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Barriers to help-seeking for cancer in India: A scoping review
For correspondence: Dr B. Reshmi, Department of Health Information Management, Manipal College of Health Professions, Manipal Academy of Higher Education, Manipal, India e-mail: reshmi.b@manipal.edu
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Received: ,
Accepted: ,
How to cite this article: Dhar RR, Reshmi B, Holla R. Barriers to help-seeking for cancer in India: A scoping review. Indian J Med Res. 2026;163:534-40. doi: 10.25259/IJMR_1676_2025.
Abstract
Background and objectives
Cancer is a leading cause of death in India, with delays in diagnosis and treatment contributing to poor outcomes. Although several studies document these delays, most focus on single cancer types or specific regions. This review aimed to synthesise evidence across cancers to identify barriers to help-seeking and their implications for cancer control in India.
Methods
A scoping review was conducted using Arksey and O’Malley and Levac frameworks, guided by the PRISMA-ScR checklist. The protocol was registered on the Open Science Framework. Systematic searches were carried out in PubMed, EMBASE, and Scopus for studies published in English between January 2010 and December 2024. Eligible studies included empirical research on barriers to help-seeking among individuals with cancer in India. Titles and abstracts were screened using Rayyan, followed by full-text review. Data were charted and synthesised thematically.
Results
Of 349 records screened, 30 studies met the inclusion criteria. Barriers were categorised as: financial and economic, lack of awareness/knowledge, cultural stigma and embarrassment, reliance on alternative medicine, systemic and health system inefficiencies, psychological fear and distrust, family and gender bias, and COVID-19-related disruptions. These factors collectively led to delays in presentation, diagnosis, and treatment of cancer in India.
Interpretation and conclusions
Delays in cancer care in India arise from intersecting socio-economic, cultural, systemic, and gendered barriers. Strengthening insurance coverage, patient navigation, awareness initiatives, gender-sensitive services, and long-term investments in rural infrastructure and psychosocial support are critical to improving timely cancer care.
Keywords
Cancer care
Disparities
Help-seeking barriers
Healthcare access
India
Cancer remains one of the leading causes of death worldwide, with low- and middle-income countries (LMICs) contributing about 70% of global cancer deaths.1 In 2022, India recorded 1,413,316 new cancer cases; projections indicate this number could reach 2.1 million by 20402 and lung cancers and breast cancer were the leading sites of cancer. Despite increasing availability of treatment facilities, cancer outcomes remain poor, with a large proportion of patients presenting at advanced stage.3 Early diagnosis and timely treatment are critical for improving survival, yet multiple delays persist across the cancer care pathway.4 Evidence from India highlights delays at several levels. Patient delays, linked to low awareness, stigma, and socio-economic disadvantage, are particularly reported in breast and oral cancers.5 Diagnostic delays are common and often related to limited infrastructure, referral delays or obstacles and dependence on informal providers.6 Even after diagnosis, initiation of treatment is frequently hindered by financial barriers, long waiting times, and system-level inefficiencies.7,8 These delays contribute to advanced-stage diagnosis and poorer survival outcomes. Although evidence is growing, most Indian studies focus on individual cancer sites (such as breast or oral cancers), use variable definitions of delay, and rarely map the entire care pathway from symptom recognition to treatment initiation.9,10 Few studies integrate quantitative evidence with patient experiences,11,12 and limited attention has been given to synthesising findings across cancer types. This review aims to address these gaps by systematically mapping evidence on delays in cancer care in India, identifying determinants across patient, diagnostic, and treatment intervals, and highlighting implications for early detection, referral pathways, and cancer control policy.
Methods
The scoping review was carried out using the frameworks outlined by Arksey and O’Malley.13 To ensure comprehensive reporting of essential elements, the Preferred Reporting Items for Scoping Reviews (PRISMA-Scr) guidelines were utilised,14 and their recommended items (Supplementary Table I). The protocol for this review was prospectively registered on the Open Science Framework (registration DOI is 10.17605/OSF.IO/YFTG5)
Stage 1: Identifying the research question
The review question was developed through a structured process involving brainstorming, refinement of ideas, and an initial scoping of the literature on barriers to health-seeking behaviour for cancer in India. This iterative process helped frame the key guiding questions: What are the barriers to help-seeking behaviour for cancer in India? And how do socio-cultural, economic, geographic, and healthcare system factors influence help-seeking behaviour for cancer in India? To ensure methodological rigor, the PCC (population, concept, context) framework, as recommended in the Joanna Briggs Institute (JBI) Manual for Evidence Synthesis,15 was applied. In this framework, the population comprised individuals in India affected by cancer, the concept focused on barriers to help-seeking for cancer symptoms or diagnosis, including socio-economic, cultural, behavioural, health system, and structural challenges, and the context was limited to studies conducted in India or those specifically addressing the Indian population.
Stage 2: Identifying relevant studies
To systematically identify relevant studies, key concepts were developed based on the research question, and appropriate keywords and subject headings were selected for each concept. A comprehensive electronic search was conducted across three major databases: EMBASE, PubMed, and Scopus. The search was limited to studies published in English to ensure accessibility and consistency in interpretation. The search strategy was designed to capture the breadth of literature addressing barriers to help-seeking behaviour among individuals diagnosed with cancer in India. To ensure the inclusion of the most current evidence, the search was restricted to studies published between January 2010 and December 2024. An overview of the database-specific search strategies, including search terms and Boolean operators used (Supplementary Table II). In addition to the database search, the reference lists of all included articles were screened manually to identify any additional eligible studies that may not have been captured through electronic searches. This multi-pronged approach ensured a comprehensive and rigorous identification of literature relevant to the scope and objectives of the review.
Stage 3: Study selection
The titles and abstracts of the retrieved papers were screened by a reviewer (RD) for eligibility using predefined criteria on the Rayyan platform, a web-based tool for managing systematic reviews. In cases of uncertainty, the opinions of the other two reviewers (BR and RH) were sought. Following the initial screening, AA obtained and independently examined the full texts of eligible studies. The included studies were then subjected to data charting for the final scoping review in line with the PRISMA 2020 guidelines, with the process illustrated in the flowchart ( Fig. 1). Studies were eligible if they were published in English between January 2010 and December 2024, focused specifically on barriers to help-seeking behaviour among individuals diagnosed with cancer in India, and employed quantitative, qualitative, or mixed-methods designs. Articles that addressed only general cancer epidemiology without emphasis on barriers to help-seeking, non-English publications, and unpublished manuscripts were excluded. To ensure comprehensive coverage, the reference lists of included papers were also screened for additional relevant studies.
Stage 4: Charting the data
Supplementary Tables III and IV illustrate the following data about the included studies: authors, title, publication year, study location, patient characteristics, study design and method, and the barriers to help-seeking behaviour in individuals diagnosed with cancer in India.
Stage 5: Collating, summarising, and reporting the results
The research employs a narrative synthesis methodology, which includes tables that detail the characteristics of the studies (Supplementary Tables III and IV). A comprehensive review was conducted in India from January 2010 to December 2024 to identify relevant literature. The charting table’s quantitative and qualitative data were used to chart and report the barriers to help-seeking behaviour in individuals diagnosed with cancer in India.
Results
This study identified 349 unique records after removing the duplicates. Of these, 29 peer-reviewed studies and one grey literature source met the inclusion criteria, resulting in a total of 30 papers3,5,12,16-42 that were included in the final review. A comprehensive summary of each study is presented in the Study Characteristics Table (Supplementary Tables III and IV). The table was organised by author, year, study design, study population, and key findings, thereby providing readers with a clear and nuanced understanding of the collective results. The presentation of these findings has been carefully structured to facilitate precise and comprehensive data interpretation. These studies employed diverse research methods, including qualitative, quantitative, and mixed methods approaches. Table summarises the frequency of studies that examined barriers and delays in cancer help-seeking in India.
| Sl. no | Barriers/factors category | Frequency of studies (n=30) |
|---|---|---|
| 1 | Financial and economic constraints | 18 |
| 2 | Lack of awareness/Knowledge | 20 |
| 3 | Cultural beliefs, stigma, embarrassment | 15 |
| 4 | Reliance on alternative medicines/traditional healers | 12 |
| 5 | Systemic/health system barriers | 14 |
| 6 | Psychological, fear, distrust, and normalisation of symptoms | 10 |
| 7 | Family/social influence and gender bias | 9 |
| 8 | COVID-19-related disruptions | 3 |
Economic and systemic barriers
Financial constraints, including out-of-pocket expenses, lack of health insurance, and indirect costs such as wage loss and transport, were among the most consistently reported challenges.16,19,42 These burdens were magnified during the COVID-19 pandemic, which reduced healthcare access.32 Systemic inefficiencies, such as referral delays, reliance on unqualified practitioners, and limited patient navigation pathways, also contributed significantly to prolonged delays.20,33
Socio-cultural barriers
Cultural beliefs, stigma, and embarrassment often discouraged individuals from seeking timely care. Reliance on alternative medicine and spiritual healing was reported across diverse regions, with attributions of illness to supernatural causes or fatalism further delaying diagnosis.18,29 Stigma, fear of diagnosis, and embarrassment were particularly pronounced among women with reproductive and breast cancers.21,22,34
Factors contributing to delayed presentation
Delays in cancer presentation were closely tied to socio-demographic and educational disadvantages. Rural residence, low literacy, and poverty were consistently associated with late-stage diagnoses.21,22 Poor awareness of symptoms and limited understanding of cancer screening further contributed to prolonged diagnostic timelines.20,24,43 Misconceptions about cancer’s curability or attribution of vague symptoms to non-serious causes compounded these delays, particularly in rural settings.29,35
Delay in help-seeking
Fear, stigma, and reliance on traditional healers were repeatedly associated with delayed engagement with formal care systems. For instance, tobacco-related cancer patients delayed formal consultations by an average of 5.5 months,18 while tribal populations in Meghalaya often sought indigenous treatments first.29 Psychological apprehension, distrust in healthcare, and normalisation of symptoms also contributed to significant delays.36,41
Treatment-seeking and social influences
Family and social networks heavily shaped treatment-seeking pathways. In many cases, patients initially consulted family members or private practitioners, delaying engagement with public health systems.24,43 Social stigma, shyness, and community perceptions reinforced late presentation, particularly among women. Conversely, urban residency and stronger healthcare accessibility were associated with reduced delays.41
Socio-demographic disparities
Gender inequities were evident, with patriarchal norms prioritising men’s health. Cultural burdens in patriarchal settings further exacerbate these challenges,22,29 while gender biases deprioritise female health, leaving women dependent on male family members for health decisions.35,39,40 Childhood cancer data revealed a male-to-female treatment ratio of 2.44:1.39 Women also faced barriers related to stigma, wage loss, and lack of female healthcare providers.34 Age and literacy further shaped outcomes: older, less-educated populations were more likely to present with advanced-stage cancers.30,43 Rural disadvantage compounded these effects, with illiteracy, stigma, and poor access creating persistent challenges.36,38
Other related challenges
The psychological burden of cancer, including financial stress, fear, and social stigma, further hindered care-seeking. Studies emphasised the need for psychosocial support systems.25 Systemic inefficiencies such as poor referral pathways and pre-hospital delays were widely noted, underscoring the need for stronger early detection and navigation strategies.33,37 Comorbidities and low health literacy among the elderly and disadvantaged groups also restricted timely care access.27
Discussion
This scoping review highlights the complex interplay of financial, cultural, systemic, and psychosocial barriers that delay cancer diagnosis and treatment in India. While many of these barriers mirror challenges faced in other LMICs, such as Bangladesh, Iran, and Nepal, this review underscores the distinctive Indian context, where high out-of-pocket expenditures, limited insurance penetration, and fragmented referral systems converge with cultural stigma and gendered healthcare inequities to exacerbate delays.33,44-46
A key contribution of this review lies in its synthesis of evidence across breast, cervical, and other common cancers in India, moving beyond the cancer-specific focus of earlier studies. Integrating findings across regions and populations demonstrates how barriers are not only economic or infrastructural but also deeply embedded in cultural practices and gender norms. For example, the reliance on traditional healers in tribal communities18,29 and patriarchal restrictions on women’s healthcare access39 reflect how structural inequities intersect with cultural norms to perpetuate delays. This broader lens advances understanding of how multiple determinants interact in India’s cancer care pathways ( Fig. 2).
Another novel aspect is the review’s focus on the emerging role of government schemes such as Ayushman Bharat PM-JAY in mitigating financial barriers. Evidence suggests that enrolment significantly improves treatment initiation,47-49 yet gaps remain in package coverage, population reach, and service delivery at primary and district levels. This points to a need for expansion and reform of insurance programs as a short-term strategy, alongside longer-term investments in healthcare infrastructure and patient navigation systems. The review also identifies psychosocial dimensions, including stigma, fear of disfigurement, and distrust in health systems, which are less frequently addressed in Indian studies despite being well-documented in other LMICs.50 These findings highlight the importance of embedding psychosocial support and culturally sensitive health promotion within cancer control strategies.
This review identifies critical research gaps, particularly in psychosocial dimensions, longitudinal analyses, and pan-India studies.49,51 However, most of the included studies are region-specific, hospital-based, or based on small samples, with uneven representation across cancer types and limited longitudinal follow up. Despite these constraints, triangulating findings across diverse sources strengthens the conclusions and advances a more holistic perspective on barriers to timely cancer care in India.
This review highlights the need for both immediate and long-term measures to reduce delays in cancer care in India. In the short term, refining AB PM-JAY to cover diagnostics and outpatient care, scaling up community-based awareness campaigns, and introducing patient navigation systems can address financial and systemic barriers.51 Gender-sensitive strategies, including female providers and outreach for women and sexual minorities, are essential to tackle inequities.51 Long-term actions should focus on rural infrastructure, mobile diagnostics, telemedicine, psychosocial support, stronger cancer registries, and pandemic-resilient models.52 Together, these priorities provide a practical roadmap directly linked to the barriers identified in this review.
To conclude, delays in cancer care in India stem from intersecting financial, cultural, gendered, and systemic barriers, further worsened by the COVID-19 pandemic. Addressing these challenges requires immediate steps such as expanding insurance, patient navigation, and awareness programs, alongside longer-term investments in rural infrastructure, psychosocial support, and resilient health systems. These strategies, if prioritised, can reduce inequities and improve timely cancer care.
Acknowledgment
Authors acknowledge Ms. Kripa Josten and Dr Vennilla J for their technical assistance during this review.
Author contribution
RRD: Conception and design of the study, establishing the protocol and methodology, initial literature review, data analysis, data charting process, manuscript writing; BR: Data extraction, data charting process, manuscript writing. RH: Data extraction, data charting process, manuscript writing. All authors have read and approved the final printed version of the manuscript.
Data availability statement
Data are available upon reasonable request. The data that support the findings of this study are available from the corresponding author upon reasonable request.
Financial support and sponsorship
None.
Conflicts of Interest
None.
Use of Artificial Intelligence (AI)-Assisted Technology for manuscript preparation
The authors confirm that there was no use of AI-assisted technology for assisting in the writing of the manuscript and no images were manipulated using AI.
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