The whole of SA is disgusting. Can you imagine having to beg the nurse to make a referral for you, because the pain is getting worse each day, and you cannot take it anymore? After being referred to a government hospital, you have to wait for hours to be attended to by a doctor when you get there.… I think they do not even start on time to do their consultations because we get there as early as possible, around 7:00 am. When you finally get a chance to be seen by a doctor, you sometimes do not get the accurate results for your presenting problem and have to go back home and wait again for other three to six months for the next appointment. It doesn’t make sense because the disease does not stop growing and spreading, especially this one to be precise” (55 year old female participant living with Cervical cancer: 62).
Lack of screening and diagnostic equipment
It has been said that early detection, both by screening and early clinical diagnosis, is a critical intervention to control cancer in LMICs. The main objective of cancer screening and early clinical diagnosis (through improved awareness and health services infrastructure and accessibility) is to detect cancer cases early enough to provide the least toxic and least expensive curative treatment. Most of the participants stated how they were affected by the lack of resources, such as screening machines and diagnostic equipment in KZN healthcare facilities (Participant: 82).
“One of the reasons why I’m now this sick is because I have been transferred from one hospital to another because some of these hospitals do not have enough cancer screening machines. I get checked and given Paracetamol for pain which barely makes a difference…what I’m trying to say is that if they had discovered at an early stage that I had Breast cancer I would not be in so much pain and I would not be running around for cancer management… There was also a time where I needed pain medication, but I was told that they were out of medication and I had to buy from my own pocket, which is also another issue” (42 year old female participant living with Breast cancer: 82).
Socio-economic barriers
Socio-economic barriers were also reported to play a role in the healthcare practices and experiences of KZN cancer patients. Limited monetary resources, fear of unemployment and lack of insurance coverage were viewed as contributing to delays in medical care-seeking (Participant: 77).
“To be absent from work because you have to go for cancer treatment is something else…because when you finally get back to work, you find that your employer has replaced you with someone else… meaning you will now have to start job hunting again, which takes a lot of effort and exposes you to another[kind of] stress you do not need, especially when you are sick with Cervical cancer” (45 year old female participant living with Cervical cancer:77).
Patients’ perspectives on what could be done to make cancer palliative care services appealing
Participants from the three hospitals and two hospices we visited highlighted that enhanced cancer awareness campaigns for the general population, improved healthcare services and CPD for healthcare providers would assist in strengthening knowledge and awareness about cancer symptoms and PC services available (Participants: 27, 40, 44, 49, 50 & 53).
Awareness campaigns
Most of the participants suggested that health literacy about NCDs, especially cancer, should be done within the hospitals while the patients are waiting to be attended.
There should also be information counters with flyers written in both IsiZulu and English. This would keep the patients updated, and they would know about their disease (Participants: 27 & 40).
“We need monthly awareness campaigns done by the CCGs, and they should deliver accurate information, by doing so everybody gets to understand their diagnosis and no one would feel ashamed about being diagnosed with NCDs if we talk about these openly…DoH should utilise CCGs because they are able to take the services to the communities” (50 year old male participant living with Prostate cancer: 27).
“CCGs should also be able to do community outreach for patients who are too ill and [thus] unable to travel” (26 year old female participant living with Kaposi sarcoma cancer: 40).
Improved healthcare services
Many participants pointed out that KZN hospitals lack properly trained palliative healthcare providers, and patients are nursed in large open wards with little privacy. Additionally, participants stated that access to screening and essential treatment services was poor. A combination of different approaches involving education, awareness, advocacy, legislation, vaccination, screening, early diagnosis and treatment should be used to prevent suffering and death due to cancer.
“The situation in the state hospitals is really terrible, we have to travel from one hospital to another because some don’t have cancer screening machines, some don’t have oncology specialists/ palliative care specialists, and some don’t even have enough medication in stock…what do you call that? DoH really needs to do something about this depressing situation in this region because so many people are dependent on public hospitals for their disease management and if this is also not improved how are we supposed to trust them?” (49 year old male participant living with Anal cancer: 44).
Continuous professional development (CPD)
Most participants agreed that education and training for healthcare providers must address issues about; i) how to communicate effectively with patients and their family members, ii) how to involve patients in decision making early in the course of their illness, and iii) how to ensure that the advanced care planning goals are met. An in-house education program for healthcare providers about available PC services and how healthcare providers can work with consultative teams to provide such services to patients with life-limiting illnesses may help to achieve such ends (Participants: 49, 50 & 53).
“Healthcare providers are always in a rush, they don’t have time to offer emotional support, and they don’t acknowledge patients’ concerns – if we can’t address our concerns to them, who should we direct them to?” (29 year old female participant living with Kaposi sarcoma cancer: 49).
“Healthcare providers need to be taught the spirit of ubuntu (humanity), they have no respect for a sick person…they do not listen to our concerns, their only focus is managing cancer pain and not acknowledging other concerns. When you leave the consultation room, you feel discouraged, not knowing where to turn to – but doctors and nurses are supposed to make you feel better under these circumstances” (37 year old female participant living with Vulva cancer: 50).
“When a nurse is unable to tell whether you need more check-ups or not, it becomes a problem because you get discouraged even to go further as nurses sometimes would say: it’s just a rash it will soon go away, and you really did not have to come all the way for this” (36 year old male participant living with Kaposi sarcoma cancer: 53).