Abstract
Context
In sub-Saharan Africa, late diagnosis with cancer is common. Many dying patients rely on family members for care; little is known about the challenges African informal caregivers face.
Objectives
To better understand the challenges of informal caregivers at the end-of-life in South Africa, both at home and in inpatient facilities.
Methods
We included advanced cancer patients and caregivers from a public hospital in Johannesburg, South Africa. Study nurses interviewed patients and caregivers about their experiences. Using univariate and multivariate analyses, we determined the factors associated with greater caregiver difficulty, focusing on patients dying at home versus in inpatient facilities.
Results
Among 174 patients, 62 caregivers (36%) reported “a lot” of challenges. These caregivers struggled most with keeping the patient clean (16%) and with patient interactions (34%). Symptoms associated with greater difficulty included pain (odds ratio (OR) 2.4, [95%CI 1.2, 4.7]), urinary incontinence (OR 2.3, [95%CI 1.1, 4.9]), fecal incontinence (OR 2.4, [95%CI 1.0, 5.7]), insomnia (OR 2.9, [95%CI 1.3, 6.9]), fatigue (OR 6.3, [95%CI 1.8, 21.6]), extremity weakness (OR 2.9, [95%CI 1.3, 6.9]), shame (OR 4.2, [95%CI 1.5, 12.0]) and sadness (OR 2.3, [95%CI 1.1, 4.8]). Caregivers of patients dying at home reported the greatest difficulty with patients’ physical symptoms; caregivers of those dying in facilities reported the greatest difficulty with emotional symptoms.
Conclusions
Informal caregivers of patients dying at home reported challenges with practical functional care; this effect was reduced in the inpatient setting. Skills training for these caregivers could relieve some of this burden.
Keywords: Palliative Medicine, Palliative Care, Caregivers, Global Health, Africa South of the Sahara, South Africa
Introduction
Although most of the world is seeing a decrease in cancer-related mortality, the age-standardized death rates from various malignancies are rising throughout sub-Saharan Africa (SSA).1 Due to poverty, poor public cancer awareness and suboptimal referral pathways, patients in SSA present with later stage disease than those in high-income countries (HICs).2–4 Often, they cannot benefit from curative-intent therapy.
Palliative services in SSA are increasing, but inpatient hospice units are limited.5 Most dying patients are cared for by informal home caregivers: untrained family members or friends.6 In the HIC setting, family caregivers of advanced cancer patients experience deterioration of physical, mental, social, and financial health.7–10 Little is known about caregivers’ experiences in low- and middle-income countries (LMICs). SSA caregivers have described difficulty with the practical aspects of caregiving and a lack of knowledge needed to provide effective care.6,11
The aim of this study was to improve understanding of the challenges faced by home caregivers of patients at the end-of-life (EoL) in South Africa and, specifically, which symptoms contributed most to the difficulties of caregiving. We hypothesized that the challenges of caring for patients dying at home would be different from those of caring for patients dying in inpatient facilities.
Methods
Setting
Chris Hani Baragwanath Academic Hospital (CHBAH) is a 2,900-bed tertiary level public hospital in Soweto, a suburb of Johannesburg, South Africa. CHBAH’s patients are predominantly black and very low income; many live in shacks without running water or electricity. CHBAH offers management of non-communicable diseases, including cancer.
The CHBAH Palliative Care Centre (PCC) is one of the few public palliative care programs in South Africa. A multidisciplinary team provides typical palliative care services: symptom management, spiritual and psychosocial support and, when appropriate, referral to the few inpatient hospice units in Johannesburg. Staff also conduct home visits to support patients and families.
Study Design & Participants
Since May 2016, the PCC has been conducting a study of EoL conditions of terminal cancer patients.
Patients were eligible for the study if they were: ≥18 years old; diagnosed with breast, gastrointestinal, or lung cancer, soft tissue sarcoma, or melanoma; unlikely to benefit from curative-intent therapy; not expected to survive beyond 6 months; referred to the CHBAH PCC for EoL support; and accompanied by a caregiver.
PCC clinicians identified eligible patients from those referred by inpatient or ambulatory units; study nurses approached potential participants. Trained palliative care nurses obtained informed consents and interviewed subjects regarding their clinical history, illness understanding, spiritual beliefs, and mental and physical symptom burden. At enrollment, patients identified their primary informal caregiver, and that caregiver was also consented for study.
We conducted a retrospective cohort study within the larger PCC study, including deceased patients enrolled before October 2017. Patients who survived longer than 1 year after enrollment were excluded.
Variables and Measurement Tools
Participants provided demographic information, including age, gender, self-identified race, relationship and employment status, educational background, caregiver gender and the caregiver relationship. We computed socioeconomic status (SES) using a technique modeled on the Demographics and Health Surveys Program’s wealth index.12 Home ownership, water access, toilet type, electricity access and possession of a range of household items were recorded for each patient. Principal component analysis was conducted and patients were sorted into quartiles using the first principal component. The elements with the highest first component eigenvectors were presence of a refrigerator (0.31), commercial electricity (0.29), an indoor toilet (0.29), and a microwave (0.28).
Clinical information included the primary malignancy, HIV status, other comorbidities and interviewer estimate of Eastern Cooperative Oncology Group (ECOG) performance status.13
At enrollment and each subsequent patient encounter, study nurses administered the African Palliative Care Association’s African Palliative Care Outcome Scale (APCA POS), a regionally validated instrument measuring physical and emotional symptoms on a 6-point scale.14 To estimate patient-reported EoL symptom burden, we separately summed the scores for the two physical symptom questions (score range: 0–12) and five emotional symptom questions (score range: 0–30) from the last recorded APCA POS.
Following each patient’s death, the caregiver was interviewed on the degree of difficulty with caring for the patient in the last week of life; specific challenges around medication access, keeping the patient clean, interactions with the patient, interactions with providers, family conflict and patient cooperation; and severity of the specific symptoms in the last week of life, including pain, dyspnea, bowel and bladder incontinence, nausea/vomiting, insomnia, constipation, diarrhea, fatigue, limb weakness, skin breakdown, edema, fevers, thirst and seizures.
All patient and caregiver interviews were conducted by study nurses using the participant’s native language. All clinical and survey data were stored in a REDCap database.15
Analysis
Participants were sorted based on caregiver response to the post-mortem question “To what extent was it a challenge to care for the patient?” Caregivers responding “a lot” were classified as having experienced high difficulty, and those responding “a little” or “none” as having experienced low difficulty. Caregivers also reported the burden of EoL symptoms as “a lot,” “a little” or “none.” Those occurring “a lot” were considered high severity symptoms
We computed odds ratios with 95% confidence intervals for the association of high caregiver difficulty with patient and caregiver demographics and clinical factors, last patient-reported physical and emotional symptom burden, specific EoL challenges and caregiver-reported EoL symptoms. We also conducted subgroup analyses of patients who died at home and patients who died in an inpatient facility. We developed a multivariable logistic regression model of factors associated with high caregiver difficulty using the stepwise fitting method and including all demographic, clinical and symptom factors with a univariate p-value <0.1 as candidate covariates. Analyses were conducted using SAS Studio, version 3.6.
Ethics
This study was approved by the Human Research Ethics Committee of the University of the Witwatersrand (M160118, 24/02/2016); all patient and caregiver participants supplied informed consent.
Results
Participants
As of October 2017, 304 eligible patients had been invited to participate in the larger PCC study at CHBAH. Of those, 12 were too incapacitated to consent and 5 caregivers declined to participate. Of 287 patients enrolled, 183 were known to be deceased; their caregivers completed a post-mortem survey. Nine deceased patients were excluded because they survived >1 year after enrollment; 174 patients were included in this analysis.
The mean patient age was 57.1 years (SD 13.5), and 94 (54%) were female. The majority self-identified as black or coloured (mixed race) (89.7% and 7.5%, respectively). Only 72 (41.4%) were married or partnered, and 25 (14.4%) were formally or informally employed. The most common cancers were lung (29.3%), breast (27.0%) and hepatobiliary (10.3%). Thirty-eight (21.8%) patients were HIV-positive, and 66 (38%) were hypertensive (Table 1). Median survival was 50 days (range: 1–363). Seventy-three (42.0%) patients died at home; the remainder died in the hospital (55.8%) or an inpatient hospice facility (3.3%).
Table 1.
Demographic and clinical characteristics of deceased cancer patients treated at the Chris Hani Baragwanath Academic Hospital Palliative Care Centre, May 2016-September 2017, by severity of home caregiver’s self-reported difficulty with caring for the patient at the end of life
| High Caregiver Difficulty* (n=62) |
Low Caregiver Difficulty* (n=112) |
All Caregivers (n=174) |
p-value | |
|---|---|---|---|---|
| Patients | Mean in Years (SD) | |||
| Age | 56.1 (12.6) | 57.6 (13.9) | 57.1 (13.5) | 0.47** |
| N (%)# |
||||
| Patient gender | ||||
| Female | 23 (37.1) | 71 (63.4) | 94 (54.0) | 0.001† |
| Male | 39 (62.9) | 41 (36.6) | 80 (46.0) | |
| Race (self-identified) | ||||
| Black | 56 (90.3) | 100 (89.3) | 156 (89.7) | 0.55† |
| Coloured | 5 (8.1) | 8 (7.1) | 13 (7.5) | |
| Indian | 0 (0.0) | 1 (0.9) | 1 (0.6) | |
| White | 1 (1.6) | 2 (1.8) | 3 (1.7) | |
| Other | 0 (0.0) | 1 (0.9) | 1 (0.6) | |
| Marital status | ||||
| Married/Partnered | 29 (46.8) | 43 (38.4) | 72 (41.4) | 0.34† |
| Single/Separated/Divorced/Widowed | 33 (53.2) | 69 (61.6) | 102 (58.6) | |
| Employment status | ||||
| Employed (formal or informal) | 9 (14.5) | 16 (14.3) | 25 (14.4) | 1.00† |
| Unemployed | 53 (85.5) | 96 (85.7) | 149 (85.6) | |
| Education (Highest level attained) | ||||
| No formal education | 2 (3.2) | 9 (8.0) | 11 (6.3) | 0.17† |
| Primary school | 11 (17.7) | 31 (27.7) | 42 (24.1) | |
| High school | 44 (71.0) | 58 (51.8) | 102 (58.6) | |
| Technical school | 3 (4.8) | 6 (5.4) | 9 (5.2) | |
| Graduate/Professional school | 2 (3.2) | 8 (7.1) | 10 (5.8) | |
| Socioeconomic Status | ||||
| >75th percentile | 15 (24.2) | 28 (25.0) | 43 (24.7) | 0.047† |
| 51–75th percentile | 9 (14.5) | 35 (31.3) | 44 (25.3) | |
| 26–50th percentile | 17 (27.4) | 27 (24.1) | 44 (25.3) | |
| ≤25th percentile | 21 (33.9) | 22 (19.6) | 43 (24.7) | |
| Malignancy | ||||
| Breast | 7 (11.3) | 40 (35.7) | 47 (27.0) | 0.03† |
| Lung | 21 (33.9) | 30 (26.8) | 51 (29.3) | |
| Colorectal | 8 (12.9) | 8 (7.1) | 16 (9.2) | |
| Hepatobiliary | 7 (11.3) | 11 (9.8) | 18 (10.3) | |
| Gastric / Gastroesophageal Junction | 6 (9.7) | 9 (8.0) | 15 (8.6) | |
| Pancreatic | 9 (14.5) | 7 (6.3) | 16 (9.2) | |
| Sarcoma | 2 (3.2) | 2 (1.8) | 4 (2.3) | |
| Esophageal | 1 (1.6) | 2 (1.8) | 3 (1.7) | |
| Anal | 1 (1.6) | 1 (0.9) | 2 (1.2) | |
| Other | 0 (0.0) | 2 (1.8) | 2 (1.2) | |
| Comorbidities | ||||
| HIV Infection | 10 (16.1) | 28 (25.0) | 38 (21.8) | 0.19† |
| Diabetes | 5 (8.1) | 11 (9.8) | 16 (9.2) | 0.79† |
| Hypertension | 25 (40.3) | 41 (36.6) | 66 (37.9) | 0.63† |
| Heart Disease/CVA | 2 (3.2) | 4 (3.6) | 6 (3.5) | 1.00† |
| Asthma/COPD | 3 (4.8) | 4 (3.6) | 7 (4.0) | 0.70† |
| Arthritis | 2 (3.2) | 5 (4.5) | 7 (4.0) | 1.00† |
| Baseline performance status (ECOG) | ||||
| 0–2 | 52 (83.9) | 78 (69.6) | 130 (74.7) | 0.046 |
| 3–4 | 10 (16.1) | 34 (30.4) | 44 (25.3) | |
| Caregiver’s | ||||
| N (%)# |
||||
| Gender | ||||
| Male | 6 (9.7) | 41 (36.6) | 47 (27.0) | <0.0001† |
| Female | 56 (90.32) | 71 (63.4) | 127 (73.0) | |
| Relationship to patient | ||||
| Spouse/Partner | 25 (41.0) | 34 (30.6) | 59 (34.3) | 0.09† |
| Child of patient | 13 (21.3) | 46 (41.4) | 59 (34.3) | |
| Sibling | 11 (17.7) | 12 (10.7) | 23 (13.4) | |
| Parent of patient | 7 (11.5) | 7 (6.3) | 14 (8.1) | |
| Extended family | 4 (6.7) | 9 (8.1) | 13 (7.6) | |
| Non-family | 1 (1.6) | 3 (2.7) | 4 (2.3) | |
| Unknown/Missing | 1 | 1 | 2 | |
The “High Difficulty” group corresponds to caregivers who responded “A lot” to question of extent to which “caring for the patient was challenging,” and the “Low Difficulty” group represents the caregivers who respond “A little” or “Not at all” to the same question.
P-value from pooled standard error test
Column percentages
P-value from Fisher’s exact test
One hundred twenty-seven caregivers (73.0%) were female. Fifty-nine (34.3%) were their patient’s partner; another 59 were their patient’s child (Table 1).
Challenges in caregiving
Describing the extent to which caring for the patient was challenging, 62 (35.6%) caregivers responded “a lot,” 38 (21.8%) responded “a little” and 74 (42.5%) responded “not at all.” Rating their ability to make the patient comfortable, 148 (85.1%) reported “a lot.” Regarding the extent to which they felt helpless while caring for the patients, 76 (43.7%) responded “a lot” (Table 2).
Table 2.
Home caregiver responses to post-mortem interview questions regarding the overall difficulty caring for their care receiver at the end of life for patients seen at the Palliative Care Center at the Chris Hani Bharagwanath Academic Hospital, May 2016-September 2017.
| All Caregivers (n=174) | |
|---|---|
| Question | N (%)* |
| Extent to which caretaker found caring for patient challenging | |
| A lot | 62 (35.6) |
| A little | 38 (21.8) |
| Not at all | 74 (42.5) |
| Extent to which caretaker felt able patient to make comfortable | |
| A lot | 148 (85.1) |
| A little | 19 (10.9) |
| Not at all | 7 (4.0) |
| Extent to which caretaker felt helpless while caring for the patient | |
| A lot | 76 (43.7) |
| A little | 36 (20.7) |
| Not at all | 62 (35.6) |
Column percentages
Caregivers of male patients, patients with a gastrointestinal or thoracic cancer, or a high performance status at enrollment were disproportionately represented among caregivers describing high difficulty (Table 1). Specific challenges associated with greater difficulty included “keeping the patient and environment clean” (OR 6.99, 95% CI 1.84, 26.5) and “interactions with the patient” (OR 2.36, 95% CI 1.15, 4.81) (Table 3).
Table 3.
Patient reported symptom burdens and caregiver reported specific challenges and symptoms at the end of life, by severity of home caregiver’s self-reported difficulty with caring for the patient at the end of life for patients seen at the Palliative Care Center at the Chris Hani Bharagwanath Academic Hospital, May 2016-September 2017.
| High Caregiver Difficulty* (n=62) |
Low Caregiver Difficulty* (n=112) |
All Caregivers (n=174) |
OR [95% CI] |
|
|---|---|---|---|---|
| Characteristics |
N (%)** |
|||
| Specific Challenges# | ||||
| Lack of access to palliative medications | 3 (4.8) | 1 (0.9) | 4 (2.3) | 5.64 [0.57, 55.46] |
| Keeping the patient and environment clean | 10(16.1) | 3 (2.7) | 13 (7.5) | 6.99 [1.84, 26.5]† |
| Interactions with the patient | 21 (33.9) | 20 (17.9) | 41 (23.6) | 2.36 [1.15, 4.81] † |
| Conflict with the family | 9 (14.5) | 9 (8.0) | 18 (10.3) | 1.94 [0.73, 5.19] |
| Interactions with healthcare providers | 6 (9.7) | 9 (8.0) | 15 (8.6) | 1.23 [0.42, 3.62] |
| Lack of patient cooperation | 3 (4.8) | 4(3.6) | 7 (4.0) | 1.37 [0.30, 6.34] |
| Physical symptom burden†† | ||||
| >75th percentile | 22 (35.5) | 34 (30.4) | 56 (32.2) | 1 [Ref] |
| 51–75th percentile | 8 (12.9) | 25 (22.3) | 33 (19.0) | 0.49 [0.19, 1.29] |
| 26–50th percentile | 18 (29.0) | 28 (25.0) | 46 (26.4) | 0.99 [0.45, 2.21] |
| ≤25th percentile | 14 (22.6) | 25 (22.3) | 39 (22.4) | 0.87 [0.37, 2.02] |
| Emotional symptom burden†† | ||||
| >75th percentile | 15 (24.2) | 27 (24.1) | 42 (24.1) | 1 [Ref] |
| 51–75th percentile | 19(30.7) | 24 (21.4) | 43 (24.7) | 1.43 [0.60, 3.41] |
| 26–50th percentile | 13 (21.0) | 37 (33.0) | 50 (28.7) | 0.63 [0.26, 1.54] |
| ≤25th percentile | 15 (24.2) | 24 (21.4) | 39 (22.4) | 1.13 [0.46, 2.77] |
| End of Life Symptoms§ | ||||
| Pain | 26 (41.9) | 26 (23.2) | 52 (29.9) | 2.39 [1.22, 4.66]† |
| Shortness of breath | 20 (32.3) | 37 (33.0) | 57 (32.8) | 0.97 [0.50, 1.87] |
| Urinary incontinence | 17 (27.4) | 16 (14.3) | 33 (19.0) | 2.27 [1.05, 4.89] † |
| Fecal incontinence | 14 (22.6) | 12 (10.7) | 26 (14.9) | 2.43 [1.04, 5.65] † |
| Nausea/vomiting | 8(12.9) | 9 (8.0) | 17 (9.8) | 1.70 [0.62, 4.64] |
| Insomnia | 15 (24.2) | 11 (9.8) | 26 (14.9) | 2.93 [1.25, 6.87]† |
| Constipation | 4 (6.5) | 4(3.6) | 8 (4.6) | 1.86 [0.45, 7.72] |
| Diarrhea | 7 (11.3) | 11 (9.8) | 18 (10.3) | 1.17 [0.43, 3.19] |
| Fatigue | 59 (95.2) | 85 (75.9) | 144 (82.8) | 6.25 [1.81, 21.55]† |
| Lower ext. weakness | 54 (87.1) | 69.6 | 132 (75.9) | 2.94 [1.26, 6.85]† |
| Upper & lower ext. weakness | 51 (82.3) | 74 (66.1) | 125 (71.8) | 2.38 [1.11, 5.09]† |
| Bedsores | 4 (6.5) | 5 (4.5) | 9 (5.2) | 1.48 [0.38, 5.71] |
| Edema | 19 (30.7) | 36 (32.1) | 55 (31.6) | 0.93 [0.48, 1.82] |
| Fever | 4 (6.5) | 3 (2.7) | 7 (4.0) | 2.51 [0.54, 11.58] |
| Thirst | 3 (4.8) | 2 (1.8) | 5 (2.9) | 2.80 [0.45, 17.21] |
| Seizures | 1 (1.6) | 0 (0.0) | 1 (0.6) | n/a |
| Lack of “peace” | 7 (11.3) | 13 (11.6) | 20 (11.5) | 0.97 [0.37, 2.57] |
| Shame | 12 (19.4) | 6 (5.4) | 18 (10.3) | 4.24 [1.50, 11.95]† |
| Feeling of being a burden | 15 (24.2) | 25 (22.3) | 40 (23.0) | 1.11 [0.53, 2.31] |
| Lack of acceptance | 7 (11.3) | 22 (19.6) | 29 (16.7) | 0.52 [0.21, 1.30] |
| Sadness | 20 (32.3) | 19 (17.0) | 39 (22.4) | 2.33 [1.13, 4.82]† |
| Fear of death | 7 (11.3) | 12 (10.7) | 19 (10.9) | 1.06 [0.39, 2.85] |
The “High Difficulty” group corresponds to caregivers who responded “A lot” to question of extent to which “caring for the patient was challenging,” and the “Low Difficulty” group represents the caregivers who respond “A little” or “Not at all” to the same question.
Column percentages
Caregivers were asked if they had experienced these specific challenges during the post-mortem interviews.
Fisher’s exact test p-value <0.05
Total symptom burden as reported by patients on their last recorded African Palliative Care Association’s African Palliative Care Outcome Scale
Instances in which caregivers reported that the patient experienced “A lot” of each symptom at the end of life on the post-mortem interview
The overall burden of physical and emotional symptoms reported by patients on their last APCA POS prior to death showed no association with extent of caregiver difficulty. However, caregivers reported greater difficulty associated with specific EoL symptoms, including pain (OR 2.39, 95% CI 1.22, 4.66), urinary incontinence (OR 2.27, 95% CI 1.05, 4.89), fecal incontinence (OR 2.43, 95% CI 1.04, 5.65), insomnia (OR 2.93, 95% CI 1.25, 6.87), fatigue (OR 6.25, 95% CI 1.81, 21.55), lower extremity weakness (OR 2.94, 95% CI 1.26, 6.85), upper and lower extremity weakness (OR 2.38, 95% CI 1.11, 5.09), shame (OR 4.24, 95% CI 1.50, 11.95) and sadness (OR 2.33, 95% CI 1.13, 4.82).
Fewer patients died at home within 7 days of discharge than died as inpatients within 7 days of admission (24.7% versus 46.5%, p<0.0001). Caregivers of patients who died at home, reported greater difficultywith “interacting with the patient” (OR 4.21, 95% CI 1.34, 13.23), pain (OR 3.0, 95% CI 1.09, 8.43), insomnia (OR 5.86, 95% CI 1.09, 31.49), fatigue (OR 9.8, 95% CI 1.2, 80.37) and upper and lower extremity weakness (OR 7.17, 95% CI 1.50, 34.21). Caregivers of patients dying in a facility reported greater difficulty with shame (OR 4.57, 95% CI 1.07, 19.59) and sadness (OR 3.15, 95% CI 1.22, 8.12) but not with physical symptoms, except for fatigue (OR 4.6, 95% CI 0.99, 21.52). Sensitivity analysis of only those patients who survived more than 7 days after discharge to home or admission to the hospital showed a similar pattern of greater physical symptom burden if dying at home and greater emotional symptom burden if dying as an inpatient (data not shown).
In a multivariable model for the entire cohort, the factors associated with high caregiver difficulty were female caregiver gender (OR 7.39, 95% CI 2.38, 22.90), difficulty “interacting with the patient” (OR 4.28, 95% CI 1.70, 10.84), insomnia (OR 3.8, 95% CI 1.35, 10.79), fatigue (OR 6.69, 95% CI 1.55, 28.79), and shame (OR 13.0, 95% CI 3.21, 52.90). Breast cancer was associated with less caregiver difficulty (OR 0.25, 95% CI 0.09, 0.69).
Discussion
This study evaluated factors associated with difficulty reported by caregivers in caring for EoL cancer patients at CHBAH. Three-quarters of caregivers were women, a larger proportion than has been reported in the United States (65% in the American Cancer Society’s Quality of Life Survey for Caregivers) or Europe (59% in the European Union National Health and Wellness Survey).16,17 Caring for a parent was also more common in this South African cohort than in the US survey (34% versus 4%).16
Thirty-six percent of our caregivers reported “a lot” of challenges at the end of life. The clinical factors associated with reporting greater challenges give clues as to the specific difficulties. Caregivers had minimal issues accessing palliative medications or interacting with healthcare providers. Their high difficulty was associated with keeping the patient and environment clean and with “interactions with the patient.” Our interviewers interpreted this phrase as describing the routine support of a patient’s physical needs (e.g., cleaning, toileting, feeding). The physical symptoms associated with more caregiver difficulty (pain, urinary and fecal incontinence, insomnia, fatigue, and extremity weakness) characterize debilitated patients needing the most physical support. The subgroup of caregivers whose patients died at home, reported greater difficulty with the same physical symptoms: pain, fatigue, and lower extremity weakness.
In other populations, a many caregivers have described their own intense fatigue and exhaustion.7,18,19 A third of Australian caregivers reported back and neck injuries.19 Caregivers of patients with urinary and fecal incontinence describe severe physical strain, presumably related to frequently cleaning the patient.18 Poor caregiver sleep is common when patients have abnormal sleep patterns.7,18
With limited access to supportive services, caregivers in other SSA countries describe the strain of providing basic nursing. An inverse relationship between patient functional status and caregiver burden has been reported in Nigeria.20 Caregivers in Uganda and South Africa have described daily feeding, dressing and cleaning of patients as a primary stressor.11 The patients these caregivers found most challenging were typically severely fatigued with limited ability to participate in their care.
Difficulty managing EoL pain is another challenge frequently cited in HICs, especially among caregivers who have felt unprepared to be the principal provider of pain control.21 A World Health Organization study in Botswana, Ethiopia, Tanzania, Uganda, and Zimbabwe also found inadequate pain relief to be prevalent at the EoL.6 Severe pain also was associated with caregiver difficulty in our cohort, suggesting that caregivers felt unable to provide full relief despite medication access.
Interestingly, caregivers of patients with severe EoL shame or sadness also reported greater difficulty, even if the loved one died in an inpatient facility. In the United States, death in the hospital or intensive care unit is associated with increased risk of caregiver post-traumatic stress disorder and prolonged grief disorder.22 Psychological and emotional stress are also prevalent in SSA caregivers and are a major source of burden in Nigeria, South Africa, and Uganda.11,20
Limitations
The focus of the parent palliative care study from which we drew our cohort was not caregivers but cancer patients at the EoL. Therefore, we lacked detailed data on caregiver demographics (e.g. age, educational level, comorbidities) that might have altered or enriched our findings.
In addition, the EoL symptoms associated with increased caregiver difficulty were those reported by the caregivers themselves. The use of post-mortem caregiver interviews to assess symptom burden limits independence from the studied outcome, the extent of caregiving challenges. However, caregivers’ reports of patient experience at the EoL have been used reliably in past research on patients with advanced cancer.23
Because our study focused on patients referred for palliative care services at EoL, it may have been biased towards patients with severe symptoms. However, the caregivers of such patients may be the most in need of intervention. Thus, a deeper understanding of this group remains useful.
Further Research
Caregivers of cancer patients at EoL face severe challenges to their physical, mental, social, and financial health.7 The resource limitations in LMICs may modify or exacerbate the patterns seen in wealthier regions. Studies of the full burden associated with caring for patients with advanced malignancies are needed in SSA.
Our findings also suggest opportunities for interventions designed to improve caregiver and patient experiences at the end of life. Programs to support caregivers in the United States and Europe include group and individual education in general physical care and symptom management. Some skills training interventions have been found to improve caregiver self-efficacy and physical function and to reduce caregiver distress and anxiety.24 Training to strengthen the skills needed to manage patients’ pain effectively and reduce daily physical demands may lighten the burden of caring for a loved one at the end of life and may also allow more terminally ill patients to die comfortably at home.
Informal caregivers of South African cancer patients face significant challenges in managing their loved one’s physical and emotional symptoms at the EoL. Caregivers of patients dying at home seem to have the greatest difficulty with physical symptoms and functional patient care. Caregivers of patients dying in a hospital or hospice are less burdened by physical care but are still challenged by emotional symptoms. Specific skills training may be valuable to lighten the burden of symptom management for informal home caregivers.
Table 4.
Caregiver reported specific challenges and symptoms at the end of life associated with increased caregiver difficulty, by location of patient death, for patients seen at the Palliative Care Center at the Chris Hani Bharagwanath Academic Hospital, May 2016-September 2017.
| Death at Home | Death in an Inpatient Facility | |||||||
|---|---|---|---|---|---|---|---|---|
| High Caregiver Difficulty* (n=28) |
Low Caregiver Difficulty* (n=45) |
All Caregivers (n=73) |
OR [95% CI] |
High Caregiver Difficulty* (n=34) |
Low Caregiver Difficulty* (n=67) |
All Caregivers (n=101) |
OR [95% CI] |
|
| Factors |
N (%)** |
N (%)** |
||||||
| Specific Challenges# | ||||||||
| Keeping the patient and environment clean | 4 (14.3) | 2 (4.4) | 6 (8.2) | 3.6 [0.62, 21.0] | 6 (17.7) | 1 (1.5) | 7 (6.9) | 14.1 [1.6, 123.0] † |
| Interactions with the patient | 11 (39.3) | 6 (13.3) | 17 (23.3) | 4.2 [1.3, 13.2]† | 10 (29.4) | 14 (20.9) | 24 (23.8) | 1.6 [0.6, 4.1] |
| End of Life Symptom§ | ||||||||
| Pain | 13 (46.4) | 10 (22.2) | 23 (31.5) | 3.0 [1.1, 8.4] † | 13 (38.2) | 16 (23.9) | 29 (28.7) | 2.0 [0.8, 4.8] |
| Urinary incontinence | 9 (32.1) | 7 (15.6) | 16 (21.9) | 2.6 [0.8, 8.0] | 8 (25.5) | 9(13.4) | 17 (16.8) | 2.0 [0.7, 5.7] |
| Fecal incontinence | 7 (25.0) | 5 (11.1) | 12 (16.4) | 2.7 [0.8, 9.4] | 7 (20.6) | 7 (10.5) | 14(13.9) | 2.2 [0.7, 7.0] |
| Insomnia | 6 (21.4) | 2 (4.4) | 8 (11.0) | 5.9 [1.1, 31.5] † | 9 (26.5) | 9(13.4) | 18 (17.8) | 2.3 [0.8, 6.5] |
| Fatigue | 27 (96.4) | 33 (73.3) | 60 (82.2) | 9.8 [1.2, 80.4]† | 32 (94.1) | 52 (77.6) | 84 (83.2) | 4.6 [0.99, 21.5] † |
| Lower ext. weakness | 25 (89.3) | 2 (68.9) | 56 (76.7) | 3.8 [0.97, 14.6] | 29 (85.3) | 47 (70.2) | 76 (75.3) | 2.5 [0.84, 7.3] |
| Upper & lower ext. weakness | 26 (92.9) | 29 (64.4) | 55 (75.3) | 7.2 [1.5, 34.2] † | 25 (73.5) | 45 (67.2) | 70 (69.3) | 1.4 [0.5, 3.4] |
| Shame | 6 (21.4) | 3 (6.7) | 9 (12.3) | 3.8 [0.9, 16.8] | 6 (17.7) | 2(4.5) | 9 (8.9) | 4.6 [1.1, 19.6] |
| Sadness | 7 (25.0) | 8 (17.8) | 15 (20.6) | 1.5 [0.5, 4.9] | 13 (38.2) | 11 (16.4) | 24 (23.8) | 3.2 [1.2, 8.1]† |
The “High Difficulty” group corresponds to caregivers who responded “A lot” to question of extent to which “caring for the patient was challenging,” and the “Low Difficulty” group represents the caregivers who respond “A little” or “Not at all” to the same question.
Column percentages
Caregivers were asked if they had experienced these specific challenges during the post-mortem interviews.
Fisher’s exact test p-value <0.05
Instances in which caregivers reported that the patient experienced “A lot” of each symptom at the end of life on the post-mortem interview
Acknowledgments
Funding: This study was funded by a T32 postdoctoral fellowship to Dr. O’Neil (T32 CA094061), and research grants from the National Cancer Institute to Dr. Prigerson (R35 CA197730), to Drs. Joffe, Ruff, Neugut and Jacobson (R01 CA192627) and by a CCSG supplemental award to Dr. Neugut (P30 CA13696).
Footnotes
Disclosures:
O’Neil: None
Prigerson: None
Mmoledi: None
Sobekwa: None
Ratshikana: None
Tsitsi: None
Cubasch: None
Wong: None
Jones: None
Sackstein: None
Blinderman: Advising - INSYS
Jacobson: None
Joffe: None
Ruff: Honoraria - Sanofi, Amgen, Roche; Research Funding - Amgen, Sanofi, Merck, Novartis, MSD
Neugut: Stock - Stemline Theraputics; Consulting - Pfizer, Teva, Otsuka, UBC, Hospira, EHE International
Blanchard: None
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