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Abstract
Introduction Starting cancer treatment early can improve outcomes. Psychosocial factors influencing patients’ medical help-seeking decisions may be particularly important in low and lower middle-income countries (LMIC) where cancer outcomes are poor. Comprehensive review evidence is needed to understand the psychosocial influences on medical help-seeking for cancer symptoms, attendance for diagnosis and starting cancer treatment.
Methods Mixed-methods systematic review registered on PROSPERO (CRD42018099057). Peer-reviewed databases were searched until April 2020 for studies assessing patient-related barriers and facilitators to medical help-seeking for cancer symptoms, diagnosis and treatment in adults (18+ years) living in LMICs. Quality of included studies was assessed using the Critical Appraisal Skills Programme tool. Data were synthesised using meta-analytic techniques, meta-ethnography or narrative synthesis as appropriate.
Results Of 3963 studies identified, 64 were included. In quantitative studies, use of traditional, complementary and alternative medicine (TCAM) was associated with 3.60 higher odds of prolonged medical help-seeking (95% CI 2.06 to 5.14). Qualitative studies suggested that use of TCAM was a key barrier to medical help-seeking in LMICs, and was influenced by causal beliefs, cultural norms and a preference to avoid biomedical treatment. Women face particular barriers, such as needing family permission for help-seeking, and higher stigma for cancer treatment. Additional psychosocial barriers included: shame and stigma associated with cancer such as fear of social rejection (eg, divorce/disownment); limited knowledge of cancer and associated symptoms; and financial and access barriers associated with travel and appointments.
Conclusion Due to variable quality of studies, future evaluations would benefit from using validated measures and robust study designs. The use of TCAM and gender influences appear to be important barriers to help-seeking in LMIC. Cancer awareness campaigns developed with LMIC communities need to address cultural influences on medical help-seeking behaviour.
- cancer
- public health
- systematic review
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Key questions
What is already known?
Most reviews/studies of influences on medical help-seeking for cancer have focused on high-income countries (HIC), and report barriers such as low cancer awareness and negative beliefs about cancer.
Most relevant reviews that included studies only conducted in low and lower middle-income countries (LMICs) (n=3) and reviews with a global focus including studies conducted in both LMICs and HICs (n=4) focused on specific tumour sites and/or synthesised their data narratively.
No mixed-methods systematic reviews with meta-analysis and meta-ethnography have been conducted to explore the patient-related psychosocial influences on medical help-seeking for cancer symptoms, attendance for diagnosis or the start of treatment in LMICs.
What are the new findings?
We found a relatively high prevalence of use of traditional, complementary and alternative medicine (TCAM) which was associated with prolonged help-seeking.
Women faced particularly high levels of barriers, such as needing family permission to seek medical help, and gender-related stigma (eg, for breast cancer treatment).
Our review also identified critical research design limitations reducing the utility of the literature (eg, use of different time lengths to define ‘delay’ in cancer help-seeking).
Key questions
What do the new findings imply?
Many studies used non-standardised measures/designs, increasing the difficulty integrating findings across studies.
Future evaluations should use robust study designs and validated measures that have been translated and pilot tested.
Our results suggest that barriers such as low symptom knowledge and negative beliefs about cancer may be universal barriers to help-seeking, whereas the use of TCAM and female-specific barriers to medical help-seeking may be more prevalent in LMICs.
Our findings provide a basis for development of interventions to encourage medical help-seeking in the earlier, more treatable cancer stages to reduce the burden of cancer in LMICs.
Introduction
Early cancer diagnosis and treatment are key to effective and efficient treatment.1 Cancer disproportionately affects low and lower middle-income countries (LMIC) with rapidly increasing incidence2 and poorer survival1 when compared with high-income countries (HIC). Earlier stage cancer at diagnosis has a significant impact on survival, particularly in LMICs where advanced technology critical for treatment at later cancer stages is generally less available.3 4 One factor related to access to early treatment is prompt medical help-seeking for potential cancer symptoms.5 Early cancer detection and treatment are seen by the WHO as major public health and economic issues.6
Following the Aarhus statement,7 8 the cancer early diagnosis field has moved from describing the medical help-seeking process in terms of ‘patient delay’, with its connotations of blame, to using time intervals as set out in the Model of Pathways to Treatment (MPT9; eg, ‘patient interval’). The MPT describes processes underlying medical help-seeking for cancer symptoms and accessing treatment. The model delineates the time between a person first noticing a change in their body and the beginning of cancer treatment into four intervals (figure 19 10): (1) the appraisal interval (from noticing a bodily change to perceiving a reason to seek help); (2) the help-seeking interval (from perceiving a reason to seek help to first contact with the medical professional); (3) the diagnostic interval (from first contact with the healthcare professional to diagnosis of cancer); (4) the pretreatment interval (from formal diagnosis to the start of cancer treatment). The patient interval combines both the appraisal and help-seeking intervals. In the current article we refer to longer and shorter intervals for the patient (medical help-seeking for cancer symptoms), diagnostic and pretreatment intervals (attendance for investigations or starting treatment). Although the MPT was designed to be applicable globally,9 there are few examples of the model being applied to LMIC contexts.11–13
Model of Pathways to Treatment. HCP, healthcare professional. Reprinted with permission from Walter F, Webster A, Scott S, et al. The Andersen model of total patient delay: a systematic review of its application in cancer diagnosis. J Health Serv Res Policy 2012;17:110–8.
Most research on cancer symptom appraisal and help-seeking has been conducted in HIC. In two previous systematic reviews of psychosocial influences on help-seeking for cancer symptoms, only 10%14 and 15%15 of studies were conducted in LMICs. Previous systematic reviews conducted in LMICs have focused on understanding barriers to help-seeking for breast or head and neck cancer using narrative data synthesis.16–19 To date, no mixed-methods systematic review has investigated patient-related influences on medical help-seeking for cancer symptoms, attendance for examination or the start of cancer treatment in LMICs. Review of existing evidence regarding the psychosocial influences on cancer help-seeking in LMICs is essential, in order to develop effective interventions to facilitate earlier diagnosis and treatment.1 6
How patients appraise and act on potential cancer symptoms varies by tumour site and symptom type.20 21 The current systematic review therefore included all cancer types to examine the patient-related psychosocial influences on help-seeking for cancer during the patient interval and decisions to attend healthcare during the diagnostic and pretreatment intervals in LMICs. Diverse study designs were included to identify predictors of help-seeking using meta-analytic techniques for the quantitative studies, and to gain an in-depth understanding of barriers and facilitators to help-seeking through a meta-ethnography22 of qualitative studies. Quantitative data were analysed narratively to identify barriers and facilitators, including data not able to be included in the meta-analysis, to ensure results were comprehensive. Data were synthesised to form overarching conclusions and recommendations.
Methods
This systematic review was conducted and reported in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines23 (online supplemental file 1).
Supplemental material
Search strategy and selection criteria
We conducted a mixed-methods systematic review of qualitative, quantitative and mixed-methods studies to explore patient-related barriers and facilitators to medical help-seeking behaviour for cancer symptoms and decisions to attend healthcare for diagnosis and start of cancer treatment. The review protocol was registered with the International Prospective Register of Systematic Reviews (PROSPERO) prior to study selection (https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=99057).
Inclusion criteria
Studies written in English that assessed (A) patient-related (B) barriers/facilitators to medical help-seeking for cancer symptoms, diagnosis and the start of treatment (C) in adults (18+ years) (D) living in LMICs were included. LMIC was defined as low-income or lower middle-income countries as classified by the World Bank (https://datahelpdesk.worldbank.org/knowledgebase/articles/906519-world-bank-country-and-lending-groups), correct at the time of protocol development (May 2018). There were no limits on date of publication or study methodology. Study designs that assessed and reported observed help-seeking behaviour (retrospectively reported actual help-seeking behaviour in patients with cancer or symptomatic participants) or hypothetical help-seeking behaviour (anticipated help-seeking in asymptomatic community or population samples) were included.
Qualitative studies that did not include time to help-seeking but where participants described their reasons for longer patient, diagnostic or pretreatment intervals were included. Included studies were required to report the contribution of one or more of the following influences on help-seeking: symptom knowledge, symptom interpretation, social influences, use of traditional or complementary medicine, cancer beliefs, competing priorities, expectations/beliefs about care seeking, availability and access to care, financial barriers, understanding/navigating the health system, cultural barriers and cancer treatment beliefs. Variables were selected based on our previous review15 and extensive scoping searches.
Exclusion criteria
Studies that were not about cancer and/or were conducted in high-income or upper middle-income economy countries were excluded. Studies that were not written in English, review papers, policy documents and conference abstracts were excluded, although relevant review papers were reviewed to identify studies for potential inclusion. Studies were excluded if they did not focus on (1) barriers to cancer help-seeking, (2) adult participants’ perspectives, or were (3) low-quality studies24 as evaluated by the Critical Appraisal Skills Programme (CASP) tool.
Search strategy
Peer-reviewed literature in the electronic databases of Cochrane Library, MEDLINE (1946–2020), Global Health (1910–2020) and PsycINFO (1806–2020) was searched by TD and GMC up to April 2020. Initial searches were conducted in May 2018, and updated in June 2019 and April 2020. A comprehensive search strategy was developed by the study team and a subject librarian with expertise in literature searching24 to retrieve all studies relevant to the research question. Search terms relating to LMICs, symptomatic help-seeking, decisions to initiate treatment, cancer and barriers to help-seeking were used to search for relevant studies (online supplemental file 2 for full list of terms). Study authors were emailed by BW if additional information was required.
Titles and abstracts of studies were reviewed against the inclusion and exclusion criteria by TD and GMC. Full texts of included studies were reviewed for inclusion or exclusion by TD and GMC (figure 2). Reference lists of included studies were checked manually by GMC for additional studies. Ten per cent of studies at each stage were independently reviewed for inclusion by GMC, HQS and KB, with good agreement (93%). All discrepancies were resolved through discussion.
Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) flow chart of study selection. HIC, high-income countries.
Data analysis
Data were analysed using a parallel results convergent design,25 where qualitative and quantitative findings were analysed separately and integrated in the discussion.
Data extraction
Data from all included studies were extracted onto an Excel sheet (online supplemental file 3 for full list of extracted variables). Country classifications by income group were determined by data collection year and the World Bank (https://datahelpdesk.worldbank.org/knowledgebase/articles/906519-world-bank-country-and-lending-groups).
Quality appraisal
The CASP (www.casp-uk.net) tools were used to assess quality of studies in the following domains: validity of results, research design, participant recruitment, data collection, ethical issues, data analysis and reporting, and consideration of the contribution of their research. The tools were adapted to include questions to assess the quality of the patient interval.7 8 When assessing the quality of the reported patient interval the following were considered: the length of time from cancer diagnosis to data collection; whether self-report patient interval data were triangulated with medical records; how the patient/diagnosis/pretreatment interval was classified and how the patient interval was analysed.7 8 Quality was rated as low, medium or high. Low-quality studies were excluded. The main reasons for exclusion included insufficient information provided about data collection procedures (n=18), or where intervals were measured but not reported or defined (n=7).
Quantitative summarisation
All included quantitative studies were discussed in detail during team meetings (BW, GMC, AD, YD, HH). Due to the high level of heterogeneity in study measures and research designs within the context of relatively few studies, a formal meta-analysis was not feasible for most variables. However, meta-analytic techniques were used to quantitatively summarise study results regarding use of traditional, complementary and alternative medicine (TCAM) (eg, traditional healers, herbal medication, prayer camps, spiritual healers) as a predictor of help-seeking in the patient interval because TCAM use was consistently reported between studies and a high proportion of quantitative studies reported TCAM use. We first summarised the proportion of research participants who used TCAM in the patient interval, weighting studies by the square root of their sample size (proportional to the inverse of the SE for that sample’s parameter estimate). We then assessed the proportion of participants who experienced significantly longer patient intervals, defined as a patient interval of 3 months or longer. Third, we summarised within-study statistics of relations between TCAM use and the probability of a longer patient interval. We extracted from the report (or computed if not reported) the OR for the effect of TCAM on ‘delay’, calculated as the odds of having a longer patient interval if a participant had used TCAM, over the odds of having a longer patient interval given a participant had not used TCAM. The mean OR, weighted by the square root of each study’s sample size, was computed. Subgroup analyses were conducted for TCAM use as a function of the region in which the studies were conducted (Africa vs Asia) and type of cancer (breast cancer vs non-breast cancer). All other quantitative data were analysed narratively.26
Qualitative summarisation
Qualitative data from all qualitative and mixed-methods studies were synthesised using Noblit and Hare’s22 seven-stage meta-ethnographic approach (table 1). Meta-ethnography reporting guidance27 was used.
Noblit and Hare’s seven-stage meta-ethnographic approach
Patient and public involvement
Patients and public were not directly involved in this review.
Results
Of the 3511 studies screened for inclusion in the review, 64 met the inclusion criteria (figure 2).
As shown in table 2, data were collected using quantitative survey methods (n=38), qualitative interviews or focus groups (n=24) and mixed-methods (n=2) to assess observed (n=46), hypothetical (n=16) and both observed and hypothetical (n=2) help-seeking behaviours.
Characteristics of included studies
Thirty-five studies were conducted in sub-Saharan Africa (Uganda, n=7; Nigeria, n=6; Ghana, n=5; Ethiopia, n=4; Kenya, n=3; Mali, n=2; multiple countries, n=2; Cameroon, n=2; Rwanda, n=1; Burkina Faso, n=1; Malawi, n=1; Sudan, n=1). Fourteen studies were conducted in South Asia (India, n=6; Pakistan, n=5; Bangladesh, n=2; Nepal, n=1). Ten studies were conducted in the Middle East and North Africa (Jordan, n=5; Egypt, n=4; Morocco, n=1). Four studies were conducted in East Asia and Pacific (Indonesia, n=4). One study was conducted in Latin America and Caribbean (Haiti, n=1).
Most studies focused on breast cancer (n=44). The remaining 20 studies focused on the following cancer sites: colorectal (n=3), multiple sites (n=6), cervical (n=4), oral (n=2), ovarian (n=1), prostate (n=1), lung (n=1), nasopharyngeal carcinoma (n=1) and Kaposi carcinoma (n=1). Studies focused on the patient interval (n=54), diagnostic interval (n=10) and pretreatment interval (n=21).
Of the included studies, 11 were high quality and 53 were medium quality.
Quantitative studies
TCAM. Frequency of TCAM use in the patient interval was reported in 11 studies (n=2415 participants; 10 breast cancer studies, 1 non-breast cancer study), and the mean proportion of TCAM use across the studies was 0.20 (95% CI 0.09 to 0.31).28–38 The mean proportion of TCAM use in the patient interval in African studies (n=7) was 0.23 (95% CI 0.07 to 0.40), and 0.17 (95% CI −0.08 to 0.42) in Asian studies (n=4). Five studies (n=953 participants; 4 African studies, 1 Asian study) assessed the association between TCAM use and a longer patient interval, with a mean OR of 3.60 (95% CI 2.06 to 5.14).28 32 34 35 39 The mean OR was 4.32 (95% CI 1.54 to 7.11) for breast cancer studies (n=3) and 2.58 (95% CI 1.39 to 3.77) for non-breast cancer studies (n=2). Nine studies (eight African studies, one Asian study) assessed the proportion of participants who used TCAM who also had patient intervals greater than 3 months, with the mean proportion equal to 0.45 (95% CI 0.29 to 0.61).28 34 36 39–44 The proportion of participants who used TCAM who had patient intervals longer than 3 months was 0.51 (95% CI 0.27 to 0.76) in breast cancer studies (n=6) and 0.33 (95% CI 0.06 to 0.60) in non-breast cancer studies (n=3).
Gender roles. In five female-only observed studies of patients with breast cancer, competing priorities such as housework or childcare were reported as a barrier in the patient interval in Pakistan32 and in African countries35 41 42 45 (table 3). In three breast cancer studies, women reported embarrassment about the medical examination as an actual45 or anticipated46 47 barrier to help-seeking in the patient interval in India46 and in African countries45 47 (table 3).
Summary of narrative synthesis for quantitative studies
Cancer knowledge. Lower cancer symptom knowledge was associated with longer anticipated patient intervals in three hypothetical studies with various cancers in Jordan48 49 and lung cancer in Nigeria,50 while one hypothetical study found no association between ovarian cancer symptom knowledge and anticipated time to help-seeking in Jordan.51 In hypothetical studies, good lung cancer symptom knowledge was associated with higher educational attainment and higher income in Nigeria,50 while good ovarian cancer symptom knowledge was associated with higher income, but not educational attainment in Jordan.51 Living in an urban area in India was associated with good breast cancer symptom knowledge in one hypothetical study.30
Misattribution of symptoms12 32 34 40 44 45 52 was associated with a longer patient interval in seven observed studies of patients with breast,38 44 45 52 colorectal,40 cervical39 and oral53 cancers (table 3). Absence of pain was reported as a barrier to help-seeking in the patient interval in four observed studies of patients with breast cancer45 54 55 or Kaposi sarcoma28 (table 3).
Emotional barriers to help-seeking. Fear of cancer was a barrier to help-seeking in the patient interval in five observed studies of patients with breast32 35 42 44 and oral cancers53 in African, Asian and Caribbean countries (table 3). Fear of breast cancer surgery was not associated with longer patient intervals in one observed study conducted in Uganda.34 Concerns about escalation of their cancer and a negative impact on relationships led to refusal of treatment in two observed studies of patients with breast cancer conducted in African countries.38 56
Access barriers. In four observed studies, long travel times to hospital were reported in African countries35 36 57 and in Indonesia31 (table 3). In two hypothetical studies conducted in Jordan, participants anticipated difficulty in arranging transport as a possible barrier in the patient interval48 49 (table 3).
Financial barriers. In three hypothetical studies47–49 and 15 observed studies of patients with breast33 35 41–45 54 and non-breast12 28 36 39 53 57 58 cancer conducted in African, Asian and Caribbean countries, participants cited financial barriers as major contributors to longer patient intervals or not seeking medical help for symptoms33 58 (table 3). In two observed studies conducted in African countries, patients with breast cancer refused56 or postponed treatment36 due to financial issues (table 3). Participants in observed studies conducted in African countries reported having to rely on gift/loans from friends and family during the pretreatment interval to fund treatment for various cancers36 57 (table 3).
Cancer beliefs. Three hypothetical studies conducted in India29 and in African countries37 59 reported awareness of the benefits of early breast cancer diagnosis. One hypothetical breast cancer study conducted in Kenya37 and one observed study conducted in India with various cancers60 reported beliefs that cancer was incurable (table 3). Negative breast cancer beliefs were more prevalent in women living in urban areas in Morocco in one observed study45; conversely, one hypothetical study reported higher negative beliefs about breast cancer among women living in rural areas in India.30 Participants in an observed study in India with various cancers believed that cancer was caused by evil spirits and could be cured by rituals and worshipping.60 In one hypothetical study conducted in Nigeria, women believed that breast cancer was caused by evil spirits.59 In an observed study of multiple cancers conducted in India, over half of the sample thought that cancer was contagious or were unsure, with those from lower socioeconomic groups more likely to believe that cancer was contagious.60
Social influences. In two observed studies of patients with oral53 and breast61 cancers conducted in Pakistan, encouragement to seek medical help from their social network promoted help-seeking in the patient interval53 61 and attendance for diagnostic appointments in the diagnostic interval.61 However, one observed study conducted in Pakistan found that patients with breast cancer who disclosed symptoms to their social network experienced longer patient intervals.32 One observed study conducted in Uganda found that patients with breast cancer with no social support experienced longer patient intervals.34
Qualitative studies: meta-ethnography
Narrative summary data (third order) are presented below. Supporting illustrative participant quotes (first-order data) are presented in table 4.
Supporting quotes (first-order data) from meta-ethnography
TCAM. Most studies reported that the use of TCAM lengthened the patient, diagnostic and pretreatment intervals. In observed studies in Indonesia and in African countries, TCAM was typically sought prior to modern medicine in the patient interval,62–67 after diagnosis in the pretreatment interval68 69 or both70 highlighting that help-seeking and accessing healthcare is a non-linear process.
In hypothetical and observed studies mostly conducted in African countries, it was common to believe that breast11 64 66 67 69 71–74 and prostate75 symptoms were caused by evil spirits, a spell, or witchcraft or a benign cause (eg, ‘a boil’).66 72 73 Beliefs about causality generally prompted participants to visit TCAM healers in the patient interval in observed studies of patients with breast cancer in African countries.62 64 69 72 74 76 Due to causal beliefs, TCAM was seen as a logical option to resolve symptoms and treat the perceived underlying cause in the patient interval, and was strongly influenced by cultural norms around TCAM use in Indonesia68 77 and in African countries.64 66 69 75 78 In hypothetical73 79 and observed63 65 66 studies conducted in African countries and Indonesia, participants reported beliefs that traditional medicine could cure breast,63 66 73 nasopharyngeal65 and cervical79 cancers; whereas Egyptian participants in a hypothetical breast cancer study tended to believe that traditional medicine could only cure non-cancer conditions such as coughs and colds.80
Help-seeking from TCAM practitioners after diagnosis substantially lengthened the pretreatment interval. In African countries and in Indonesia, TCAM was commonly sought after diagnosis in patients with breast62 64 66 69 78 and non-breast65 68 cancer. In these studies, use of TCAM in the pretreatment interval was usually encouraged by friends/family due to perceived affordability,37 62 65 68 69 78 easier access37 65 and more trusted care64–66 68 79 when compared with modern medicine. In observed studies of patients with breast cancer conducted in African countries, TCAM was sought in the pretreatment interval to avoid mastectomy, thereby preserving breasts to avoid social exclusion.63 66 69 77 In African patients with breast cancer, biomedical cancer treatment was sought in the pretreatment interval when symptoms did not resolve or worsened, typically at an advanced cancer stage.63 64 66 78
Gender effects. In observed studies of patients with breast62 63 74 81 and oral82 cancers, and hypothetical breast cancer studies37 73 conducted in African and Asian countries, it was common for women to require permission from the family, usually their husband, prior to help-seeking in the patient interval37 62 63 73 74 81 82 and for husbands to make the final decision regarding treatment in the pretreatment interval.74 In observed breast cancer studies conducted in African and Asian countries, husbands were a key influence on either prompting help-seeking or refusing permission to seek medical help in the patient interval or treatment in the pretreatment interval.62 63 69 74 81 However, sometimes the husband’s decision was over-ridden by the extended family.63 81 Breast examination by a male doctor was reported to be a key barrier in the patient and diagnostic intervals for Indian,67 Egyptian80 83 and Bangladeshi81 women due to cultural beliefs about modesty.67 80 81 83
As primary caregivers, women in observed and hypothetical studies conducted in Indonesia and African countries reported prioritising family and work commitments over their personal health as barriers to help-seeking for breast64 66 67 70 73 78 and non-breast13 68 79 cancer symptoms in the patient interval. Medical help was sought in exceptional circumstances, typically if they were in pain and could not carry out domestic or childcare responsibilities.70 80 Limited financial resource meant that healthcare costs for women were often lower in priority, and when women in breast cancer studies eventually sought medical help/treatment in all intervals, some described feeling guilty about using limited financial resources towards medical costs.72 73 77
Cancer knowledge. Knowledge of breast63 64 73 76 80 83 and non-breast65 cancer was generally obtained from social networks, although some participants in African13 64 71–73 and Egyptian80 breast cancer studies described the influence of cancer awareness campaigns. The point of diagnosis for some African patients with breast cancer63 64 66 and Indonesian patients with nasopharyngeal65 cancer in observed studies was the first time they had heard of cancer.
In observed and hypothetical studies conducted in Asian and African countries, breast,80 81 cervical,13 prostate75 and oral82 cancer symptom knowledge was poor and mainly restricted to lumps as a cancer symptom.64 73 76 In observed studies of patients with breast cancer, misattribution of symptoms contributed to longer patient intervals.11 63 64 66 70 72 74 76 77 81 82 84 Lack of pain was a key barrier to help-seeking in the patient interval in observed breast cancer studies conducted in African countries due to misattribution .62–64 66 70 72 74 84 Painless symptoms and/or symptoms that did not hinder daily functioning lengthened the patient interval in observed studies of African patients with breast cancer63 64 66 74 78 84 and Indonesian patients with nasopharyngeal65 cancer. Symptoms that persisted, changed or became painful motivated help-seeking in the patient interval in observed studies of patients with breast62–64 70 78 83 84 and cervical13 cancers.
Stigma. In hypothetical and observed studies conducted in Asian and African countries, cancer was a source of shame and stigma72 75–77 82 that influenced help-seeking across all intervals due to fear of social rejection and treatment, and presumed death after diagnosis.37 62 75 81 82 In Indonesia and in African countries, cultural norms around cancer stigma and secrecy after breast63 72 74 76 77 and prostate75 cancer diagnosis meant that there was a lack of exposure to cancer, and negative illness synonyms such as ‘the bad disease’63 64 76 80 were used. Cancer taboo was reinforced in hospital settings in African countries where health professionals referred to cancer as ‘that disease’ or ‘the sickness’,72 and commonly withheld details of the diagnosis from the patient.74
In observed and hypothetical studies conducted in Asian and African countries, breast11 62 64 66 67 69 72 73 77 78 81 and oral82 cancer stigma stemmed from beliefs about the causes of cancer in general, where cancer was mainly viewed as a form of punishment, out of one’s control or the patients’ destiny.11 62 64 66 67 69 72 73 77 78 81 82 These beliefs lead to fear of disownment or mistreatment from family or the community in Asian and African countries.37 67 72 76–78 81 83 Participants in observed breast cancer studies reported that seeking social support after diagnosis in the pretreatment interval was potentially risky due to stigma associated with cancer.64 74 In observed studies, strong religious beliefs facilitated acceptance of the consequences of their cancer in Indonesian patients with nasopharyngeal cancer65 and Ghanaian patients with breast cancer63 leading to refusal of cancer treatment, accepting God’s will or entrusting God to cure the cancer without the need for biomedical treatment.63–65 74 77 82
Financial barriers. In hypothetical and observed studies, high medical and transportation costs were a major barrier in Asian and African studies across all intervals,11 13 62 63 65–78 80 81 83 particularly for patients living in rural areas. Many participants did not have healthcare insurance, or insurance coverage was limited to certain treatments.65 72 75 77 83 The pretreatment interval in Asian and African studies was lengthened while patients with breast11 62 70 77 81 83 and non-breast13 65 68 cancer in observed studies obtained the financial means to cover medical costs and/or transport, often using more affordable TCAMs. Patients in observed breast and non-breast cancer studies conducted in Indonesia and African countries11 62 70–72 74 relied on relatives, the community and the church for financial support for medical bills and transport costs which shortened the pretreatment interval.
Social influences. Social networks—family, friends, the local community, elders, the church—were found to play a pivotal role in help-seeking at all intervals. In observed studies conducted in African and Asian countries, typically spouses, close relatives or church leaders were consulted on discovery of a breast63 64 70–72 78 84 or non-breast13 65 82 symptom. Symptom disclosure could lengthen or shorten the patient interval in observed studies of patients with breast and non-breast cancer conducted in Asian and African countries depending on whether symptoms were attributed to cancer by friends and family11 13 63–65 69 70 72 74 78 82–84 and whether patients were encouraged to seek help from TCAM11 62–64 69 70 74 or modern medicine.11 13 64 65 70 72 74 78 82 84
Beliefs about cancer. Most studies assessing fearful and fatalistic cancer beliefs found that these lengthened all intervals. In observed and hypothetical studies conducted in Asian and African countries, breast,37 62–64 66 67 73 74 76 77 80 nasopharyngeal,65 oral82 and prostate75 cancers were conceptualised as dangerous, painful and deadly. Negative beliefs were usually based on experiences of people within patients’ social network with a cancer diagnosis.62–64 66 74–78 83 There were few accounts of positive survival stories.74
For women in observed breast cancer studies conducted in African countries, the possibility of disfigurement lengthened the pretreatment interval or led to treatment refusal.63 69 72 74 78 In hypothetical and observed studies conducted in Indonesia77 and in African countries,37 63 69 71 72 78 the removal of a woman’s breasts through mastectomy was considered to diminish her sexual identity, self-worth, personal relationships and value in society. In hypothetical and observed breast cancer studies, women recounted examples of cancer diagnoses that resulted in divorce or social rejection.37 72 74 76 78 81
Modern medicine. One hypothetical breast cancer study conducted in Egypt reported positive views towards modern cancer treatment,80 although few women in hypothetical and observed breast cancer studies reported knowledge about the benefits of early diagnosis for breast cancer.62 72 73 76 80 In most observed and hypothetical studies conducted across African and Asian contexts, modern biomedical treatment for breast63 64 66 67 70–72 77 81 and non-breast65 75 79 cancer was generally perceived as expensive, invasive and ineffective, with harmful side effects that destroy the body and/or lead to disfigurement and shame. In some hypothetical and observed studies conducted in African countries, breast cancer surgery was believed to escalate cancer progression.62 72 73 77
Suspicion and mistrust of biomedical care in Asian and African countries lengthened the patient and pretreatment intervals in observed breast cancer studies, and prompted visits to TCAM practitioners.11 66 67 69 70 76 83 In hypothetical and observed studies conducted in African and Asian countries there was a perceived imbalance of power between doctors and patients, with reports of health professionals dominating discussions about treatment and lacking empathy.65–67 69 70 73 76 77 79 83 Patients with breast67 70 76 77 and nasopharyngeal65 cancers in observed studies were reluctant to question their diagnosis or ask questions in Asian and African countries. This power imbalance was most prominent in uninsured, lower income, less educated and rural patients, where some studies reported instances of mistreatment or suboptimal treatment.11 65 76 77 79 In observed studies of patients with breast11 76 77 and nasopharyngeal65 cancers, some low-income uninsured patients who were eligible for government assistance to cover healthcare costs sometimes described refusing the financial support due to fear of differential treatment by medically trained health professionals.
Discussion
This was the first comprehensive review of psychosocial barriers to medical help-seeking behaviour for cancer symptoms and access to healthcare in LMICs. Use of TCAM was a key barrier to prompt medical help-seeking in LMICs. Consulting TCAM was influenced by causal beliefs about symptoms, familial pressure to visit a traditional healer, ease of access, affordability and a preference to avoid biomedical treatment. Biomedical treatment was perceived as invasive, disfiguring, ineffective and expensive, and in some contexts medically trained doctors were perceived as untrustworthy and corrupt. Fear, shame and stigma associated with cancer were a barrier to help-seeking that prompted refusal of treatment due to fear of social rejection. Women were seen as having particular high levels of challenges and barriers to prompt cancer help-seeking, such as needing permission from the husband or family to contact the medical system, their health being seen as lower value and female-specific stigma around breast cancer. The cost of travel and healthcare appointments/treatment was a key barrier across all intervals.
Consistent with previous narrative reviews and one meta-analysis conducted in HIC and/or LMIC contexts, low symptom knowledge,14 15 85 misattribution of symptoms,16 19 85 negative beliefs about cancer14 18 19 and fear of treatment17 86 were associated with longer patient intervals, suggesting these are universal barriers to cancer help-seeking. Findings from our meta-ethnography indicate that cancer is highly stigmatised in LMICs partly due to beliefs about causation and low knowledge of the disease, and impacts help-seeking across all intervals. One review of breast cancer studies in LMIC contexts found fair to moderate evidence that the use of TCAM healers lengthened the patient interval,17 while our updated review covering all cancers found strong evidence that use of TCAM was prevalent and a key influence on help-seeking across all intervals. No review in HIC has reported use of complementary medicines, suggesting that TCAM use may be particularly important in LMICs.
Due to the predominance of breast cancer studies and patient interval studies, we were unable to draw strong conclusions in relation to help-seeking in the diagnostic and pretreatment intervals, or for non-breast tumours and male help-seeking. Additionally, some findings were presented descriptively, meaning it was not possible to assess their influence on time to help-seeking. Heterogeneity among the quantitative studies precluded a formal meta-analysis87 due to inconsistencies in help-seeking thresholds (eg, definitions of ‘delay’ ranged from 2 weeks50 to 6 months84) and the use of a wide range of psychosocial measures, many of which were unvalidated, increasing the difficulty of integrating findings. There were additional inconsistencies in the reporting of statistical results, for example, not reporting non-significant findings and not providing full information needed to interpret statistical results. The quantitative study team met frequently to discuss each paper in detail and the data set as a whole to agree on which variables could be analysed using meta-analytic techniques. Due to consistency of reporting and the high number of studies that assessed TCAM use, TCAM use was the only variable that could be analysed using meta-analytic techniques. It is a limitation of our review that other non-TCAM variables could not be summarised using meta-analytic techniques for comparison. Due to small sample sizes, it was not possible to assess whether TCAM use varied as a function of region. There are methodological limitations associated with measuring observed and hypothetical help-seeking behaviour, with a possible intention–behaviour gap in hypothetical studies and recall bias in observed studies. We included both types of studies in our review to balance the limitations associated with each study design.
Future research on cancer help-seeking behaviour in LMICs should consider using validated measures7 8 with reporting of all statistical results (significant or not) and use of ORs, to allow for summarisation across studies. Freely available and validated measures include the Cancer Awareness Measure,88 the Awareness and Beliefs about Cancer Measure,89 and the Cancer-Symptom Interval Measure.90 Pilot testing should be conducted with a sample of potential participants to ensure cultural relevance of translated or new survey items. A number of studies in our review included limited assessment of TCAM, and further research is required to understand in depth the influences of TCAM on the patient interval.
Lack of symptom knowledge and negative beliefs about cancer appear to be universal barriers to cancer help-seeking behaviour, suggesting that elements of existing awareness campaigns (eg, Be Clear on Cancer; https://www.cancerresearchuk.org/health-professional/awareness-and-prevention/be-clear-on-cancer) could potentially be adapted for LMICs. Cultural and context-specific barriers reflecting TCAM use and gender influences on medical help-seeking are key barriers in LMICs that would need to be addressed sensitively and in collaboration with local communities.
Conclusion
With rapidly rising cancer incidence in LMICs, efforts to improve early cancer diagnosis and treatment through system-level interventions and individual behavioural interventions are critical to reduce cancer mortality. Interventions must address major barriers to medical help-seeking for symptoms and decisions to access healthcare for diagnosis and treatment in LMICs by raising cancer awareness, modifying negative beliefs and addressing cultural barriers such as TCAM use and barriers for women.
References
Footnotes
Handling editor Seye Abimbola
Twitter @grace_mccutchan
Contributors GMC, KB and BW designed the review. GMC coordinated the review. GMC and TD designed and ran the literature search and screened records. GMC, BW, HQS, KB, AD, YD and HH extracted the data, assessed the quality of studies and conducted dual coding and data analysis. All authors contributed to interpretation of the data. GMC drafted the paper, and all authors critically revised the paper. All authors approved the final version.
Funding GMC and HQS were funded by the Health and Care Research Wales funded centres of the Wales Cancer Research Centre and the Primary and Emergency Care Research Centre Wales, respectively, to conduct this review. BW and AD were funded by the US NIH grant R21 TW011294.
Competing interests None declared.
Patient consent for publication Not required.
Provenance and peer review Not commissioned; externally peer reviewed.
Data availability statement Data are available upon request. All data will be made available upon reasonable request to the corresponding author.
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