From Clicks to the Bank: Malaysia’s Online Milk-Sharing Lessons for Inclusive Global Policies on Human Milk Donation

Community-Led Milk Sharing as a Cultural Entry Point to Human Milk Donation

Donor human milk is vital in supporting the health and survival of preterm and medically fragile infants. Despite its proven benefits and the global expansion of human milk banks, many countries face persistent challenges concerning the encouragement of public participation in formal human milk donation programmes. Despite the well-documented benefits of breastmilk donation, low donation rates are common in many countries due to various factors that might occur in combination, including a lack of awareness (Kullmann et al., 2022), cultural and religious concerns (Bressler et al., 2020; Ramachandran et al., 2024). The development of a religion-compliant human milk banking in Muslim-majority countries marked a significant milestone in aligning public health goals with Islamic principles (Gribble et al., 2025). However, engagement with this formal system remains limited. Meanwhile, informal milk sharing facilitated through online breastfeeding communities has emerged as a widespread, community-driven practice (Coutsoudis et al., 2026). Insights from these existing milk-sharing networks can offer valuable lessons to enhance public awareness of, participation in, and acceptance of human milk donation initiatives.

Malaysia is a multicultural country with diverse religious and cultural perspectives that shape its social, cultural, and healthcare landscape (Department of Statistics Malaysia [DOSM], 2023). The three major ethnic groups are Malays (who form the majority and are predominantly Muslim), Chinese (who mainly practise Buddhism), and Indians (who primarily follow Hinduism). Additionally, indigenous communities such as the Orang Asli live in Peninsular Malaysia, while various ethnic groups live in East Malaysia. This rich diversity influences many aspects of life, including dietary practices, healthcare decisions, and perceptions of medical interventions such as human milk donation (Azman et al., 2024; Dewi Hestiani et al., 2023; Jamil et al., 2021). For instance, Islamic principles are instrumental in shaping public acceptance of human banks among the Muslim majority, particularly regarding milk kinship laws (Naseer et al., 2025). Meanwhile, non-Muslim communities may have different perspectives and cultural considerations in relation to human milk donation and sharing (Mathias et al., 2023). In a multicultural society where communities coexist and share social spaces, exposure to different cultural norms and religious beliefs can shape attitudes to breastfeeding, milk sharing, and human milk donation (Jamil et al., 2025).

Studying Informal Milk Sharing in Digital Breastfeeding Communities

In this study, a qualitative design was employed to explore online milk-sharing practices among Malaysian mothers. A purposive sampling strategy was used to recruit 30 participants who were actively involved in Facebook-based breastfeeding communities as milk donors, recipients, or both. Participants were recruited through targeted posts in selected Facebook groups, followed by eligibility screening. The study focused on Facebook-based groups where mothers engage in peer support, breastfeeding education, and milk-sharing activities. These communities operate outside formal healthcare systems and are characterised by self-regulation, peer trust, and voluntary participation.

Participants were eligible if they were Malaysian mothers aged 18 years or older, were actively involved in online breastfeeding or milk-sharing communities, and had experience as a donor, recipient, or both. Recruitment was conducted through targeted posts in selected Facebook groups, followed by direct communication to confirm participant eligibility. Participation was voluntary, and informed consent was obtained prior to data collection.

Trust, Self-Regulation, and Safety in Informal Milk-Sharing Practices

The eligibility criteria reflect naturally occurring community practices rather than clinical donor screening standards. Donor mothers commonly described having a perceived surplus of expressed breast milk after meeting their own infant’s feeding needs. Informal indicators of infant adequacy—such as perceived sufficient milk supply, infant satiety, routine attendance at child health clinics, or general statements that the infant was “growing well” —were shared during peer interactions. However, no objective assessment of infant weight gain, growth trajectory, or exclusive breastfeeding adequacy was conducted or verified during this study.

Health-related eligibility was based on self-reported disclosures made within the community. Donor mothers voluntarily shared information regarding general health status, medication use, dietary practices, recent illnesses, or lifestyle factors through posts, comments, or private messages. No formal mechanism required donors to report new medical conditions or the initiation of medications that may be contraindicated during breastfeeding after an initial milk-sharing agreement. Any health status updates occurred informally through ongoing peer communication, and these were neither standardised nor clinically verified. These practices reflect the trust-based, self-regulated nature of informal milk-sharing communities and differ fundamentally from regulated human milk bank systems.

Transportation of donated breast milk was neither coordinated nor supported by the community as an institution. Instead, logistical arrangements were managed directly between donor and recipient mothers through private communication. Common approaches included in-person handover, the use of commercial courier services, or delivery via family members or trusted intermediaries. Community administrators did not oversee or standardise transportation processes; however, informal peer guidance based on experiential knowledge of expressed breast milk storage, packaging, and transport was occasionally shared. These arrangements were not monitored or verified.

Data collection comprised two phases: (1) content analysis of publicly shared posts within two breastfeeding and two milk-sharing groups, and (2) in-depth semi-structured interviews conducted online using video conferencing platforms. The sample size of 30 participants is consistent with qualitative research focused on exploring experiences, meanings, and practices rather than estimating prevalence. Data collection continued until thematic saturation was achieved, at which point no new concepts or patterns emerged from the data. Informed consent was obtained from all the participants prior to data collection. Ethical approval was granted by the Ethics Committee for Research Involving Human Subjects, University Putra Malaysia (JKEUPM 2019-283) and administrators of the breastfeeding and milk-sharing groups.

The sample predominantly comprised 28 Malay Muslim women, alongside one Chinese Christian woman and one Indian Hindu woman, reflecting the demographic profile of active participants in online breastfeeding communities in Malaysia. This represents a limitation in terms of broader cultural representation. The perspectives of women from other ethnic and religious backgrounds may differ, and they were underrepresented in this study. Therefore, future research should aim to include more diverse demographic groups to enhance the transferability and cultural inclusivity of their findings.

Trustworthiness was enhanced through methodological triangulation, combining content analysis of online community posts with in-depth interviews. Prolonged engagement with online breastfeeding communities enabled contextual understanding of milk-sharing practices. An iterative analytic process was employed, with ongoing comparison across data sources to refine themes. Reflexivity was maintained throughout the study to acknowledge the researchers’ positionality and to minimise interpretive bias.

The current paper highlights key practices that could inform more culturally appropriate and socially accepted approaches to promoting human milk donation in Malaysia and worldwide. The aim is to bridge the gap between community-led efforts and formal healthcare infrastructure by offering practical policy and practice recommendations.

Digital Practices That Sustain Milk Sharing: Moderation, Hashtags, and Peer Education

Drawing on narratives shared by 30 Malaysian mothers active in Facebook-based breastfeeding and milk-sharing groups, several recurring practices and dynamics were identified. These online breastfeeding communities not only support mothers during their breastfeeding journeys but also shape cultural understanding, religious navigation, and trust-building through milk-sharing. These communities represent valuable platforms for raising public awareness of human milk banks and facilitating discussions on human milk donation.

The communities offer a space in which individuals can seek reliable information, share personal experiences, and connect with others interested in milk-sharing. Through these discussions, members often become more aware of the existence, benefits, and ethical considerations of human milk banks. As a result, the information shared within these communities may increase public awareness and inspire other mothers to consider transitioning from informal milk-sharing to formal human milk donation through regulated human milk banks.

The fieldwork conducted for this study revealed multiple ways in which Malaysian mothers use online communities to access and share breastmilk. The milk-sharing process would be initiated in one of four ways: using a milk-sharing database, uploading one’s own post, referring to existing posts, or seeking help from the administrators of the online breastfeeding communities.

These communities are pivotal in shaping the trust and willingness of mothers to participate in formal human milk donation programmes, including those managed by human milk banks. The communities are built on shared values, experiences, and support, all of which contribute to a strong sense of communal trust.

The group administrators create and manage these communities, moderate discussions, and ensure that interactions remain respectful, informative, and supportive. Through their consistent engagement and credibility within the community, these individuals often become trusted sources of guidance and reassurance. In the context of promoting human milk donation to human milk banks, the administrators play crucial roles in demystifying the process, addressing misconceptions, and promoting understanding. As gatekeepers of information, they can actively share accurate details about human milk bank procedures, eligibility criteria, and religious or ethical considerations. Their actions include sharing testimonials from successful donor mothers, clarifying eligibility criteria, and explaining procedures like health screenings and storage requirements. This peer-led guidance helps reduce apprehension and correct misconceptions, thus encouraging more mothers to consider donating to formal, regulated systems.

Administrators also assume moderating roles, ensuring that discussions remain respectful, factually accurate, and aligned with public health standards. In some cases, they might collaborate with healthcare professionals to host live Q&A sessions, distribute official resources, or assist in coordinating donation drives. This creates a bridge between informal milk-sharing cultures and institutional human milk banking systems, enabling mothers to make a smoother transition from peer-to-peer donation to regulated human milk donation via a human milk bank. By embedding trust-building mechanisms and peer moderation into their daily interactions, these online communities serve as critical grassroots partners in expanding the reach and acceptance of human milk bank programmes.

Personalisation, Empathy, and Religious Navigation in Milk Exchange

Within milk-sharing networks, hashtags such as #milkdonation, #ibususuan [milk mother], #anaksusuan [milk child], and #requestbreastmilk serve as powerful tools for organising content, enhancing discoverability, and fostering a sense of shared purpose. These hashtags allow users to quickly identify relevant requests or offers of expressed breast milk (EBM), making the milk-sharing process more efficient and responsive.

One key lesson for human milk banks is the effectiveness of targeted messaging, with hashtags observed to cluster around personal stories, often accompanied by photos of infants, urgent appeals, or testimonials. Tapping into emotional connections in this way significantly increases visibility and user engagement. These elements humanise the act of human milk donation by embedding trust-building practices into the everyday operations of online milk-sharing communities. Rather than functioning merely as communication tools, these shared narratives, hashtags, and peer interactions operate as informal yet structured mechanisms that guide participation, reinforce shared values, and regulate expectations within the community. In this way, trust is cultivated organically through consistent peer engagement, shared experiences, and mutual accountability. Insights from these embedded community practices could inform how formal human milk banks might develop trust-building strategies within their own standard operating procedures, particularly by integrating culturally resonant communication and community-driven engagement approaches.

Additionally, encouraging donor mothers to share their journeys can serve as authentic advocacy that normalises participation in human milk banks. Furthermore, social media campaigns promoting human milk banks can integrate emotionally compelling visuals and narratives, echoing the grassroots communication styles that have already proven effective in these communities. Such campaigns could showcase stories of preterm infants who benefited from donor milk, interviews with donor mothers, or behind-the-scenes insights into the milk screening and processing procedures, thereby building both trust and public interest.

In milk-sharing communities, mothers requesting donor milk often provide detailed information about their infant’s condition, such as the age, birth weight, health status (e.g., preterm birth), or specific feeding requirements (e.g., allergies or G6PD deficiency). These recipient-specific details not only help potential donors assess compatibility and readiness to donate but also encourage more informed and empathetic engagement. Donor mothers often respond to requests that resonate with their own birth or breastfeeding experiences, such as having delivered a preterm infant or managed dietary restrictions. This practice offers valuable lessons for human milk bank systems, especially those aiming to improve transparency, responsiveness, and personalisation in donor milk allocation.

While human milk banks must adhere to rigorous screening, processing, and anonymisation standards to ensure safety and fairness, these platforms can still integrate customisation strategies inspired by grassroots milk-sharing. For instance, human milk banks can improve communication with healthcare providers and caregivers by incorporating structured referral forms that include detailed information about a recipient infant’s medical needs. This would allow human milk bank staff to prioritise and match donations more effectively, such as by reserving milk from early lactation for preterm or critically ill infants or, if the recipient infant has sensitivities, excluding milk from donors who consume allergens.

Moreover, recipient-specific narratives can play a role in public advocacy. Stories of families whose babies thrived on donor milk due to specific health conditions can foster the public perception that human milk banks are life-saving institutions, not just milk distribution centres. Another important takeaway is that donor motivation can be enhanced through clarity regarding the beneficiary of their gift. While anonymity must be preserved in regulated systems, human milk banks could explore anonymous feedback loops such as general updates about how many infants benefited from a donation, which would provide donors with emotional fulfilment and a sense of purpose. Integrating these values into human milk bank operations would highlight the importance of personalisation, transparency, and empathy in human milk donation systems. It would also foster greater donor participation, strengthen public trust, and optimise the impact of donor milk in neonatal care.

In this study, the discussions around milk kinship were found to be deeply embedded into the social fabric of milk exchange. Milk kinship refers to the Islamic concept that milk-sharing creates familial bonds. Mothers frequently turn to fellow group members, respected community leaders, or religious scholars to clarify the permissibility of milk-sharing, the required conditions for establishing milk kinship, and the need for proper documentation and consent. These religious inquiries are not addressed in isolation but are naturally woven into the everyday decision-making of mothers navigating the complexities of infant feeding. This integration of religious guidelines into milk-sharing practices reveals important lessons about the effective design and operation of formal human milk banks, especially in settings where religious sensitivities are paramount. Therefore, human milk banks must incorporate religion-compliant practices into areas like acquiring consent, keeping records of donor–recipient relationships, and transparent communication about whether milk kinship has been established. For example, human milk banks could introduce opt-in systems whereby donor and recipient families are informed about milk kinship implications, while documentation would be securely maintained for future reference to avoid future marriage among milk siblings.

The presence of credible religious authorities on advisory boards could significantly enhance legitimacy of the human milk bank. These parties could publicly endorse human milk banks, alleviating community fears and promoting alignment with religious values. Educational materials explaining the human milk bank process from both a medical and a religious perspective could bridge the gap between public health and religious practice. Human milk banks could collaborate with online support groups to disseminate religiously framed FAQs, host webinars with religious scholars, or co-create infographics that explain milk kinship in accessible terms. This approach would not only increase acceptance among Muslim families but also establish a model for inclusive health services that acknowledge the diversity of beliefs in multicultural societies.

In milk-sharing communities, mothers actively engage in informal peer education by exchanging practical information about donor screening and EBM hygiene, storage, and transportation. These discussions reflect a deep collective concern for safety, ethics, and responsibility. Common topics include disclosures of health status, medication use, diet, pumping hygiene, storage duration, freezing protocols, and delivery coordination. Mothers often supplement these discussions with personal experiences, tips, and visual aids, thus creating an evolving, user-generated repository of handling human milk. These actions offer several valuable lessons for human milk banks, particularly in the contexts of public education, community engagement, and donor preparedness. This highlights how potential donors and recipients need to be empowered with accessible, clear, and culturally relevant educational materials.

Human milk banks can learn from the approaches followed within these communities by designing peer-informed resources such as FAQs, videos, infographics, and downloadable guides. These materials could not only explain medical criteria such as blood tests and lifestyle eligibility but also offer practical guidance on milk expression, as well as EBM handling and transportation. Additionally, training programmes for the administrators of online breastfeeding communities could be developed in collaboration with human milk banks to strengthen education on human milk donation. These administrators could act as ambassadors, helping translate institutional policy into relatable content and liaising between human milk banks and local communities.

One of the most striking features of online breastfeeding communities in Malaysia is their inclusive and cross-cultural composition. Muslim members often lead discussions about milk kinship, while mothers from diverse ethnicities, faiths, and cultural backgrounds actively participate in these communities. These discussions often attract non-Muslim members, who not only learn about the concept of milk kinship but also contribute to the conversation. In some instances, non-Muslim mothers themselves raise questions about milk kinship, reflecting growing awareness, curiosity, and mutual engagement across religious lines.

This multiculturalism offers important lessons for the development and promotion of human milk banks in Malaysia, emphasising the importance of cultural sensitivity and multilingual communication. Human milk banks can enhance inclusivity by providing educational materials, consent forms, and public messaging in multiple local languages, which would ensure that mothers from all backgrounds feel acknowledged and respected. The open exchange of cultural norms and beliefs within these peer groups highlights a natural curiosity and willingness among the members to understand differing perspectives on infant feeding, donation ethics, and family structure. Human milk banks can tap into this intercultural dialogue by organising community engagement sessions or forums to which diverse voices could be invited to share experiences and expectations about human milk donation. This might reveal cultural considerations that might otherwise be overlooked in a medically driven system.

Translating Community Practices into Human Milk Bank Policy and Practice

The practices observed within Malaysia’s online breastfeeding and milk-sharing communities demonstrate how trust, cultural sensitivity, and peer-led governance can be organically embedded into infant feeding support systems. Although these communities operate outside formal healthcare structures, the mechanisms that sustain participation—such as peer moderation, transparent communication, religious guidance, and culturally resonant storytelling—offer valuable insights that could strengthen formal human milk bank programmes. Translating these community-driven practices into policy and practice does not require the replication of informal milk sharing, but rather the adaptation of its relational and cultural strengths within regulated frameworks. By aligning institutional procedures with the lived values and concerns of mothers, human milk banks could enhance public trust, donor engagement, and cultural acceptability while maintaining clinical safety and ethical governance.

Despite the limited sample size used in this study, the findings offer valuable policy and practice insights into the function of trust, self-regulation, and peer support within online milk-sharing communities. These insights are conceptually transferable and could inform the design of engagement and governance strategies for formal human milk donation systems.