Table 2 Summary of study design, aims and objectives, participants, themes and findings
Author, Year, Country | Aims | Design | Participants | Themes | Findings |
|---|---|---|---|---|---|
Kabebew et al. [29], 2022, Ethiopia | To evaluate the satisfaction of family caregivers of patients with advanced cancer of the cervix in a tertiary hospital | Prospective cross-sectional | 385 patients with stage IIB –IVB cervical cancer and 360 primary caregivers | Limited support from intimate partners Financial constraints Advanced disease Availability of care Poor communication and physical symptom care Long interval to onset of treatment Positive attitude of healthcare providers | Spouses constituted 13.6% 0f caregivers Most caregivers (66.7%) work for upkeep Most patients (75%) have stage III and IV cancers High satisfaction with psychosocial care and availability of care Lower satisfaction with information provision and physical care Least satisfaction with time taken to reach diagnosis Most caregivers satisfied with availability of nurses to the care givers and doctors to the patients |
Bates et al. [4], 2021, Malawi | Investigate whether total household cancer-related health care costs over 6 months after a diagnosis of advanced cancer are associated with a patient receiving palliative care, and the experience of catastrophic costs in the household | Prospective cross-sectional study | 150 households with 150 patients with advanced cancer, and 121 family caregivers. At 6 months 89 households with 89 patients and 64 caregivers were evaluable, out of which 60 patients (67%) had cervical cancer | Socially active people with responsibility People live in rural areas Limited facilities for cancer care countrywide Access available but limited Limited support. Patients depend on own resources for some needs People in urban areas within 50 km radius more likely to access services Majority of households living in extreme poverty Most patients/households experienced financial hardship More non-PC recipient households used a larger proportion of annual income on healthcare Fewer households receiving PC experienced catastrophic costs Some households chose to forgo treatment rather than have catastrophic costs More rural households associated with catastrophic costs Non-PC recipient households associated with dissaving | Median patient age was 50 years (IQR 40–57); 47 (73%) of caregivers were female 48 households were rural Cancer care and PC facilities only available in the 4 tertiary hospitals Free treatment offered supported by Government and charitable groups Limited additional needs supported by charities 9 households received PC while 70 did not 89 households lived in extreme poverty (≤ $1.89 per day) Median annual household income before illness: • Overall - $204 (IQR 84–660) • PC recipients - $537 (07-821) • Non-PC recipients- $179(82–537) Household healthcare costs after 6 months: • PC patients - $50 (11–101) Direct costs $6 (4–26) Indirect costs $36 (5–56) • Non-PC patients - $55 (28–91) Direct costs $12 (0–21) Indirect costs $33 (13–56) Total healthcare cost as a proportion of total income • PC patients − 0.086 (0.037–0.579) • Non PC-patients − 0.278 (0.085–0.692), p = 0.126 Households experiencing catastrophic costs • PC – 9 of 19 (47%) Non-PC − 48 of 70 (69%), p = 0.109 • Rural – 37 of 48 (77%) Urban – 20 of 41 (49%), p = 0.008 Median dissaving at 6 months per household • PC - $11 (0–36) Non-PC - $34 (14–75), p = 0.005 |
Tapera et al. [25], 2021 Zimbabwe | To investigate some key and contextual strategies which could be implemented to improve access and uptake of cervical cancer treatment and palliative care by women | Qualitative inquiry as part of a sequential explanatory mixed method study | 84 purposively enrolled participants: 16 in-depth interviews with cervical cancer patients/caregivers and 20 key informants (health workers, policy makers and spiritual leaders 6 focus group discussions of cervical cancer patients, caregivers and male partners | Poor affordability Out-of-pocket expenditure on healthcare costs Poor access to definitive care Treatment unavailable to people in rural areas High costs of transport Accommodation costs Loss of income for patients and family members Limited knowledge and awareness by healthcare workers (HCW) Alternative care due to financial hardship Limited information on disease Limited resources Equipment unavailable Skills deficiency; no team approach to patient care Treatment guidelines and guidance unavailable Unmet needs | Treatment associated with high cost which most patients could not afford Most patients relied on out of pocket funding for their treatment Most patients could not afford cost of histopathology tests to confirm cancer before treatment decision is made Servicers are centralized in major cities out of reach of most rural people Cost of transport to reach centralized services unaffordable Cost of accommodation while attending services in cities especially for out of town rural people Patients and accompanying family members unable to earn income Healthcare professionals not well informed about cervical cancer Seeking alternative medicine (traditional and spiritual healers) as people cannot afford conventional treatment for cervical cancer Patients and families are not given adequate information about their illness and treatment available to them Few cancer treatment and palliative care centres Frequent equipment breakdown at the few facilities Different disciplines required for PC such as social workers and psychologists are lacking Guidelines for patient referral and treatment to ensure uniformity of care not available Patient and family emotional, spiritual, information and communication needs not met due to deficiency of soft skills among HCW |
Tapera et al. [18], 2020 Zimbabwe | To investigate palliative care knowledge and access among women with cervical cancer in Harare, Zimbabwe | A sequential explanatory mixed method study with descriptive cross-sectional surveys as a major study and qualitative inquiry as a minor study | 134 women with cervical cancer 78 HCW involved in cervical cancer screening, treatment and palliative care 16 in-depth interviews 48 participants in 6 FGD 20 key informant interviews | Socially active people with responsibilities Advanced stage cancer Moderate level of education Unemployment rate is high No intimate partners Low palliative care Availability of PC skills among HCW Adequate training and guidance Poor PC referral Availability of medicine Limited PC knowledge among patients and HCW Limited access to PC Patient misconception about PC Misconception and/or limited knowledge of cervical cancer Misconception of PC Low affordability of medicines Poor implementation of PC policy | Mean age of patients 52 years SD ± 12 Cancers stage FIGO ≥ 2b2 94% Secondary education − 61% No income - 51%; Unemployed - 67% Widowed, divorced or separated 60% Received palliative care − 13% Mean age of HCW 37 years SD ± 12 Trained to provide PC – 72% HCW accessing PC guidelines – 76%; HCW referring patient to PC specialty unit – 1.2% Stock-outs of pain medicine – 22% Knowledge of palliative care among HCW and patients are limited Few patients access palliative care even among women who received other forms of treatment Patient perceives cervical cancer as a death sentence Cervical cancer diagnosis and palliative care is stigmatized and linked to near death Palliative care only provided by hospice High cost of medicines for cancer patients Palliative care policy framework available but not fully implemented |
Kebede et al. [33], 2020- Ethiopia | To explore communication in cancer care in Ethiopia from the perspective of physicians, patients, and family caregivers | Ethnographic exploratory qualitative study using semi-structured interviews, and triangulating findings with direct observations and video-recordings of authentic interactions between physicians, patients, and family caregivers during hospital rounds | Purposively sampled participants 54 cancer patients • 20 males 34 females • Age 22–53 years • Cervical cancer number not mentioned 22 family caregivers • 11 male 11 female 16 physicians • 3 senior 13 junior • 11 males 5 females • Ages 29–58 years | Workload and time pressure Insufficient consultation time Insufficient information on disease Good HCW attitude Lack of privacy Language barrier No confidentiality No confidentiality Reluctance to reveal sensitive information Compromised autonomy Limited knowledge of cancer Long distances Influence from others Misconceptions about disease Culture/attitude Expectations Fear of stigmatization and isolation, | Large number of patients; few physicians Difficulty in allocating sufficient time for patient and family caregiver consultation Patient and family caregiver but not provided with enough information Care recipients described communication with physician positively; nice and humble doctors Consultation done in small non-sound-proof cubicles; frequent interruptions by other patients and staff Physicians and patients/family caregivers speaking different languages; Use of interpreters Family caregivers tended to dominate interaction with physicians including discussion on diagnosis and prognosis Male family member often responsible for making decisions and taking responsibility for patient care and expenses Patient has problems understanding the disease and treatment process Patient comes from distant rural areas Some patients told that traditional medicine is better; seeks professional help late after going through religious treatment with holy water Some care-recipients believe cancer is a curse from God; while others believe it can be transmitted from one person to another Stigma and taboo related to genitals in some communities; some female patient found it difficult to discuss cervical cancer openly and withheld vital information Hope to receive help from the doctor Patients reluctant to share diagnosis with others, including family |
Tapera et al. [26], 2019 Zimbabwe | To investigate the determinants of access to cervical cancer treatment and palliative care services in Harare, Zimbabwe | Sequential explanatory mixed method | Phase 1 –quantitative survey: 148 healthy women 134 cervical cancer patients or survivors 78 health workers involved in cervical cancer Phase 2- 6 FGD with 8 members per group 16 in-depth interviews 20 key informant interviews | User’s location User’s attitude User’s resources User’s attitude or resources Self- efficacy/attitude Satisfaction with quality of care/Expectations Transportation / user’s resources /service location Demand for service / user’s resources / service location /user’s location Financial hardships Willingness to pay Cost and prices of service Over servicing/ characteristics of health services Financial hardship Misconceptions about disease and treatment Social factors / user’s attitude Acceptability | Compared to those who did not receive any care, most patients receiving treatment: • Lived in urban high density population areas, (p = 0.025) • Were of protestant faith, (p = 0.028), • With household heads being a professional (p = 0.038). Most patients receiving no treatment had household heads with no formal education (p = 0.038) Locus of control was positively associated with uptake of treatment Perception of competency of HCW positively associated with treatment uptake Walking as a means of reaching nearest health facility was negatively associated with perceptions of access Mostly lack of transport or high transport cost for rural people who travel long distances to reach few cancer centres Accommodation often required for patient and family at these centre paid for by family Patient buys own drugs High cost of diagnostic tests, medications and other treatment unaffordable to most Same test ordered multiple times at every level of care Loss of employment for patient and accompanying family member Cervical cancer seen as death sentence and radiotherapy introduces foreign material into the body. Influence of traditional and some religious healers, family, attitudes play a major role in seeking treatment Prolonged waiting period |
Miranda et al. [27], 2016 Brazil | To analyse the clinical and socio- demographic profile of cancer patients seen in a specialized emergency service, considering the availability of palliative care and home care | Descriptive, cross-sectional study of medical records with an analytical component | 191 medical reviews including those of 35 patients with cervical cancer | Characteristics of health services | Brazil has hierarchical and regionalized network that prevents 1 in 5 patients to be displaced from rural areas in the state for case review in a referral hospital |
Maree & Langley, [7], 2014 South Africa | To elicit the experiences of underprivileged women being confronted with cervical cancer | Qualitative exploratory and contextual with descriptive and interpretive elements | 19 purposively selected newly diagnosed cervical cancer patients being prepared to receive radiotherapy | Vulnerable population Anxiety and/or depression Misconceptions about cervical cancer Waiting for treatment / Characteristics of health services Dissatisfaction with health system Medical assistance available Financial hardship Out of pocket costs /Family support Unemployed / user’s resources HCW attitude Disclosing bad news Family support Cost of being away from work Alternative forms of treatment / attitudes Limited knowledge of disease Communication Limited knowledge of HCW Majority of patients has advanced stage cancer | Mean age 47.2 years (29–70) Majority (16/19) were black South Africans. Most patients experience worrying symptoms such as excessive vaginal bleeding, offensive discharge, and pain Some patients experienced bleeding but did not have pain so they never though they had serious illness It took an average of 17 months from first symptoms to the start of specific treatment Patients felt the public health system failed them in terms of prompt diagnosis and start of treatment Patients do not pay for treatment in the public health system Private health system available and faster but patient could not afford the cost of treatment here unless paid for by relatives Most patients were unemployed The doctors were nice to the patients but had difficulty communicating bad news Some patients preferred to be alone when bad news was broken Found it difficult to disclose their diagnosis to the family to protect them from distress Patients who received their diagnosis in presence of family felt better after being consoled Accompanying family stayed away from work for consultations Seeking conventional medicine was delayed as some patients were advised by relatives to attend spiritual and traditional healing One patient did not know that cervical cancer is life threatening Most patients wanted to know more about the disease and treatment but the doctors could not explain to them Cancer stage 1b – 2a : 3 patients Cancer stage 2b to 4 : 15 |
Dutta et al. [28], 2013 India | To find out the socio-demographic causes which lead to non-compliance to treatment even after registration for radiotherapy | Retrospective analysis of medical records | 144 patients with cancer of the cervix already registered to receive treatment They received initial treatment at a nearby centre but had to go for the second phase of treatment at a centre 567 km away. Transport vouchers were provided but patients had to find and fund their own accommodation | Family burden Dependency / resources Older age Low literacy level Transport difficulties and high cost Burden of family responsibility Social status | Majority of patients were postmenopausal (56.94%), and had family burden of > 3 children Only 6.25% were self-employed The rest depended on family and husband for their livelihood Elderly patients > 50 were most unlikely to complete their course of treatment High number of illiterate women were unlikely to complete their treatment Most patient living more than 100 km from the nearest treatment facility unlikely to complete their course of treatment Women with more children preferred to take care of their families rather than be away from home for prolonged period of time Women who completed their treatment in time were wealthier; middle-aged; with < 3 children |
Mwaka et al. [31], 2013 Uganda | To explore the perceptions of operational level healthcare professionals who work directly with cervical cancer patients on challenges faced by women seeking cervical screening, cervical cancer diagnosis and management, and challenges faced by health professionals in providing cervical cancer care | Qualitative inquiry using key informant interviews | 10 female nurse/midwives, 2 gynaecologists, 2 medical officers and 1 surgeon working in a public regional and a mission hospital in northern Uganda | Patients and community related factors Healthcare professionals deficiencies Health facility related factors Facilities Health policy factors | Lack of awareness on cervical cancer and available services Discomfort with exposure of women’s genitals Perceived pain during pelvic examinations Men’s lack of emotional support to women Inadequate knowledge and skills about cervical cancer management Long distance to care centres Few gynaecologists and lack of pathologists Delayed histology results Lack of morphine for pain control Lack of specialized cancer treatment facilities Lack of vaccination policy for HPV Large number of women presenting with late stage cervical cancer |
Van Schalkwyk et al. [32], 2008 South Africa | To gain an understanding of the routes that women presenting with advanced cervical cancer followed, from experiencing the first signs and symptoms of disease until they received radiotherapy | Exploratory qualitative phenomenological study of the subjective experiences of women with cervical cancer | 15 consecutive women with advanced (stage 2b and worse) cancer of cervix | Limited knowledge Anxiety, fear of the unknown Stigmatization Self-efficacy Long waiting period for treatment, even longer for rural women Limited knowledge and awareness of HCW (Low index of suspicion) Culture of secrecy, taboo regarding reproductive organs Influence of significant others Misconceptions and limited knowledge of the disease Positive support from family Negative attitude of family and misinformation Dissatisfaction | At first symptoms (bleeding, pains, discharge) most women knew something was wrong but lacked the knowledge of what was required to manage the problem Most experienced concern, sadness, embarrassment, sadness and isolation People avoided them in public spaces due to the bad smell Were able to seek treatment once they knew what the problem was Average time from diagnosis to treatment was 17.3 months (11.8 for urban vs. 28.4 for rural women) First contact with HCW did not result in correct diagnosis at any level of care Some women did not report their symptoms due to embarrassment but instead only complained of minor problems Traditional healers were consulted as a result of advice or insistence of support persons Some believed that their problem was caused by demons and attended traditional healers first, going to hospital only when they did not get relief Some family members, intimate partners, workplaces, and the church were very understanding and supportive Others accused the patient of immorality, and did not allow them in church because of being unclean Most patients were not happy with the way they were treated in the healthcare facilities |
Noor-Mahomed et al. [30], 2003, South Africa | To identify suicidal risk-factors, psychological morbidity, coping, and role of social support in cervical cancer patients | Prospective cross-sectional | 21 in-patients of which 13 were planned for palliative, and 8 for radical radiotherapy | Â | Low level of satisfaction with social support Fewer of no visit from husbands and boyfriends Inadequate social support from significant others Feeling of being a burden to others Stigmatised by society Relatives lived far from the hospital |