Expressing collective voices on children’s health: photovoice exploration with mothers of young children from the Indian Sundarbans

Conceptual framework

The model of ‘voice’ proposed by Lundy, et al.[21] describes four key components that enable participants (mothers, in this case) to raise their voice for the betterment of their children's health The first component is ‘space,’ which in this paper refers to mothers’ opportunities to express their views regarding their children’s health and its determinants. Researchers’ external assistance played a key role in supporting mothers to collectively express their views, by providing them cameras and facilitating linkages with the local decision makers. The second component is ‘voice’ in terms of articulating their views within and outside the community about child health problems and solutions. The third component is ‘audience,’ which refers to the local decision makers, who support programme implementation in the Sundarbans and who can link communities to district and state level functionaries. The fourth component of the model is ‘influence,’ where mother’s views influence how local decision makers work on mutually agreed actions to address identified child health problems, ranging from improving roads and health facilities to implementing new health programmes for children in the Sundarbans.

Study setting and project site selection

The study was conducted in three blocks (administrative units with an average population of 125,000) of the Indian Sundarbans. These three blocks (Patharpratima, Namkhana and Kultali) were purposively selected out of the six blocks determined by Kanjilal et al. in 2010 [19] to be most vulnerable, in terms of climatic vulnerability and service delivery. The three blocks include a mixture of deltaic (completely river locked) and non-deltaic (attached at least by one side with the mainland) terrain. All three blocks are geographically hard to access, are in close proximity to reserve forests, and are multi-caste (Indian social stratification system) in composition. Two villages were selected purposively from each of the three blocks to ensure three deltaic and three non-deltaic villages in total. However, after initiation of the study, work had to be stopped midway in two deltaic villages of the Namkhana Block due to seasonal flooding, geographical hazards and lack of electricity, resulting in photovoice only being implemented in four villages (Fig. 1).

The researchers involved in the photovoice project had been working in the study site for the previous 3 years under the Future Health System Research Programme Consortium. They were therefore already known and trusted by the community when the photovoice project was initiated. The present study was implemented with the help of a Community Based Organisation (CBO) from Kultali block. The CBO support team was responsible for reserving space for the meetings, informing the community about the project and collecting names of mothers as prospective participants. They also worked with the researchers to involve the village and block level decision makers in the photovoice dissemination interface activities.

Whose voice was represented?

The study involved experiential participants [22]: mothers who had at least one child 6 years of age or younger and first-hand knowledge and experience about child health issues. The participants were chosen from a list of mothers on the basis of the following three criteria: (1) can commit full participation throughout the project period; (2) enthusiastic about group work; and (3) willing to share their experiences with an outside audience.

Participants were sought across different strata of society in terms of religion, caste, livelihood and economic status. Researchers from the Institute of Health Management Research (IIHMR) and personnel from the CBO worked as facilitators throughout the process.

The ‘audience’

The researchers and mothers photovoice group leaders communicated with local decision makers throughout the photovoice project to maintain their involvement. This communication involved briefing local decision makers about the project’s aims and objectives from the beginning; updating them periodically about the process, emerging issues and challenges faced by mothers; and following up to ensure their active participation in the meetings with mothers at the end of the project. This constant engagement sought to increase their commitment to implementing the action plans developed. Local decision makers were not involved in the photovoice group meetings held with mothers when initially discussing photos taken to ensure that mothers were able to select the emerging themes most representative of their experience, without undue influence from decision makers.

Creating groups, conducting meetings and taking photographs

With the help of the CBO, two photovoice mothers’ groups were formed in each selected village. Each group had between eight and ten mothers, to ensure there was enough time for each mother to meaningfully express her views on the determining factors affecting her children’s health. Each group selected a leader amongst themselves through consensus. This leader was responsible for taking care of the group’s camera, rotating the camera among the group members, gathering the mothers for group meetings, and liaising with local decision makers.

There is no hard and fast rule for the number of meetings required for a successful photovoice project. This project scheduled sufficient time for a minimum of two rounds of taking photos and discussion. The first two meetings were on the photovoice process and discussed the research process, use of the cameras, issues of power and ethics, potential risks to the participants, how these risks could be minimized and how to use consent forms. Mothers discussed and agreed that the central theme of their photographs would be the determinants of their children’s health against the socio-economic and climatic backdrop of the Sundarbans. No further guidance was given to mothers for what should be photographed. Frills-free digital cameras were allotted to the mothers. The mothers took photos for a week to get used to handling a camera, as some of them were using an electronic instrument for the first time.

After the first two meetings, mothers met once a week with their leaders and once every fortnight with the CBO personnel and researchers. After the photos were taken, they were presented in the fortnightly group meetings discussion with other mothers, facilitated by the CBO personnel and researchers. As the photos were taken with digital cameras, they were viewed on a laptop and mothers talked about their respective photographs by looking at the screen. The narratives related to each photograph were recorded. Two rounds of taking photos and discussions were done over a total period of 6 months. No changes in the process were required after the first round; however, mothers reported becoming increasingly comfortable using the camera and became more aware about the ethical issues related to taking the photographs. In total, 16 group meetings were arranged with mothers during the project period. Discussions in the group meetings were audio recorded and replayed for further review during following meetings. During group discussions, the participants, CBO staff and researchers also noted the challenges faced by mothers while taking photographs, including some child health issues that mothers wanted to photograph but could not. The nature of these challenges and the significance of the un-photographed issues were recorded, listed and indexed at the time of group meetings.

The number of photographs discussed in each group meeting varied by the number of photos taken by that group. A total of 49 photographs that were discussed in meetings were not used further due to technical issues like blurring, finger appearing in the shot, repetitive picture and low light. In all, mothers took a total of 467 usable photographs.

Ethics considerations

The Ethical Review Board of IIHMR University approved the study and each of the mother participating in the photovoice project signed or provided a thumb stamp on local language (Bengali) consent forms, which were read out to illiterate mothers by CBO staff. Mothers who participated in the photovoice project were trained in taking verbal consent before photographing any human subjects, and respecting the anonymity and confidentiality of human photograph subjects. Mothers were trained to discuss the purpose of the photograph with the people appearing in them or the owners of assets being photographed. Mothers were also trained to discuss if anyone felt hesitant or uncomfortable with being in a photo, not to force them to take part and if anyone wanted a photo of themselves to be deleted, this would be accommodated. Mothers assured those being photographed that nowhere would their name or identification would be revealed. Measures were also taken to ensure that mothers understood the implications of being the creators of the photographs and how these photos are going to be utilized publicly. Participants were made aware that their photographs and respective narratives would be presented in the newspaper, on websites and in journals. Moreover, in response to mothers’ suggestions, a photovoice booklet was published in local language and distributed among the participants after the project. The interface meetings with local decision makers were also recorded only with the consent of all those present.

Data collection and analysis

Data collection was an ongoing process that began with training and supporting mothers to take photos, then documenting the mothers’ narratives about their photos, and finally working with the mothers to share the photos with local decision-makers and plan for action. The dataset consisted of the photographs, the recorded narratives explaining the photographs, group meeting notes and interface meeting notes. All the narratives and group meeting notes were translated from Bengali into English. Translation was done by the researchers and care was taken to ensure that the essence of the participants’ perceptions was adequately reflected.

Data were analysed using framework analysis approach [23]. After the field data collection was over, the researchers indexed the photographs and narratives in NVivo10 software to develop a thematic categorization of the following issues: (1) general health problems,(2) water and sanitation, (3) geographic accessibility of health services,(4) parents’ livelihood,(5) climate,(6) general awareness, and (7) social issues affecting child health. These themes were developed by combining smaller, more detailed themes that had some overlap. For example, non-communicable diseases, mother and child health problems and manifestation of malnourishment were combined under ‘general health problems’. Issues with embankments and coping strategies in relation to climate crisis were combined under the broader head of ‘climate’. Analysis of the group meeting notes revealed several additional child health determinants not photographed by the participants: (1) non-functionality of the public health services,(2) generation gaps between mothers-in-law and daughters-in-law, and (3) domestic violence.

The above categorization was shared with the mothers by the researchers through group meetings for their suggestion and approval. Mothers largely agreed with the categorizations made by the researchers and after the consultation, the photographs and narratives were broadly categorized into two groups:(1) determinants of child health that were captured in the photographs and(2) determinants of child health that were not captured in the photographs.

Throughout data analysis, the mothers got more involved and emerged as co-researchers through the following stages:

Codifying

After identifying the determinants of child health, mothers sorted the photographs and narratives by type of social determinant. Mothers, with support from the researchers, then decided the most significant determinants and the most powerful photographs to present to local decision makers.

Photographed determinants

Mothers identified child malnutrition, mother’s health during pregnancy, and non-communicable diseases as the most significant aspects of child health. Malnutrition among children was of great concern to mothers. Most mothers stated there were different stages of malnourishment ranging from severe to moderate and reported having learned about these stages from health workers. However, they reported that they could not photograph the stages, as they perceived very little difference in physical manifestation of these stages. “We have a lot of malnourished babies but we could not capture this phenomenon well as it is difficult to explain and distinguish their outward manifestation” (Mother 76, Age 24 secondary education, fishing, general caste). Mothers identified the linkage between mother’s ill health and lack of proper care like adequate food, medicine and rest during the pregnancy with the health of the newborn.

Mothers identified water and sanitation as one of the biggest factors that affect their children’s health, pointing particularly to the scarcity of fresh drinking water and un-hygienic uses of pond water (Fig. 2). They reported that uneven distribution of the tube wells left them no option but to use water from nearby ponds.

Participants also stated that open defecation is an issue of concern especially for children as they are more prone to get infections from this practice. Even the primary schools and ICDS centres lack toilet facilities, which forces children to defecate in the open (Fig. 3).

Parents’ livelihood was another major issue identified by mothers. They attributed household food insecurity and related malnourishment of children to the uncertain livelihoods of the parents, which increased after cyclone Aila in 2009. They also expressed their concern for the security and care of the children in cases where both parents go out for work, particularly given the risk of drowning in the area (Fig. 4).

Almost all the mothers expressed concern about poor access to health providers and child care sources like ICDS centres). They worried about poor access between islands but also problematic within-village access due to the miserable condition of the roads and the poor availability of transportation (Fig. 5).

The respondents echoed similar concern when they were discussing climate as a factor determining child health. Climatic shocks damage their livelihoods (such as farmland) and destroy their shelters, leading to a direct and indirect effect on the health of the children (Fig. 6). Floods during yearly monsoons increase water borne diseases among the children. Repeated breaching of embankments, erosion of land mass and irregular rainfall indirectly harm the mental and physical well-being of children.

Mothers unanimously agreed on the following social issues affecting the health of mothers and children: early marriage, recurrent pregnancies, and physical stress during pregnancies. During the group discussions, mothers pointed to early marriage as the issue that concerned them the most due to the link between child malnutrition and repeated pregnancies. “This girl is still very young but she is already a mother. Both the mother and child are malnourished.” (Mother 2, age 39, primary education, fisher woman, schedule caste)

Determinants that were not photographed

During the group meetings mothers explained that some important determinants of child health could not be captured through photographs. The first such determinant is the unavailability of the medical practitioners in their respective villages. One mother stated: “We do not have doctors in our village. Even village doctors (informal health practitioners) are not available all the time due to the bad condition of the roads.” (Mother 75, age 32, primary education, fisher woman, schedule caste). Mothers also raised the issue of non-availability of veterinarians for treating their animals, as they are important resources for household food security for the children. “We do not have any veterinary doctor here. In the recent past a lot of livestock have died of unknown ailments and each time we are faced with a loss of the family resource” (Mother 5, age 46, illiterate, crab catcher, schedule tribe).

The generation gap between the mothers-in-laws and daughters-in-laws emerged as an important issue regarding child care. Mothers stressed that mothers-in-laws did not understand the need for general cleanliness of children and their traditional practices during child illness were a cause of concern. “I repeatedly told my mother-in-law to wash the vegetables properly with tap water before cooking the food. But she just won’t listen to me. I have started to prepare food separately for my boy”(Mother 10, age 27, secondary education, housewife, general caste).

Another factor that could not be photographed was domestic violence and harsh treatment from mothers-in-laws. Mothers stated that they usually did not get sufficient rest and proper nutritional care during their pregnancy due to harsh treatment from their mothers-in-laws. As a result, mothers perceived that this led to women giving birth to malnourished children. “The women have to fetch water from a distant source even in their last few months of pregnancy. They force themselves to do so to avoid the quarrels with the mother-in-law” (Mother 49, age 31, secondary educated, agriculturist, schedule caste). Mothers also raised their concern about the fact that some women were even beaten by their in-laws.

Interaction with the local decision makers

Mothers used their photographs as tool to discuss child health determinants through a series of interactions with local decision makers in all three blocks, both at the village level and block level. A total of 138 local decision makers were present in the six interface meetings across three blocks. During the interactions, one representative selected by the mothers presented the significant determinants of child health by displaying the photos through a projector. An important criterion of selecting the presenter was outspokenness and the ability to communicate her group’s concerns effectively to the target audience members.

Additionally, local decision makers provided valuable feedbacks on the problems and agreed to take action or make linkages with other decision-makers. The block level decision makers agreed that the interface meetings provided an opportunity to improve their connection with communities, especially those that lived in hard-to reach areas. Most of decision makers stated that it was helpful to see the photos and hear the community’s perceptions of child health issues to better understand gaps in the existing programmes and develop plans for future programs. An NGO leader in one of the research blocks stated: “It is good to see the problems of the remote pockets of the block, where we usually could not go due to inaccessibility. On this platform we have been able to see, hear and discuss what the community wants and what we can do to solve their problems” (Local decision maker 2, NGO head). A leader of a gram panchayat, the lowest level administrative unit, noted: “The village under my jurisdiction is very remote. I did not know that the road was in such bad condition. I will try to make it concrete before monsoon”(Local decision maker 5, Panchayat Pradhan).

The solutions discussed and developed with the mothers and local decision makers varied from one study area to another. For the issue of child malnutrition, a doctor at an NGO run clinic stated they would provide nutritional supplements to the children of the particular study village: “We cannot address the issue on a wide scale. However, we will try our best to provide the nutritional supplement to the children through the Angwanwadi workers” (local decision maker 8, doctor of a NGO run health facility of a deltaic study village). As a solution to the tube well scarcity, Panchayat members in one village agreed to allocate some budget towards increasing the number of tube wells in the village: “The mothers have raised an important issue. I am glad that they have taken the picture of the issue of tube well scarcity of the village. I will try my best to extend my support in this regard” (local decision maker 9, Panchayat member of a study village).

Frontline health workers such as ANMs and Accredited Social Health Activists (ASHA) also expressed their support by promising to generate awareness among the mothers-in-laws by counselling them separately on hygienic practices and child care.

Local decision makers were unanimous that the community needed to continue photovoice processes at different levels to create greater impact and generate awareness among others for more sustainable action. According to them, presenting photographs provided evidence of the actual situation that the respondents wanted to communicate. They added that organizing similar interface meetings at higher levels would enable district and state level decision makers to better understand community issues. Panchayat members agreed to take the discussion forward with the photovoice mothers in their scheduled monthly meetings. At the same time, local decision makers stated that the interfaces should be taken to the village level, so that the rest of the community members could be motivated by seeing the photographs into communicating their challenges in the same way.

Some decision makers expressed interest in undertaking a similar kind of exercise to express their own perspectives on child health. Local decision makers stated that their perceptions should be compared with the perception of the community “We may take similar pictures but our interpretation would be different” (local decision maker 76, informal healthcare provider of a study village).

Women’s reflections on photovoice

For most mothers, the photovoice project was an experience that boosted their self-confidence. In the course of the project, they went from being hesitant about speaking to voicing their perceptions with clarity and conviction. A few of the initial concerns common to all participants were: feelings of awkwardness in handling an electronic device for the first time; keeping a valuable from an outsider for days; a sense that taking photographs is a man’s job; concern about what would happen if they could not fulfil the project’s goal; feeling inferior for being illiterate; and being unsure whether the results could be communicated to the target audience.

Nevertheless there was more photographs from the educated voices belonging to the upper layers of society, which was dominated by the general caste women, compared to illiterate and primary educated women from lower castes (i.e. SC and ST). Examining the number of photos taken against the livelihoods of the participants showed that mothers who had their own agricultural holdings and housewives were able to commit more time in taking photographs compared to fisherwomen, crab collectors and daily labourers, who had strenuous livelihoods. We also noted variation in which determinants were captured in the photographs according to participants’ livelihood options and educational status. Housewives, agriculturists and daily labourers photographed water and sanitation issues more often than mothers in other occupations. Crab collectors and fisherwomen gave more stress on livelihood options and embankments respectively (Fig. 7). Illiterate participants focused more on hazardous livelihoods (Fig. 8), while participants with primary and secondary education prioritized water and sanitation issues. Poor access to health services was discussed most by participants with secondary education, although the issue was also captured by the others.