Barriers in implementing cancer prevention programme in North Eastern India: A case study from Meghalaya

Study design and data collection

This study was grounded in the constructivist paradigm, which recognises that knowledge is socially constructed through interaction and interpretation. This paradigm enabled the understanding of subjective experiences of health care providers and frontline health workers in the implementation of the NPCDCS programme. Prior to the qualitative interviews, we conducted a desk review of the NPCDCS operational guidelines and cancer-related reports, along with a stakeholder mapping of the healthcare personnel involved with the implementation of the programme, to identify and recruit the key stakeholders for this study. Based on these activities, participants were selected purposively based on their roles and responsibilities.

Depending on the healthcare personnel’s responsibilities, a topic guide was developed and was iteratively adapted for the qualitative interviews [in-depth interview (IDI) and focus group discussion (FGD)]. The topic guide covered questions on health promotion, awareness generation, screening and early detection at the facilities, access to affordable cancer treatment, referrals, follow-ups, rehabilitation, debriefing, and gaps in programme implementation. Fifty six participants were interviewed: including seven NPCDCS programme officers from state and district level, five medical officers, five Staff nurses, one counsellor, and three community health officers (commonly recognized as Mid-Level Healthcare Provider (MLHP) from the two study districts in Meghalaya.

The in-person IDIs were conducted with the stakeholders at their respective offices. Each IDI lasted for about 30-90 min. Additionally, we conducted FGDs with 16 accredited social health activists (ASHAs) and nine auxiliary nurse midwives (ANMs) at the respective community health centers (CHC). Each FGD included 6 to 12 participants. Twenty IDIs and four FGDs were conducted between July to October 2021.

The interviews were conducted by three tribal female researchers from the same ethnic community, who were fluent in the local language and English. Their cultural familiarity helped build rapport with participants. Reflexivity notes were maintained throughout the data collection process, and during the analysis phase, the notes were referred to during discussions to document and reflect on assumptions, reactions, and evolving understanding of the issues.

Data analysis

The recordings of the interviews and FGDs were transcribed first into the local languages and subsequently translated into English by the researchers. To ensure the reliability of the data, another member of the research team, who was not involved in the transcription, reviewed the transcripts by revisiting the in-depth interviews and focus group discussions to ensure the accuracy of the data. A hybrid coding strategy was adopted; the coding began with a priori codes informed by the research framework. However, as the research team immersed into the data, new patterns and themes emerged, which prompted the development of new codes through comparison and contrast within each level and between different stakeholders. After anonymizing the codes, the categories were organized into a codebook using MS Excel (version 16.6). At the analytical stage, the categories were organized into broad themes partially aligning to the World Health Organization’s (WHO) Health Systems Building Blocks framework¹³. These codes were reviewed by multiple researchers to ensure reliability. NVivo-12 software was used to organize the data and codes, facilitating the identification and categorization of emergent themes in alignment with the research question.

Implementation continuum of NPCDCS in Meghalaya

The NPCDCS in Meghalaya was implemented in 2014 with the establishment of the State NCD Cell. Majority programme administrators (2/3) stated that the NPCDCS was implemented initially in the EKH and the West Garo Hills districts. It was eventually expanded to other districts in a phased manner (Figure). At the time of the study, the NPCDCS programme was being implemented in all the districts of Meghalaya. Remaining program administrators (1/3) informed that, while the activities relating to the control and prevention of hypertension, diabetes, and stroke were initiated from 2015-2016, the cancer-related activities of the NPCDCS programme were initiated only in 2018-2019. The COVID-19 pandemic caused further setbacks to the implementation of the cancer component of the programme. It is worth noting that oral cancer screening has been implemented in Meghalaya by another programme, the National Oral Health Program, since 2014-2015.

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Figure.

Map of the study settings. Source: Self-generated using QGIS (version 3.34, ‘Prizren’) for visualization and boundaries were taken from the dataset of the Documentation for the India Village-Level Geospatial Socio-Economic Data Set: 1991, 2001.

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With cancer, it is only in the year 2018-19 that they started the training for cervical cancer, and besides, the oral cancer screening was conducted only at the PHC level where the medical officer was available (Programme administrator, 002, State).

Health system facilitators and barriers

Themes that are primarily related to the health systems are (i) availability, which includes procedural access, provision of services and availability of human resources; (ii) affordability in terms of financial access; and (iii) communication in terms of sharing of information effectively.

Availability

Healthcare providers shared that they are mandated, as per NPCDCS guidelines, to conduct population-based cancer screening for oral, breast, and cervical cancers through visual inspection with acetic acid (VIA) at CHC NCD clinics, primary health centre (PHCs) and health and wellness centres (HWCs). All the NCD clinics (CHC) were able to conduct only oral and breast examinations as the acetic acid for VIA was unavailable. The health providers (9/13) at the NCD clinics (CHC) reported that oral cancer screening was regularly conducted by dentists based at these health centres, and such screenings were also conducted in schools and communities since a separate national health program catering to oral health was implemented simultaneously. They also (10/13) mentioned that patients exhibiting signs of tooth pain, tooth decay or oral plaque were referred to CHC for further examination. In communities, the ASHAs and ANMs conduct NCD screenings using the community based assessment checklist (CBAC) form, referring individuals with high-risk scores of four and above to CHC medical officers, who may further refer them to tertiary facilities. In EJH, the frontline health workers informed that public participation in filling the CBAC form was low due to reluctance amongst screened individuals to share personal information (such as substance use), which led to missing data. In particular, women were also hesitant to disclose abnormal vaginal discharge, unlike in the EKH.

Some women refused to disclose their information with us and feel shy to talk about unusual discharges- (Frontline health worker, 004, EJH)

In EJH, health providers continue to emphasise the importance of self-breast examination (SBE) for women in both districts; (4/7) also reported a low acceptance of breast and cervical screening as women were unaware of its importance. This is accentuated as the available IEC content included only the risk factors of oral cancer.

For cancer, the IEC content mainly focused on oral cancer, but we are yet to develop IEC for other cancer screening, especially for breast cancer and cervical cancer.- (Programme administrator, 002, State).

The staffing of the NPCDCS programme in Meghalaya aligns with the national guidelines, but variations exist in human resource appointment patterns across the NCD clinics. Some medical officers (5/6) and a few staff nurses (3/6) indicated task shifting due to them being responsible for managing other health programmes, such as maternal and child health, communicable and non-communicable disease initiatives, besides patient care, and sometimes, these took precedence over cancer prevention activities.

We have to see patients at the NCD clinic. Since we are integrated into the hospital, we have other duties such as OPD, patient rounds, and writing patients’ discharge certificates as well. We have to do everything so if we can have more manpower, the programme will be streamed line quite well (Healthcare provider, 001, EKH).

All health providers (13/13) highlighted frequent vacancies in the counsellor positions, which are short-term contracts. Hence, appointed counsellors often left for better opportunities; only one of the six identified NCD clinics had a counsellor during the time of data collection. In all four FGDs, ASHAs and ANMs expressed feeling overwhelmed with activities from different programme at the community level, sometimes leading to neglect of cancer-related tasks.

The lack of privacy for breast and cervical cancer screenings at health camps, as reported by the health providers (9/13), was another barrier to cancer screening. Apprehension and lack of awareness of the importance of cancer screening were other factors that resulted in low screening rates in rural areas as compared to urban areas.

Positive response is more from the urban areas than the rural areas. In the urban areas, when we go to camps in college and survey different government departments, they are much more ready. Even if they do not have any complaints yet, they are willing to come for screening.- (Programme administrator 004, EKH)

Affordability

Healthcare providers reported that another reason for the low uptake of cancer screening is the preference for traditional medicine, as it is commonly used for other ailments and is accessible and affordable in remote areas. They also expressed that people opted for traditional medicine if they felt that the discomfort was caused or related to their cultural beliefs.

Many people still prefer traditional healers. One person whom I know was diagnosed with throat cancer. He was not ready to go to the hospital for treatment. He had always believed in traditional medicine. After a few months, he passed away.- (Healthcare provider, 001, EKH)

On many occasions, healthcare providers (4/13) stated that patients do not follow through referrals for several reasons, such as high costs associated with undergoing further investigations and out-of-pocket expenditures. They (10/13) also reported that people had fatalistic beliefs that cancer was incurable, which hindered treatment seeking.

Communication

For the operationalization of the NPCDCS, the district programme administrators (4/5) aligned the activities with the national guidelines. Monthly inter-sectoral meetings of NPCDCS involved various departments and were chaired by the district Deputy Commissioner (administrative head of the district). However, formal review meetings at the NCD clinic were not held, prompting healthcare providers to express the need for such meetings to understand roles and progress and improve work quality.

No, we never have review meetings for the NPCDCS programme alone- (Healthare providers- 009, EKH).

Several healthcare providers (6/13) stated that referrals were essential for the confirmation of diagnosis. When a patient has been diagnosed with cancer at the CHC and has been referred to a tertiary hospital, the CHC does not have a systematic system to track the patient’s access to treatment in both study districts; the CHC does not know whether the patient has gone to the tertiary hospital for treatment or sought alternative treatments.

As I mentioned before, there are many suspected cancer cases to which we refer to (Shillong) civil hospital (the only state referral hospital for oncology treatment), but patients do not come for follow up. For example, they come to us with difficulty in swallowing, and when they eat, there would be vomiting. This is surely a suspected case of oesophageal cancer, so we refer to the tertiary centre for further management. When they return to the village, they do not return for follow up. This is actually what happens, and we cannot keep track to help them.- (Healthcare provider, 003, EKH)

At EJH, healthcare providers stated that adhering to referrals was even more difficult, as the referral was usually to the only tertiary hospital in Shillong, about 87 km from the district headquarters. This problem was accentuated among patients in both districts who were from low socio-economic backgrounds due to the high costs associated with diagnosis, treatment, transportation, or other out-of-pocket expenditures.

Capability: facilitators and barriers

The capability barriers relate to the knowledge and skills of HPs involved in the NPCDCS programme.

Knowledge and skills to implement effective cancer prevention

The NPCDCS aims to enhance the capacity of HPs through various training programmes, including population-based screening (PBS) for oral, breast, and cervical cancer. The state programme administrators (2/3) reported ongoing training workshops across districts with varying completion rates due to differences in staff uptake capacity. In EKH, many training programmes were conducted for medical officers, NCD staff, CHOs, and ASHAs. In contrast, the initiation of such training in EJH was delayed due to COVID-19, as reported by the HPs (5/7). Despite this, some long-serving FHWs could not recall receiving any cancer-related training in the recent past. In the HWCs, cervical cancer screening was not conducted, as the training for the CHO was yet to be initiated in both districts.

State officials and administrators recognized the inadequacy in training, particularly for cervical cancer screening, compared to oral and breast cancer screening. They mentioned that efforts were underway to increase training frequency in cancer prevention to address the delays caused by the COVID-19 pandemic.

We need to get all the stakeholders to know how to do the screening for cancer, especially VIA. We are still lacking behind with cancer screenin – (Programme administrator, 001, State).

In terms of the knowledge of communities about cancer, the healthcare provider commented that the IEC materials were mostly in English, which was a significant barrier for many people. The materials in the local language had just been received from the NCD cell during the study.

Intention facilitators and barriers

The intention barriers are the provider’s motivation and confidence in conducting effective cancer screening. Social influence has a vital role to play in NCD service delivery.

Motivation, belief and influence

With the implementation of NPCDCS, all the State and district programme administrators (8/8) and a large proportion of healthcare providers (7/13) including frontline health workers reported that since the introduction of the NPCDCS programme, there has been a slowdown of cancer initiatives. Health promotion, screening and sensitization efforts were now mostly focused on hypertension and diabetes; cancer awareness was usually conducted on designated days such as Cancer Day or National Cancer Awareness Week.

… for other problems such as diabetes and hypertension, awareness is frequently conducted, but for cancer, I do not remember someone giving cancer awareness (Frontline health workers-007, EKH).

The healthcare providers (3/13) reported that the community knowledge about cancer was primarily acquired from social networks, such as friends and family members who have experienced the disease. According to the healthcare providers (8/13), people in the community were often reluctant to talk about cancer due to discomfort, which was indicative of perceived stigma. Cancer-induced psychological distress among participants included concern over family, family responsibilities and meeting treatment expenditures. According to healthcare providers, stigma associated with cancer of breast and cervix seems to be common in Meghalaya, in both rural and urban areas as patients commonly use terms such as ‘shy’ and ‘fear’ with cancer. Such hesitancy in talking about cancer in the community was also identified as a significant barrier to timely medical consultation. Therefore, the diagnosis is usually kept a secret among close family members and not often disclosed to others.

Yes, stigma is still very prevalent. Till today, we find patients coming to us with very advanced cases of breast cancer, cervical cancer, and oral cancer. They do not want to tell or show themselves to anyone as they have those symptoms, so they feel shy. They do not want to be examined by the doctor or by anyone. Till now, we have patients with breast cancer who come with fungating masses; even those from urban areas. We get patients coming with cervical cancer that has spread to the bladder and the rectum as they were having this stigma–(Healthcare provider, 004, EKH).