This mixed methods study, comprising a cross-sectional study followed by qualitative FGDs, was conducted in Kuzhalmannam Panchayath of Palakkad district in Kerala, India during the period between 15/08/2022 to 14/10/2022. The Panchayath came under the field practice area of Government Medical College Palakkad. Clearance was obtained from the Institutional Ethics Committee of Government Medical College Palakkad (IEC/GMCPKD/03/22/95/pkd).

Written informed consent was acquired from all participants before administering the questionnaire in Phase 1 and before conducting the FGDs in Phase 2, ensuring that participants were fully informed about the study’s purpose, procedures, and their rights.

Inclusion and Exclusion criteria: All ASHAs working in different wards of the Panchayath were included in the study. Non willingness to participate was kept as the exclusion criteria.

Sample size: The sample size acquired was 30, as all ASHAs in the Panchayath came willing to participate in the study.

The study comprised 2 phases. Phase 1 was a cross-sectional study to assessing the ASHA’s knowledge and attitudes. Phase 2 involved qualitative FGDs to assess the needs of ASHAs to serve as facilitators in community-based cancer awareness and screening programs. In Phase 1, data regarding ASHAs’ knowledge about common cancers, their risk factors, warning signs, and screening methods, and their attitudes towards raising awareness and motivating individuals for cancer screening, were collected using an interviewer-administered semistructured questionnaire, following informed consent. In Phase 2, three FGDs with 10 ASHAs in each group were conducted using an FGD guide after obtaining informed consent. Data saturation was reached with these discussions. The study spanned two months: one week for Phase 1, four weeks for Phase 2, and three weeks for data analysis and report writing.

Development of questionnaire: The questionnaire was developed by investigators who referred to standard textbooks and after literature search [11-13]. The questionnaire underwent content validation by experts from community medicine, gynaecology, and surgery departments. The questionnaire, originally developed in English, was translated into Malayalam and then back-translated by bilingual experts. It was pilot-tested among 10 community health volunteers to assess the clarity of the questions, as well as the feasibility and practicality of administering the questionnaire. No major modifications were required at this stage. The final questionnaire consisted of a total of 27 questions, of which seven were in the sociodemographic domain, 13 were in the knowledge domain, and seven were in the attitude domain. The questionnaire contained both closed and open-ended questions. For some questions in the knowledge domain, multiple options could be selected (Questions 14-17). Attitude was assessed using a 3-point Likert scale. Investigators with prior training in qualitative research developed the FGD guide and carried out the discussions.

For the quantitative data collected in Phase 1, descriptive statistics were used to summarise the ASHAs’ knowledge and attitudes towards cancer warning signs, risk factors, and screening methods. Descriptive statistics such as frequencies, percentages, means, and standard deviations were calculated. In Phase 2, qualitative data from the FGDs were analysed using manual thematic analysis. Transcriptions of the discussions were coded manually to identify key themes and subthemes regarding the ASHAs’ needs for facilitating community-based cancer screening. Discrepancies in coding were resolved through consensus, providing a detailed understanding of the support and challenges faced by ASHAs in this role.

The mean age of the ASHAs surveyed was 44.73±5.19 years. A total of 26 (86.6%) ASHAs possessed Below Poverty Line (BPL) ration cards.

In terms of education, 15 (50%) had completed higher secondary education or a pre-degree course, while only 3 (10%) had attained graduation or higher education. A total of 24 (80%) ASHAs were serving in a single ward, with 22 (73.33%) catering to a population of 1,000 to 2,000 people. The prevalence and screening of cancer cases in the last year was ≤4 cases per 1,000 population in the catchment areas of 76.67% and 83.33% of ASHAs, respectively [Table/Fig-1].

According to ASHAs, among males, oral cancer (n=24, 80%), lung cancer (n=22,73.33%), and colorectal cancer 1 (3.33%) were the most prevalent. Females were more likely to be affected by breast cancer (n=20, 66.67%), cervical cancer (n=11, 36.67%), and thyroid cancer (n=1, 3.33%). All participants acknowledged that early detection is crucial to preventing cancer progression. Hereditary causes of cancer were recognised by 25 participants (83.33%). Breast cancer (n=10,40%) and blood cancer (n=3, 12%) were quoted as examples for cancers having hereditary causation. All participants knew that certain cancers were preventable, citing oral cancer (n=30, 100%) and cervical cancer (n=3, 10%) as examples. A total of 27 participants (90%) were aware that certain cancers have risk factors, and the majority (n=20, 74.07%) quoted smoking and chewing tobacco (n=3, 11.11%) as examples. Most of the participants understood that screening could detect cancers early (n=26, 86.67%). Cancers of the breast (n=5, 19.23%) and cervix (n=6, 23.07%) were quoted as examples for the same. Known risk factors for breast cancer included hormonal factors (n=16, 53.33%), followed by family history (n=5, 16.67%). For cervical cancer, 66.67% identified poor genital hygiene as a risk factor, but none mentioned genital warts or human papillomavirus. All ASHAs recognised tobacco smoking and chewing as major risk factors for oral cancer. Mostly known warning signs included lumps in the breast (n=6, 20%) and excessive blood loss (n=5, 16.67%). Knowledge about the screening methods was comparatively low, with Paps smears being the most commonly known method (n=6, 20%). These results are described in [Table/Fig-2,3].

In the attitude domain, all ASHAs agreed that it had been their duty to generate awareness and mobilise people for cancer screening and that people trusted them when they performed these activities. However, only 17 (56.67%) felt they had a clear understanding of cancer symptoms, risk factors, and screening methods. Total 10 (33.33%) ASHAs reported feeling anxious or fearful about generating awareness and mobilising people for screening. A majority (n=26, 86.67%) reported to have felt satisfied while generating awareness and mobilising people for screening. Additionally, 29 (96.67%) felt they were adequately participating in cancer control programs, with all agreeing that they could perform better if they were heard by authorities [Table/Fig-4].

The qualitative assessment from the FGDs revealed two major themes: Functional Needs and Aspirational Needs, with various organising categories emerging under each.

1. Functional Needs

Opportunity to get male target audience: ASHAs expressed difficulty in engaging male participants in cancer awareness and screening activities. They reported that men rarely attend meetings and are often at work, leaving women as the primary audience. ASHAs suggested implementing workplace interventions to reach male audiences effectively.

Support to control drug abuse in school health services: ASHAs highlighted the challenge of addressing drug abuse among school children, noting peer pressure and lack of parental awareness as significant issues. They emphasised the need for collective efforts involving parents, teachers, and school authorities, including parent-teacher associations and district education office, to effectively combat drug abuse and its potential as a cancer risk factor. Participant ID-04, FGD-3: “There is no use in telling students alone; their parents are unaware of it (risk).”

Intensify awareness campaigns: The prevalence of belief in traditional healers and magical remedies was noted as a barrier to cancer prevention. ASHAs reported that people often turn to these alternatives due to a lack of evidence-based scientific knowledge. They recommended intensified awareness campaigns to educate the public on scientifically proven cancer prevention and treatment methods. Participant ID-06, FGD-1: “Magic remedies are popular among vulnerable groups; remedies exist in all religions.”

Integrate counselling services: Fear and lack of knowledge were identified as significant barriers to cancer screening and early detection. ASHAs recounted instances where fear of a positive diagnosis delayed seeking help. Participant ID-01, FGD-2: “One of our patients, who had a lump, was afraid of getting tested positive for cancer, which further delayed diagnosis.” They advocated for integrating counselling services into awareness campaigns and screening programs to address these fears and encourage timely medical consultations.

Support to abolish stigma: Stigma surrounding cancer was a recurring theme. ASHAs reported that people often hesitate to disclose their condition or seek help due to privacy concerns and fear of societal judgment. Women, in particular, were noted to be uncomfortable consulting male doctors. ASHAs called for support in addressing these socio-cultural stigmas to improve cancer detection and treatment rates. Participant ID-07, FGD-3: “They think letting others know about cancer is a shame on their family.”

Support to offer comprehensive care: ASHAs described their inability to meet the comprehensive needs of cancer patients and their families, including psychosocial and nutritional support. They highlighted the necessity of a coordinated care plan involving various community resources to provide holistic support to cancer-affected families. Participant ID-04, FGD-1: “They need money; their family members need counselling, which we are unable to provide.”

2. Aspirational Needs

Recognition for their work: ASHAs expressed a desire for greater recognition and appreciation for their efforts. They mentioned feeling demoralised by criticisms from superiors for issues beyond their control, such as low attendance at screening camps during the Coronavirus Disease 2019 (COVID-19) pandemic or patient reaching out directly to PHC without the knowledge of ASHAs. Participant ID-02, FGD-2: “I got calls from superiors when one palliative case got registered with PHC without my knowledge. I was unaware because patients’ family hide it from me. Despite all activities we do, such a single incident is enough to hurt morale.”

Optimisation of incentive structure: Many ASHAs felt inadequately compensated for their extensive work and travel requirements. They reported that the low honorarium did not cover their travel expenses, and they had to bear these costs out of pocket. This financial strain was a common concern among the participants.

Need for training and supervision in cancer control programs: ASHAs highlighted the need for more training and supervision to effectively participate in cancer control programs. They often felt uncertain about the appropriate steps to take in directing patients and sought more accessible support to clarify their doubts in the field. Participant ID-08, FGD-2: “Sometimes we are doubtful whether to direct a case to doctor; sometimes we are doubtful where to direct it.”

The quantitative data showed a gap in specific knowledge areas, which was also echoed in FGDs where ASHAs requested more training and supervision. Both data sources highlight the need for enhanced educational programs. The quantitative results indicated a strong willingness among ASHAs to mobilise communities; however, the qualitative findings detailed the practical difficulties in engaging certain demographics and overcoming stigma. This triangulation suggests that while ASHAs are motivated, they need targeted strategies and support to overcome these barriers. Both data sets underscored the need for better support and recognition. The quantitative data on anxiety and the qualitative data on the challenges of inadequate pay and lack of recognition by superiors together stress the importance of addressing these aspirational needs.

In the present study, a significant portion of ASHAs displayed good knowledge about cancer prevention and early detection. For instance, 100% knew that early detection reduces cancer progression, and 90% were aware of cancer risk factors. However, awareness about specific screening methods was lower, with only 16.7% knowing about breast self-examination and 10% about mammograms. The attitude data indicated a strong sense of duty and satisfaction among ASHAs in generating awareness and mobilising people for screening but a notable portion felt anxious (33.3%) and lacked confidence in their understanding of cancer symptoms and screening methods.

According to Global Cancer Observatory (GLOBOCAN) 2022, the top five cancer site among men are lip and oral cavity, lung, oesophagus, colorectum, and stomach, while in women, they are breast, uterine cervix, ovary, lip, oral cavity, and colorectal cancer [4]. Indian Council of Medical Research (ICMR) National Cancer Registry Programme 2020 reported similar findings: the top five cancer site among men are lip and oral cavity, lung, oesophagus, colorectum, and stomach, while in women, they are breast, uterine cervix, ovary, lip, oral cavity, and colorectal cancer [4]. Regarding general cancer awareness, very little research is reported from India [14]. Also, studies done among primary healthcare workers are meagre from India, and majority of studies were done among the general population [14,15]. However, the current study found that the knowledge about common cancers among participants was better than in other research. A survey conducted in Puducherry by Veerakumar AM and Kar SS, found out that 40% of the adult population in the rural area reported lung and oral cancers as the most common cancers among men, while 17% reported stomach cancer. Furthermore, 32% of participants thought female cancers were most common in the breast, while 10% mentioned uterine cervical cancer [16]. The regular interaction of ASHAs with the health Department likely enhanced their knowledge of cancer relative to the general population in the present study.

The ASHA workers demonstrated a clear understanding of the non-contagious nature of cancer, unlike other studies involving the general population, which reported cancer as contagious [17,18]. Among the study participants, 100% were aware that certain cancers could be prevented. This level of knowledge was considerably higher compared to other reported studies [19,20]. However, there was inadequate knowledge about specific risk factors for breast and uterine cervix cancers, and warning signs of cancer. A similar lack of familiarity about signs and symptoms of cancer was found by Sharma D et al., among community health workers [21]. Awareness about specific screening methods was also lower than in previous studies done in Sri Lanka and India by Nilaweera R et al., and Shekhar S et al., [22,23].

The attitude data indicated a strong sense of duty and satisfaction among ASHAs in generating awareness and mobilising people for screening, but a notable portion felt anxious (33.3%) and lacked confidence in their understanding of cancer symptoms and screening methods. Shwetha K et al., and Shukla P et al., observed a comparable sense of duty and fulfillment by ASHAs in increasing awareness about oral cancer and screening the population for non-communicable diseases [24,25].

Focus Group Discussions (FGDs) revealed practical challenges that hinder ASHAs’ efforts in cancer awareness generation and screening. Difficulty in engaging male audiences, drug abuse among school children, and widespread belief in traditional healers were significant barriers. Stigma and fear related to cancer were also prominent themes, aligning with the quantitative finding that ASHAs felt unprepared to address these issues effectively. Gupta A et al., found that cancer survivors continue to face persistent stigma in society [26]. This finding underscores the important issue of discrimination against those who have cancer. ASHAs expressed the need for better training, recognition, and financial support, reflecting their attitudes of anxiety and dissatisfaction with current support structures. Such kind of dissatisfaction was also reported by Shet S et al., in the study conducted in Karnataka, which found that, in addition to the lack of financial incentives, ASHA employees faced routine misunderstandings with Auxillary Nurse Midwife (ANMs), family problems, transportation problems, social insecurity, lack of confidence, and an increased workload [27].

The current study highlighted the need for periodic, comprehensive training programs focusing on the latest evidence-based cancer prevention and screening methods. This must include information on risk factors and screening techniques. Such training has shown significant improvements in knowledge and attitudes, as seen in a study by Singh N et al., where ASHA workers in East Delhi exhibited 25% overall improvement in knowledge following training sessions on cervical cancer screening [28]. Regular reinforcement training has been recommended to ensure sustained behaviour change among health workers [29,30]. According to Fernandes P and Nayak S, the application of advanced methods like video-assisted teaching programs has effectively improved the knowledge level of ASHA workers about Human Papilloma Virus (HPV) infection [31].

The current study identified engaging males as target audience is a difficulty. Barriers for the same could be sought out. Strategies to achieve more male engagement could include workplace interventions and community-based initiatives targeting men [32]. Addressing the socio-cultural barriers is crucial for improving cancer awareness and screening uptake. ASHAs reported that stigma and fear significantly deterred people from seeking help. Mahalakshmi S and Suresh S, have also highlighted the influence of knowledge on screening practices and the importance of educational interventions in overcoming socio-cultural barriers [33]. Combining counselling services with awareness campaigns and screening programs can help alleviate these concerns and encourage early diagnosis.

Financial support and recognition for ASHAs are essential to enhance their motivation and effectiveness. In present study, 46.6% of ASHAs were serving a population of 1,500 to 2,500, and many reported inadequate compensation for their extensive work-related travel requirements. This aligns with findings from other studies that emphasise the need for better support structures to maintain morale and performance [34].

Furthermore, tailored strategies are needed to combat drug abuse among school children, a risk factor for cancer identified by ASHAs [35]. This requires a collective effort involving parents, teachers, and health authorities. The involvement of parent-teacher associations and district education offices could be pivotal in addressing this issue, as emphasised by the ASHAs in present focus group discussions.

The study could not assess the factors associated with knowledge and attitudes. Further studies could be conducted to evaluate the same.

In conclusion, knowledge of ASHAs is found to be insufficient for their role as facilitators for community-based cancer control programs, although they possessed good attitude for the same. The study underscores the importance of ongoing training, supportive supervision, financial support, and recognition for ASHAs to enhance their role in cancer prevention and screening. Targeted interventions to engage male audiences, for preventing substance abuse at school and to address socio-cultural barriers are crucial for improving community health outcomes. These findings support the need for comprehensive strategies to empower ASHAs to work in collaboration with multiple sectors, ensuring they are well-equipped to contribute effectively to cancer control programs in their communities.