Exploring Digital Tools for Donor Mothers: Understanding Human Milk Donation & Milk Banking Challenges

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Exploring Digital Tools for Donor Mothers:

Understanding Human Milk Donation & Milk Banking Challenges

Kristelle Jose

Interaction Design One-Year Master 15 credits Spring 2020 Supervisor: Dario Salvi

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Abstract

Premature newborns’ medical need for donor human milk surpasses the supply and the demand for it continues to increase. Lactating mothers with a surplus can help fill the gap and give fragile infants a better chance to grow by donating breast milk. This thesis project examines challenges in the human milk donation process and observes general milk donation operations. It seeks to answer what kind of tools and support are needed to streamline the human milk donation process for lactating mothers who voluntarily donate their extra milk supply. Looking closely at information and communication technologies, the project notes design implications for the development of donor-supported digital tools. Through a user-centered design approach, qualitative interview strategies, and feedback from a milk bank, mockups of a digital waiting room were created to provide informational and social support for donor mothers.

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1. Glossary & Abbreviations

CRM – Customer Relationship Management; any kind of software system that manages data and retention donor – (shortened) for milk donor EMBA – European Milk Bank Association GDPR – General Data Protection Regulation HM – human milk; breast milk to feed an infant HMH4B – Human Milk 4 Human Babies (Facebook Global Group) HMBANA – Human Milk Bank Association of North America ICT – information and communication technologies milk donation – donation of human milk for infantile development milk banking – milk donation through a milk bank, formal milk sharing – peer-to-peer milk sharing, informal; milk exchanged without milk bank as a mediator Mother’s Milk Bank – MMB NICU – neonatal intensive care unit UCD – user centered design

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2. Introduction

Breastfeeding is widely known to be beneficial for newborns and for overall infant growth and development. Breast milk contains essential proteins, fats, and vitamins that cannot be cloned or duplicated (Declercq et al., 2014). Premature infants in particular are in most need of breast milk, yet their mothers are least likely to be able to provide milk in the earliest days of life. Among other obstacles, stressors from birth can drastically reduce milk production which makes breastfeeding not always possible. Therefore, lactating mothers with surplus milk can help fill the gap and give fragile infants a better chance to thrive by donating breast milk. Available research also shows that premature infants who receive donated human milk (HM) compared to formula have lower incidences of severe gut disorders and other serious infections thus, shortening the number of days in the neonatal intensive care units (NICU) in hospitals after birth (Boyd et al., 2007). It is imperative to note that donated HM is not a substance freely distributed, but rather prescribed only to premature infants by hospitals. Knowing this, one can wonder how do hospitals obtain HM and where is its point of origin? Enter donor milk. In short, human milk banks conduct essential services to obtain HM. Milk banks enlist volunteer HM donors, specifically lactating mothers, and collect donated breast milk. They pasteurize, screen, and store donated milk. Thereafter, they distribute donated HM to hospitals in order of priority or in some cases, use a lottery system if supplies are limited. Hospitals then use donated HM to feed premature infants (Arnold, 2010). Similarly, former and alternative practices include wet nursing and milk banking. A Brief Review of Wet Nursing, Breast Pumps & Milk Banks Wet nursing refers to a mother who breast feeds a child other than her own. In some cultures a wet nurse is linked to a family by a special kind of relationship or involves monetary exchange. With the advancement of mechanical devices, extracting breast milk via a breast pump allows infants to consume milk at a later time and stimulate lactation for the mother. Along with artificial cooling from freezers, breast milk can be stored for longer periods. Lactating mothers who are willing to donate their breast milk can pump and directly hand off to families in need (also known as informal milk sharing) or send to milk banks (formal milk sharing). The first milk bank was established in Vienna, Austria in 1909 (Moro, 2018). As of this writing, there are 210 active banks in Europe guided by the European Milk Bank Association (EMBA) and the Human Milk Banking Association of North America (HMBANA), which oversees 29 milk banks in North America. The International Milk Banking Initiative provides education, programming, and quality control systems for the safe transferring of milk. Human milk banks around the world provide numerous services including donor selection and collection, screening, pasteurizing, storing, and distributing donated human milk to meet the needs for whom human milk is prescribed to by maternal health care practitioners (Moro, 2018). Nevertheless, milk banks face certain challenges. For example, short-staffed milk banks cannot process all requests in a timely manner which can cause delays in donating and processing (Cohen, 2007). They may also experience shortages in milk supply and find other ways to enlist HM donors to sustain milk levels. Among other issues, milk banks’ most significant problem is visibility (Cohen, 2007). They are not widely known as a community service compared to blood donation. A Donor & Breast Pumps Above all, milk banks rely on HM donors. HM donors are literal lifelines for milk banks and NICUs. Becoming a HM donor is contingent on numerous conditions. In order to be considered a HM donor,

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6 a lactating mother must meet the following main prerequisites: non-smoking, low consumption of alcohol, no use of medications including certain naturopathic or homeopathic supplements, no blood transfusions within the last six months, free from infections and diseases, and be breastfeeding for a child up to 12 months (Guidelines for the Use of Human Milk and Milk Handling in Sweden, 2016). In order to ensure a candidate donor’s health, she must undergo a serological blood test typically provided and conducted by milk banks and/or hospitals. Besides these requirements, a mother must also carve out time and have the means to pump, store, and deliver her milk, unless there are physical sites and clinics that specifically serve donors (as is the case in some countries like Brazil). If this is unavailable and a mother decides to voluntarily donate her breast milk, she has to continue to take certain actions. To summarize these actions, a brief sequence of events is provided in Table 1. Table 1. General overview of the milk donation process for a candidate donor. Step 1 Find local milk bank. Step 2 Pass a phone screening and complete intake forms. Step 3 Complete blood test. Step 4 Wait for approval and once approved, she is given sterile containers and labels. Step 5 Set aside time to pump, sterilize all equipment, and properly store milk. (Repeated multiple times per day). Step 6 After a certain number of ounces (typically 100 ounces), coordinate delivery of frozen milk to local milk bank. Furthermore, a mother donor may be motivated by other factors. She may be producing a surplus, more than what is needed for her baby or even encouraged by a nurse. Research suggests that donating milk is “ a positive, valuable, and nurturing experience (Candelaria et al., 2018).” In this same study, they identified certain themes: Ripple of Hope, Dynamic Interplay of Nurturance, Standing on the Shoulders of Others, and Sharing their Stories. The findings of the study further point to being able to “give back” and help other mothers in need. Similarly, another study indicates that a mother who donates milk is more motivated by stories of how her breast milk personally assisted other babies (Gribble, 2013). For these reasons, a donor mother relies on certain tools to enact various motivations. Even whilst breastfeeding and pumping breast milk, a mother has numerous options for milk expression and storage. Figure 1 illustrates instruments and tools for expressing breast milk. Figure 1. Assorted breast pumps (hospital grade, manual, electric, and wearable) and storage; tangible items for lactating mothers. Retrieved from Google Images.

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7 Donating breast milk requires a close evaluation of the interactions at play. The interaction begins with the lactating mother. With the aid of a device, she extracts milk and stores for later use. This can be classified as an embodied interaction with herself. The device can be seen as a means to an end. She may contemplate her milk supply and ponder donating it to a mother and infant in need. (The idea may also be introduced by a health professional or from other mothers.) A second scenario emerges where she connects to maternal health care practitioners or a milk bank to learn about practicalities and logistics for giving her extra milk. In this scenario, there becomes a possibility, an informational transaction, from milk bank to potential donor. Besides potential HM donors and milk bank organizations, other stakeholders in this subject matter include maternal care practitioners like lactation consultants, doulas, midwives, obstetricians, and nurses–all play integral roles in providing education and support for lactating mothers (Figure 2). Figure 2. Various stakeholders impacted by milk banking.

1.1 Research Area

This thesis project explores not-for-profit milk banking, formal HM donation through a milk bank, and the interaction between milk banks and HM donors. The target audience is lactating mothers who have voluntarily decided to donate their milk specifically to a milk bank and are beginning the screening process. It is imperative to acknowledge that not all mothers chose to breastfeed, pump, or donate milk. This project recognizes not all mothers breastfeed or intends to donate milk. This project also honors choice and its aim is to support lactating mothers who are willing to donate their extra milk supply, expressed or not yet expressed, and streamline the screening and donation process for candidate donors (Figure 3). Furthermore, it should be established that the project does not focus on a donor’s interaction with breast pump devices, but specifically her introduction and connection to a milk bank. Figure 3. Formal milk supply chain.

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8 Milk donation in general seems to be an empowering experience. Deciding to donate extra milk is a significant investment in time and energy in addition to the substance one donates. It is a generous decision and interaction design could potentially further support this altruistic behavior. Just by examining the behavior, one can discern the values of a HM donor. Some values might include kindness, helpfulness, loyalty to a group (other mothers), and waste avoidance of natural sources, and opportunities. For these reasons, one can wonder how might a lactating mother obtain information to enact her values? What are her expectations, if any? What challenges might she encounter after deciding to donate? How can interaction design shape or enhance the overall donation experience? Upon considerable online research, it quickly became obvious that how to donate milk is less clearly communicated and understood. Minimal logistical and practical information exists if not directly given by maternal health practitioners. This implies a situation in desperate need of evaluation. Since most individuals search the Internet for information, this proves to be an interesting area for a digital tool that provides accessible and understandable instructions for donors. Donors may also have other hidden or known concerns that could be addressed with some sort of digital tool. First, mothers of infants–a milk bank’s main audience–are limited in time. Time is a resource that may prevent them from doing in-depth research on this topic. Second, one can wonder why milk donation is not as widely known as other donation processes. Third, according to the American Academy of Pediatrics, the demand for HM is “rapidly surpassing the supply” (Miracle et al., 2011). Independently run milk banks are limited in funding to launch campaigns to reach their regional, target audience. In addition, the window of time to donate HM is short. Mothers who breastfeed their infants begin during peripartum period and continue to lactate for a period of time. Therefore, one could look more closely at information and communication technologies (ICTs) and digital tools to assist potential donors. Moreover, an online testimony reveals that the screening process may be strenuous for some mothers. A contributing writer at The Atlantic describes: The screening process to become a donor is extensive. Before I began trundling a cooler packed with vials of frozen breast milk through downtown Washington, D.C., I completed several phone interviews with the bank, submitted recommendations from my doctor and my baby’s doctors, took a blood test, and filled out a detailed questionnaire to screen for medical history, drug and alcohol use, diet choices, and so forth. Once the bank received my donated milk from the drop-off center in the city, they screened it for bacteria, pooled it with other donated milk, pasteurized it, and shipped it back out to hospitals. It’s often simpler, logistically, to get milk to a local parent in need than to ship it across the country. And there’s no complicated paperwork (Schreiber, 2017). The screening process generally takes 1-4 weeks depending on how quickly paperwork and phone screenings are completed (Cohen, 2007).

1.2 Research Question

Based on the information presented, this project seeks to ask:

How can the HM donation process be streamlined with the aid of a digital tool?

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9 Supporting sub question:

What kind of support (social, informational, technical) is needed for lactating mothers to

comprehend/actualize/materialize the milk banking process?

In this paper, a digital tool is a program, website or online resource that can make tasks easier to complete.

1.3 Expected Contribution

There are two posed contributions of this project: (1) identify apparent and hidden challenges in HM donation, (2) discovery of design opportunities to expedite screening processes, and/or make desired information more engaging, comprehendible, and accessible. Results of this project could potentially shed light on why some healthy lactating mothers are not aware of HM donation or choose not to donate aside from personal judgment. It could also identify hidden challenges of HM donation and discover opportunities for improving the screening and donation process. In addition, it could have greater contributions for families and milk banks. If milk donation were normalized, perhaps milk supplies would increase. If HM supplies increase, its reach could be extended to help families who are not able to obtain a prescription for it. For instance, mothers who have difficulty breastfeeding after normal delivery, mothers of twins, triplets, etc. whose milk production is not enough, mothers who are experiencing infection or are on medication, drug- or alcohol-addicted mothers, mothers with chronic diseases that hinder healthy breast milk production, mothers who have undergone mastectomies, adoptive families, and single fathers– all of whom are not prescribed HM, but could greatly benefit from it. Due to minimal supply, donated HM is currently only prescribed to premature infants (Arnold, 2010). Though there are other options and means to obtain nutritious milk, more than often than not those options are costly, and informal milk sharing in particular is not regulated. Imagine the healthy benefits more families would reap if milk banking where as common as, say, blood banking.

1.4 Ethical Concerns

This thesis project concerns verbal discussions on breastfeeding and human bodily fluid. Communication between participants and myself could potentially reveal personal information though I was careful to frame questions in such a way that does not harm, intervene, or disrupt the participants. In addition, I did not ask for or record personal data like name or age, or any biometric data (such as ounces of breast milk). All data collected was qualitative and solely focused on perspectives and attitudes. All responses were given voluntarily and each participant received a consent letter (see Appendix 1). To ensure confidentiality, all subject matters were handled according to General Data Protection Regulation (GDPR) guidelines and I consulted the Ethical Review Committee during the early stages of the project. All information was kept securely on my personal hard drive and cited participants have been anonymized to protect their privacy unless stated otherwise.

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3. Background

This chapter provides a theoretical framework for the design project. It will lay the foundation for HM donation that will later be used to evaluate the project’s main results. Following subsections give overviews of current practices and existing digital tools.

2.1 Theory

This work is motivated by social justice-oriented interaction design. Dombrowski et al. write, “Design is inherently about change – not just in the creation of new material artifacts, but in the ways that new technological objects afford new practices, social habits, and ways of living and interacting (Dombrowski et al., 2016).” They further describe a social justice approach as an “orientation to design – rather than a specific technique or method.” This orientation, designing for enablement, allows designers to closely examine individual experience, benefits, burdens, obligations, power, opportunity, and privilege. Dombrowski et al.’s article highlights several strategies and commitments to social justice-oriented design. One befitting this project is designing for enablement that is described as “designing for facilitating and developing opportunities for people to fulfill their potential and to develop their own capacity.” This can be interpreted as creating conditions of opportunity. With this in mind, this orientation allows us to examine motherhood and technology more closely and see how a digital tool might create conditions of opportunity. HM milk donors are typically lactating mothers of one child and often use their smart phones for hour-to-hour activities. Smart phones can be operated with one hand, and this in itself is a great advantage because it allows mothers to hold infants at the same time, possibly during breastfeeding. Smart phones are typically used for record keeping, information sharing, memory making, among other uses. For newborns, caretakers often note schedules of feedings, naps, etc. on their smart phones to share with other caretakers to identify the newborn’s patterns and begin to develop a schedule. By and large, smart phones have a big impact for mothers and hold significant meaning in their lives and roles. Gibson and Hanson note that smart phones are seen as lifelines in which mothers can communicate, share, find information, and take a break. They report, “In the U.S. 54% of mothers own a smartphone which is similar to the UK which reports over 50% of mothers own a smart phone (Gibson & Hanson, 2013).” The Internet is convenient, always available, and no appointments need to be made. If mothers seek advice or are breaking into a new online community, they will often turn to Facebook groups. The same article noted that when mothers feel uncomfortable asking peers or close family members for advice they check the Internet for “silly” things. Given these data points, one can see the steady connection mothers have to smart phones. To meet mothers metaphorically speaking, means to reach them through their smart phone. Finally, in thinking about how technology serves mothers, Gibson and Hanson claim “…digital interactions are already embedded into the social role and lives of mothers.” They continue to write, “The availability and pervasiveness of technology today has the potential to further reconstruct a person's approach to motherhood.” Not only do mothers rely on digital tools and smart phones, but their use of smart phones shapes the way mothers parent, which makes digital interaction designs even more influential and the stakes high.

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2.2 Related Work

A comprehensive review of related work on this subject is provided below. The digital tools described were found at various stages of development. 2.2.1 Human Milk Sharing Practices: Informal Versus Formal When a mother decides to be a milk donor, she has several options: she can informally share (peer-to-peer) or formally donate through a milk bank (Gribble, 2013). What follows are two examples, one formal and one informal. The formal example briefly reviews Brazil’s public health infrastructure and serves as a model in this subject area, and the informal example, milk sharing groups on Facebook, is selected to demonstrate the convenience and mindset of informal milk sharers. Brazil is currently the world leader in milk banking with 217 milk banks and 126 milk collection sites (Guitierrez, 1998). In fact, the milk banks serve as lactation centers where mothers and infants are directly referred to after being discharged from the hospital. Lactation centers offer support and coaching for milk expression. In addition, Brazil has a national online portal called RedeBLH which facilitates data collection and informs the public via electronic newsletters with updates and studies (Petherick, n.d.). Brazilian nurses can make home visits to collect extra milk removing the onus on the donor mother to sanitize, store, and deliver milk (Investing in the Future with Brazil’s Breast Milk Banks | UNICEF, 2013). On the other hand, Facebook groups like Human Milk 4 Human Babies (HM4HB) Global Network connect mothers to give or receive milk based on location. Each country, state, and county has a local Facebook chapter where one can express a need or post information on extra milk. For example, if a traveling mother has extra milk and is soon departing, she can write a quick health status, note where she is, and how much milk is available. A post could read, “No alcohol, no meds, 10 ounces and leaving tomorrow. Milk will be left at hotel reception.” It should be noted that HM4HB Global Network and all its chapters encourage making informed choices. They share strict guidelines for closed groups and mothers may ask for milk for healthy babies as well. They expect honesty and “Full disclosure on the part of all parties involved. The principles of informed choice are of the utmost importance in the context of peer-to-peer milk sharing” (Human Milk 4 Human Babies Global Network, n.d.). This example is mentioned to show the reasons why a donor mother might bypass a milk bank and demonstrate the ease of informal milk sharing. However informal milk sharing is not regulated. The donor is not screened nor has the milk been tested to verify the donor mother’s health. One can see the convenience and not wanting to waste the liquid resource by being a part of Facebook groups like HM4HB. 2.2.2 Websites For Formal Milk Banking Several websites should be highlighted for the information they present and to acknowledge notable organizations in this subject area. Human Milk Banking Association of North America (HMBANA) and European Milk Bank Association (EMBA) are two non-profit organizations that promote milk banking in North America and Europe. They encourage cooperation between milk banks in their respective continents (About EMBA | EMBA, n.d.). The two organizations provide detailed information and guidelines for milk banks; however, they do not list actual locations or contact information for local milk banks. For instance, say an interested donor lived in Sweden or Spain and looked for the nearest milk bank, neither list addresses nor contact information for local the milk banks. If donors land on their websites, they would not be able to find information on their local milk bank though they claim each country or state has a certain amount of milk banks (see Figure 4). Instead, a person finds donor guidelines and PDFs on pumping instructions (see Appendix 2) which is still useful information, but does not guide a donor mother to practicalities and logistics of milk donation.

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12 Figure 4. Map indicating how many milk banks are in northern Europe. Retrieved from EMBA website. As mentioned before, finding a local milk bank can be a challenge in itself. If one were to view these websites, one might be deterred by the distance of a local chapter if a milk bank does not exist in their area. Additionally, what is not mentioned is that some donors have the option to send or request a pick up, free of charge, to donate HM, which is the case in Sweden. In Scandinavian countries, each NICU collects their own milk and milk banks are embedded within the hospitals. It is a national public health policy and service covered by their national health insurance plan. Contrastingly, in the U.S. no public health policy specifically supports donor milk banking. As a result, mothers explore alternative ways of giving like informal milk sharing (Palmquist & Doehler, 2016). Milk banks in the U.S. operate as non-profit organizations and are contacted by NICUs to receive pasteurized milk. Furthermore, three milk bank websites in the U.S. provide more detailed overviews of the milk donation process. Themilkbank.org, milkbank.org, and donatemilk.org summarize the donation process and describe who may or may not be eligible. Figure 5 provides sample content from various milk bank websites.

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13 Figure 5. Example content from milk bank websites that provide information. These examples are worth noting as informational guides to aspire towards for donor communications. They list logistical information as well as direct steps to begin screening. However, even high performing and transparent milk banks may find other digital tools complimentary and supplemental to their current operations. Resources for approved donors still lack direct ways of communicating with milk banks. Through websites and email, donors receive news and notifications at different stages of the screening process and as their milk is received and processed. However, even after approval and lactating mothers begin rhythms of expressing and storing, milk banks could observe the health status of donors and check in regularly. 2.2.3. Milk Matters, A Mobile Application Tool This mobile application was developed with input from a non-profit organization, Milk Matters. The designers behind the project looked closely at ICTs and whether or not they contribute to increased or sustained donation. They note that ICTs are designed to provide pre- and postnatal support, social connection, and information for mothers, hence creating an application for milk donation (Wardle et al., 2018). They also focused their research on donors’ motivations and note in the first phase of their project they learned, “…that donors are motivated by a sense of altruism and positive feedback, but struggle with some logistical aspects of donating milk,” which was addressed with a Depot Locator feature (third screen of Figure 6).

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14 Main Features of Milk Matters: • Short quiz to verify eligibility • Donors use maps to find drop off sites • Milk bank can share news, events, and educational topics • Feedback for donor showing recipient facts, a brief statement of how HM helped other mothers and infants 1 2 3 4 5 Figure 6. Milk Matters frames. Retrieved from article. This work is particularly relevant for the methods used to explore needs and requirements for their application. Alongside input from the non-profit, designers used probes and co-design workshop activities to understand nursing mothers’ hour-to-hour activities, opinions, and feelings. A cultural probe package, post card activities, and surveys were used to brainstorm and rank features of the application. They note: In this brainstorming session, the mothers were prompted to share what they would require of such an application; what would be valuable and useful or not be appropriate in such an application; what would motivate them to donate; would improve their experiences as breast milk donors; and would improve their interactions with Milk Matters (Wardle et al., 2018). Their methods yielded qualitative data and led them to prioritize certain features over others. This allowed them to tailor the application for the specific needs of donors; however, one feature is cause for concern. Wardle et al. emphasize that each mother produces milk at her own pace and should not be worried about quantity expressed yet designers included a graph where the x axis is a timeline and y is the amount donated (second screen of Figure 6). This feature visualizes amount of milk donated, which may cause a donor to doubt the amount of milk she is expressing. In general, the application offers numerous advantageous features, but it lacks the ability for the milk bank to directly communicate with donors nor does it include functions for the screening process. It addresses steps and activities after approval and during milk donation. Digital tools for the screening process, the critical step before approval, remains overlooked.

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15 2.2.4 BBy Network, “Nurture the Future” Figure 7. BBy screen images from application store. A physician-created mobile application that connects lactating mothers and new parents to buy and sell breast milk. The application has two audiences, donors and recipients. Through a series of questions from both donors and recipients, it connects users based on zip code and specific needs (Figure 7). Examples of specific needs are ounces of breast milk needed for say a newborn versus an eight months old infant. Users must create and account, submit a request and are “matched” based on needs and availability. Once matched, you can message the other person to coordinate pick up or delivery of breast milk. Though BBy claims their exchange is safe and secure with their testing process, the obvious flaw is that the application is for-profit and donors are paid for every ounce they express. The site claims the donor receives 80% of all sales. Presently, it is also only available in New York, Chicago, and recently San Francisco. The selected cities suggest their target audiences are affluent. By the same token, one could argue that this application may remove the incentive for mothers to express milk for her own infant. 2.2.5 Social and Mobile Interaction Design for Young Blood Donors In a like manner, hospitals keep a steady supply of donated blood for blood transfusions. A blood bank, or collection enter, typically refers to a division of a hospital where blood is collected, screened, and stored (Blood Banking and Donation, n.d.). In comparison to milk donation, blood is not self-expended by the donor nor is it something shared formally or informally. Milk donors are a smaller pool of people; only lactating women who produce healthy breast milk can donate. In 2013, Foth et al. conducted an empirical interactive design study with Australian Red Cross Blood Service to develop interactive prototypes for personal service (like scheduling), social media (to share the donation experience with other friends to raise awareness), and data visualizations (for local blood inventory levels). See Figure 8.

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16 Figure 8. Digital Prototype showing various functions. Retrieved from article. Designers in this study created a digitized membership card that includes details so that no forms had to be filled out to book an appointment (Foth et al., 2013). They also included two notifications before the actual blood donation appointment to remind donors about nutrition and hydration before and after blood donation which sparked an idea that milk banks could similarly check in with donors for their health status during lactation and donation period. Overall, this body of work is recognized for its interactive, digital prototypes and design implications that could be useful in this thesis project. They referenced key elements that encourage blood donors which is summarized in Table 2 (Ringwald et al., 2010). Highlighted areas are elements that I saw as potential applications to milk donation. Table 2. Ringwald’s guide for blood donor retention. Key elements: Communicate with blood donors right from the beginning Support the role of the blood donor’s identity Make blood donations convenient Motivate and educate blood donor staff Reduce/prevent adverse events and the blood donor’s anxiety Increase the satisfaction with the blood donation process Use appropriate incentives Ask temporarily deferred donors to return Use personal aspects to motivate blood donors Work on enhancing reputation of the blood donation service

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17 Altogether there is ample literature on milk sharing practices and ICTs for blood donation, but minimal development and evaluation of digital tools that specifically facilitate the donation of HM to milk banks. Many mothers may use Facebook for informal milk sharing, but again, these exchanges and the substance itself are not regulated. In short, there are still prevailing issues with available information and establishing a connection to a local milk bank to actualize formal milk donation.

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4. Methodology

This chapter describes user centered design (UCD) which is used as methodology for this thesis project. It also recounts specific methods used to understand HM milk sharing practices. Each section describes how and why chosen methods were applied. The following chapter, Chapter 5, further describes the actual design process in greater detail. UCD is generally described as understanding whom the design is for, what users want and need, and consideration for the environment in which the design is used (Pratt & Nunes, 2012). Pratt and Nunes continue to write: UCD is a design philosophy that puts the user of a product, application, or experience, at the center of the design process. In UC, a designer strives for a detailed understanding of the needs, wants, and limitations of the people who will use the end product and then makes design choices that incorporate this understanding. UCD requires that designers not only analyze and foresee how users engage with a product, but they also test their designs in the real world with actual users. To answer the research questions posed in this project, it was imperative to gain donor insights and test with actual users. I looked for potential donors’ attitudes and opinions and attempted to alleviate barriers to milk donation through ICTs. Testing would also include candidate donors, also known as usability testing within UCD. Usability testing was chosen because the technique, “…evaluate(d) a product by testing it with its intended users” (Pratt & Nunes, 2012). Pratt and Nunes write that the aim of usability testing is to watch real users test the design and discover any challenges they may encounter. This determines ways the overall experience could be improved. Because this project had a clear audience from the start, it was obvious to include them at various phases of the project. To provide a reference point, I followed a double diamond design process within this UCD mindset (Figure 9). Figure 9. Overview of double diamond process. During the Discover phase, I aimed to connect with several stakeholders including nursing mothers, maternal health care practitioners, and milk banks to understand milk banking challenges from different viewpoints. To gain intimate knowledge, understand behaviors and feelings, and if any, learn issues with digital tools and donating, I wanted to form a small focus group of 5-6 participants of nursing mothers and midwives. After gathering data, I would identify themes and place them into clusters to highlight obstacles and determine design opportunities. Thereafter, I would build a digital prototype that enhances the donation process. A digital prototype would be tested with the same focus group from the Discover

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19 phase or a new group, which ever was available. After user testing, I would make adjustments and reiterate based on feedback from users and stakeholders.

3.1 Literature Review

Desktop research related to interaction design, and maternal health and infant care was used to anchor this thesis project. Databases include Association for Computing Machinery, PubMed, and Journal of Medical Internet Research. Search terms include “lactation,” “e-maternity,” and “milk sharing.” To understand the current practices in this subject, I needed to evaluate existing literature and other bodies of work. After finding sources, each article was organized into a table to catalogue keywords and notes. Finally, references in key articles were further explored for other creditable and unique sources.

3.2 Netnography

To discern donor motives, predispositions, and lived experiences, netography was a chosen method for secondary research. Netnography is described as using “…social science methods to present a new approach to conducting ethical and thorough ethnographic research that combines archival and online communications work, with new forms of digital network data collection, analysis, and research representation” (Kozinets, 2015). I looked for online testimonies, interview recordings from milk bank websites, news articles, and motherhood blogs to gain insights for developing a digital tool (Figure 10). A few milk bank websites have video galleries and donor stories that highlighted challenges in milk banking. Figure 10. Examples of netnography that led to valuable insights.

3.3 Survey, Shared Journal & Questionnaire – E-Documents

Electronic documents were made to easily share with mothers in different locations. The intention behind these documents was to elicit responses that would reveal what type of assistance is needed for candidate donors. For example, general questions were posed to understand what lactating mothers know about the milk donation process and what issues–technical, ethical, and informational–they might anticipate. To achieve this, three electronic documents were made: a survey, shared journal, and questionnaire. Each document was shared with various participants, close friends and colleagues who are nursing mothers, and with mother groups. Survey created on Microsoft Word – a pretest for questions to gauge what lactating mothers know about milk banking. The goal was to share with first time and multiparous mothers at different stages of lactation to have a varied sample. Responses should have revealed how much mothers know about milk banking. For example, one question was “Have you heard of milk banking? If yes, how did you hear about it?” Another example question, “Suppose you had an extra supply of milk, would you donate why or why not?” Bear in mind, perhaps participants know little about milk sharing so this would reveal somewhat neutral opinions, but instead uncover additional values of mothers. The survey included a note at the end for recruiting a small focus group of nursing mothers. (See Appendix chapter for full survey.)

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20 Microsoft One Drive Shared Journal – To gain deeper insights, a shared journal was made for a group of 4-5 mothers. The journal included instructions and prompts to guide responses. One example of an entry was “When I think of donating my breast milk, I worry that…” The responses from the journal should have revealed intimate feelings about milk sharing. This method was adapted from digital diaries from Universal Methods of Design (Martin & Hanington, 2012). This time however, the journal included milk bank information, just a simple overview. The journal entries were anonymous though the group may have known each other– the anonymous responses allowed for more streams of consciousness statements and show likeness or differences in opinion. Participants could have written in at any time of day as they pleased and could have written brief or lengthy responses. A shared journal aimed to create a feeling of connectedness and allowed participants to build on what was mentioned. The goal was to create a shared, supportive space digitally, and to understand perceived challenges to milk banking. Online Questionnaire – If allowed access to certain Facebook groups, I wanted to share a simple and quick questionnaire for informal milk sharers. The purpose was to find reasons (and potentially validate findings from literature review) that show why donors shared informally as opposed to milk banking. The primary statement to complete was, “I donate milk informally as an alternative to milk banking because…” The final question asked for volunteers if any milk donors would be willing to start an email correspondence or participate in an online interview. Gaining approval from the Facebook group would be challenging as they are heavily monitored and do not allow links or promotion of any kind on their walls or community pages. (See Appendix chapter for all electronic documents.)

3.4 Expert Interviews

Interviews with current HM donors and lactating mothers provided valuable insights. From the motherhood blogs, I contacted authors to participate in a digital interview. Using Zoom, I conducted semi-structured interviews and obtained first hand statements and descriptions of their experiences donating milk (Martin & Hanington, 2012). Participants were mothers at different stages of lactation, either first time moms or multiparous mothers, and mothers who had heard about milk sharing and some who were unfamiliar. I assumed that having a varied sample would generate different angles to milk donation. Interviews with HM donors – Interviews with current HM donors were tailored to learn about their experiences. Guiding questions like, “How did you get started? Where or who did you hear about it from? When is an appropriate time for education on milk donation? During breastfeeding lessons or before birth? A month after birth? Did you have any challenges?” were asked. Through these responses, I learned how they committed to donating and what their challenges and high points were. Interviews with non-HM donors/candidate donors – Interviews with potential donors differed in that participants were given an overview of milk donation to inform them. Questions were centered on would they consider donating? Why or why not? The interview also included a short online exercise. For five minutes, a participant (with her permission) screen shared their browser to look for milk bank information and how to donate milk. In essence, they would pretend they would donate and look for information. The exercise focused on how a mother searches for information and what they absorb. This is referred to as “Think Aloud” during the online search and verbally describing what they are seeing and questioning (Pratt & Nunes, 2012). I observed during this time and was taken along the search.

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3.5 Method Considerations

I assumed that the different results from each of the methods mentioned above would compliment each other. For example, interview responses and survey results could validate findings from netnography. In addition, interviews with the online search exercise (and participants were encouraged to think out loud) gave deeper reflections. Perhaps this would give glimpses to their thought processes and ways of finding information. I expected the mothers to finding similar things and land on websites mentioned in related works. Thereafter, results and qualitative data from selected methods were thoroughly mapped and analyzed.

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5. Design Process

This chapter describes the actual design process. It gives a timeline and summary of different phases as well as critical milestones.

4.1 Process Structure

Figure 11. Converging and diverging points during the project. During the initial phases of the project, I encountered a few challenges that influenced the direction of the work. Due to the COVID-19 pandemic, methods shifted to digital activities and gathering a focus group was not possible. Planning the focus group was unfortunately met with the beginning of isolation, thus focus groups are not highlighted as a method for this project. If circumstances were different, I would have pursued this particular method further. Although I attempted to recreate focus group qualities with the shared journal, mothers of infants and children were at home 24/7 and were not able to participate let alone complete a survey, journal or questionnaire. All electronic documents were shared with nursing friends, nursing friends of friends, and mother groups in different countries. The first survey was sent to 10 mothers and only 3 responded. The questions could have been framed in a better way, but mothers expressed challenges to opening the survey on their phones. The questions in the survey were too general and interpreted as wanting information in the present versus what information is already known by the participant. (See Appendix 3.) The shared journal was emailed to five mothers and after one week it received no responses. The questionnaire was shared on a global Facebook group and only two people responded (see Appendix 4). With confidence, I can say that sending a survey or questionnaire to mothers during a pandemic was largely ineffective. It is equally important to note that each electronic documents were created as the project moved forward. It was not part of the original plan to send out three electronic documents, but when mothers did not respond to the survey the new strategy became a shared journal, and when the shared journal was disregarded I made a questionnaire and looked for other places to share like Facebook groups. The three electronic documents where created one after the other as a way to see if different versions or formats would yield responses. In order to protect the privacy of participants, I was encouraged to use other software to comply with GDPR regulations. These forms are not as appealing or as easy-to-use as other software and may have discouraged participants to respond. The questionnaire in particular was shared on Human Milk 4 Human Babies – Global Facebook group. Sharing a questionnaire in this group would have revealed why mothers shared milk informally versus formally and would reveal challenges to formal milk donation (which may have led them to

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23 donate informally). I made contact with the Swedish chapter, but they had not been active for the last two years thus I was unable to connect with an informal HM donor even locally. Lack of participation should have been expected. I should have taken a cue from the Milk Matters project mentioned earlier. Milk Matters designers ultimately distributed a survey because they had few attendees for their in-person workshop. It should have been noted early on that a mother’s daily schedule is dictated by her infants and children and a survey or journal is low on the list of priorities. A mother’s attention is divided between tasks and demands of child rearing, especially during this unprecedented time. Moreover, doulas, midwives, and other maternal health care practitioners were largely unavailable at this time. I would have made every attempt to conduct in-person interviews and visit milk banks in Sweden, but since they are connected to hospitals and care centers, they did now allow for visitors during this time. Phone and email communications were lost since care centers in Sweden provide information in Swedish. Calling various Swedish numbers and leaving messages on what one could only hope was Swedish milk banks, proved to be unsuccessful for a non-Swedish speaker. Eventually I connected with a handful of nursing mothers from the U.S. who all agreed to a 20-minute interview. For these mothers, interviews were easier than completing a brief survey. Lesson learned that the form documents arrives in matters and most mothers are not interested in filling out a survey, but chatting via Zoom was a quick and easy alternative. I was diligent about scheduling Zoom calls with preparatory emails, calendar invites, and ensuring it would not take longer than 20 minutes. Finally, it should be noted that I was only able to interview five nursing mothers and one past HM donor. However, these interviews yielded the most data. The interviews gave a window to feelings, attitudes, and experiences to milk donation. (See Appendix 8 for transcriptions and notes.) Reading and rereading interview transcriptions lifted certain themes. From these interviews, I extracted significant statements and began to develop ideas and main results. As a result of early project challenges, a longer Discover phase is illustrated in Figure 11. Moving forward, Define, Develop and Deliver phases were shorter in length but more clearly executed.

4.2 Discover

This section introduces relevant data that led to discoveries and moved the project forward. As result of netnography, I discovered a blog authored by a woman who described her milk donation experience and how donating made her feel. Jodi writes: I have to admit that it's a bit difficult right now to carve out the time to pump: once I get Zoë settled into a nap, which usually takes more time than I'd like, I've got a short amount of time to do everything on my to-do list for the day. Pumping itself is quite easy, of course: what I find a bit more difficult and time-consuming is taking all the steps to make sure everything stays super-clean and I avoid getting bacteria in the milk. As I get more accustomed to doing this, I hope to slip into a daily routine that makes the whole process easier (Elliot, 2017). She notes a struggle to keep her equipment sanitized and sterilized. I reached out to Jodi for a Zoom interview in which she elaborated on her lived experiences, described how she found out about milk donation, the challenges she faced, and even brainstormed a few ideas. She wished for: I think basic info is what’s needed, like this is what you need to do, you’ll pump– making it really easy to connect with who ever is going to take the milk whether I drop

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24 it off, someone picks it up, or I send it. Something that outlines the process and makes clear, what do I need to do, like technically and logistically, where does it need to go. Based on where you live, if you live in a remote place you’re going to have to send it away, for example. (For full interview transcription see Appendix 6.) This became a starting point for developing a digital tool that was informational. However, prior to this, early ideas were formed and could be categorized as devices that offer physical and technical assistance. Early ideas – artifacts and devices: 1. Self-sanitizing kit/device for breast pump or donor 2. Labeler and scale to eliminate small steps of labeling, dating, etc. QR code to request pick up (Figure 12) Figure 12. Sketches for a labeler and scale. These early ideas were muddy and strayed away from the scope of a digital tool, but are mentioned as ideas that led to other ideas. During this time, I continued to conduct interviews with nursing mothers and found possibilities with informational concepts. In the last 10 minutes of the interviews with nursing mothers, participants were asked to suppose they would donate milk and to search online for logistical and practical information. With permission, I was able to view the screen the participants were using to search synchronously. For example, mothers screen shared Google web browsers and described what information they were seeing and what questions they still have. Table 3 shows key findings and design openings from these interviews. Table 3. Key statements from each mother interviewed. M1 “What are their screening protocols? What kinds of things are they not allowing? What are their requirements?” M2 “So I have a stack of it (breast milk). I’m just figuring out, in this pandemic, how I can donate it. I’m just waiting for my friend to get back to me on who to go to because she’s done it.” While introducing the exercise: “I didn’t actually think to do that, I was just waiting for my friends to get back to me, but that’s a good idea. She’s taking awhile to get back to me.”

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25 M3 “It looks pretty easy, however I don’t know if it’s enough information.” M4 “I guess I’d have to know the process of it. Do I have to keep it in my freezer? Who’s going to pick it up? Do I have to bring it somewhere?” “I’d probably just call them ask what are other options for donating since it’s so far. Can I drop it off else where or can someone pick it up?” “It’d be nice to go somewhere and answer five questions to see if you’re eligible. You might be eligible if I answered yes to those five questions, something quick.” M5 “I would have been comfortable donating my breast milk, but I wasn’t aware of any place to donate.” The recurring theme was that nursing mothers wanted to or needed to do more research, but expressed they did not have the time to do so. They indicated specific areas of the screening process and wanted answers to logistical questions to understand what needed to be done in order to donate. The online search exercise also unexpectedly pointed three out of the five mothers to the Prolacta Bioscience website which is a privately held life science company (Bioscience, n.d.). Participants also found PDFs and brochures, but often densely displayed (see example in Appendix 9). Only one participant was able to find screening forms, but it was to request and receive milk, not to donate. Figure 13 shows one mother’s search results.

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26 Figure 13. Interview materials and documentation. In general, the interviews confirmed the challenges I experienced in locating a local milk bank and finding basic information for the screening process. From here, additional needs were taken into consideration and ideas for informational digital tools began to formulate.

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27

4.3 Define

All interviews were transcribed, read, reread, and coded by recurring questions. The issues I heard were noted and used to ideate design solutions (Table 4). From there three “support” categories were created: informational, social, and technical (Prabhakar et al., n.d.). Table 4. Chart displaying early concepts. Idea & Category Additional Information Pros or Cons Educational Toolkit – informational -for nurses -nurses are messengers and educators -can be customized by each milk bank -not enough research in this area to pursue -will be difficult to test with nurses Targeted social media campaign – social -for multiparous mothers -phone stopper, pop sockets with milk bank logo and QR code -“How to plan a milk drive” -more for raising awareness

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28 QR codes for milk bank products – technical -customized milk bank breast pumps & bags -QR code gives video instructions for pumping, storing, and sending -collaborate with breast pump companies, paper insert for how to donate milk with each instruction manual -little interaction design required, more product related Website or app that displays infographics – informational -“how to formally donate milk” -outline basic steps, “Generally, here’s how it works” make journey -could this add an extra step, to download? -milk banks may have different requirements, processes, etc.

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29 Recreate elements of waiting room – informational -waiting rooms people wait, consider, fill out forms, interact with other people -start screening process -read info / brochures (includes infographic idea) -read forums, read others donor experiences -wait to be called for blood work -chat and messaging abilities with milk bank The most feasible direction for the brief time span of the project was to recreate some sort of digital waiting room that aggregated information and made basic information easily accessible and engaging. It quickly became the most meaningful concept to pursue. During this time of synthesizing and ideating, I fortunately connected with a milk bank in the U.S. and began email communications with the Donor Experience Manager at the Mother’s Milk Bank (MMB). To briefly share, MMB is the largest non-profit milk bank in the world located in Austin, Texas. Mothers from 27 states send their extra breast milk to MMB to save the lives of medically fragile infants. Their mission is to save infants’ lives by providing prescribed donor HM (Breast Milk Donation in Austin, Houston, San Antonio & Beyond | Mothers Milk Bank, n.d.). From this point forward, it was resolved that a concept of a digital tool would be designed for candidate donors in the U.S. and a brief collaboration with MMB would be organized. MMB was introduced to the concept of a digital waiting room and agreed to review any mock-ups. Before reviewing and providing feedback, the Donor Experience Manager expressed needs and requirements of their own which helped guide the concept. MMB noted: A top challenge for our donors is understanding where they are in the screening process. Potential donors have to complete 4 steps before they can donate milk, and right now we communicate with them solely by email and phone to explain that they've moved on from step 1 to step 2, and etc. Eventually we'd like to build or invest in an online portal that women can check anytime to view their status, reach out to us with questions, complete more steps, etc. That way, they won't have to call or email us to find out what's going on with their application. This is why your idea resonated with me! (See complete email in Appendix 10). It became clear that the digital waiting room also had to: • Be quick! Targeted and instant • Have 5 pre-screening questions (idea from interview with M4) • Point to forms that need to be filled out

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30 • Provide functions to communicate with milk bank and other donor mothers. (Just call and talk to a person, idea from interview with M4)

Above all, the information provided must be fluid and engaging. I turned to more specific branches of UCD such as service design for inspiration and user interface softwares to begin digital sketching and prototyping (Houde & Hill, 1997).

4.4 Develop

Many online tools were considered during this time. Online tools such as Typeform, Marvel, InVision and Figma were considered to develop mock-ups of a digital waiting room. After careful consideration it seemed Figma was the most convenient tool to use since I wanted to avoid making the digital room “feel” like a mobile application though it was likely going to be accessed by a smart phone. The mock-up is designed to give a proper greeting and simulate a waiting room visit rather than having to download something that would have added another step. The digital waiting room is intended to be an online space that you can fluidly enter and leave, and communicate directly to the milk bank. In essence, the digital waiting room provides coherent information, builds social support, and walks a candidate donor through the screening process (Figure 14). Figure 14. Early sketches of the digital waiting room. A candidate donor enters a digital waiting room where she signs in with her first name and writes the reason for her visit (opportunity to ask any specific question she might have can get directly answered). See Figure 15 below.

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31 Figure 15. Welcome frames for the digital waiting room. She is then led to four options: (1) answer five preliminary questions to see if she’s eligible, (2) fill out screening forms, (3) find steps in the screening process and where you are in those steps, and (4) ask for help delivering milk (requesting packing information, volunteer help, etc.) See Figure 16. Figure 16. Second frame that lists main tasks and leads to five preliminary eligibility questions.

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32 Moreover, two main features of the waiting room is the ability to chat with those in the virtual space that would hypothetically include a MMB staff member or other donors who may be at various stages of screening and donating (see Figure 18 and video link). One could read other donor questions and experiences. Figure 17. Frames for messaging and chat functions. Figure 18. Figma overview of mockup.

First Iteration:

Video Link

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4.5 Deliver – Testing & Feedback

Continuing with the UCD methodology, I conducted a less extensive version of usability testing, but still fruitful and effective. A mockup was sent to MMB for initial feedback (Figure 18). MMB did not test with their candidate donors, just within their administrative staff. Together, we discussed two remaining parts that could still be improved and implemented in the digital waiting room, the phone screening and the forms. After careful consideration, phone screenings would still need to take place. MMB noted research shows people answer health questions differently by phone versus in a form so they ask the same questions in each format to ensure accuracy (see email communications in Appendix 10). The Donor Experience Manager also shared, “But the portal could advertise our phone number and have a clickable link to initiate the call if someone's viewing it during our open hours._” Additionally, I wondered if the forms could be transferred to the digital waiting room and found that the paperwork is already filled out digitally. MMB noted, “Last year we converted the forms to LuxSci, an online compliant form solution. They live on a hidden page of our website currently, but I could see them living within this online portal instead, as you've envisioned.” Since the forms itself were accessed and formatted in the way that best suits MMB, I concluded that it should remain as is. All in all, MMB could see potentially eliminating all email communication if they were to use the digital waiting room. Additional input from MMB: • The ability for MMB to send templated messages or bulk-send messages to donors. Automated messages that are sent when moms move from one step to another in the screening process. • MMB communicates with mothers one-by-one every 6-8 weeks to check in on the health of the mother and check whether she has been ill or on any new medications. With the messaging function, have a reminder or prompt messaging to MMB regarding their health status.

This feedback led to the idea for “Revisit the waiting room” reminders for every 6-8 weeks. Given these points, it was clear that the next step would be to investigate Client Relations Management (CRM) software systems to sync with the digital waiting room. CRM softwares aid in data management and facilitate automated communications, which MMB was already contemplating. A My reflection during this time: When I got feedback, I was surprised that the Donor Experience Manager gave such valuable feedback. She mentioned ways the milk bank would adopt this digital waiting room. She gave feedback as if they could use it tomorrow and mentioned what else they would need to implement this. It then became a question of streamlining it for the milk banks as well. By inviting the milk bank’s feedback, I invited another angle. Though the digital waiting room was intended for donors, realistically speaking, it was a tool the milk bank would operate so I had to adapt the digital waiting room for the needs of the milk banks as well. Two users. Streamline the screening process on both ends. Had such a strong vision to helping only the donors, kind of overlooked the milk bank. But the milk banks play an integral role in helping the donors thus I should really improve this for them as well.

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34 CRM system combined with a digital waiting room could be beneficial for milk banks and potential milk donors. Soon after, I shared a second iteration of the mockup to six nursing mothers and aimed to conduct rapid usability testing. I gave mothers the option to view the mockup by email (but accessible by mobile phone) or a short, 10-minute Zoom meeting to share feedback in real time. In the email, mothers were instructed to open the link, explore the digital waiting room and send any initial thoughts and feedback (see second video link below). No questions were sent during this time. This was so that mothers would not be tempted to look for certain things, but simply “look around” as you might a physical room or website. The next day, I sent a follow-up email with two questions: Do you have major questions unanswered after viewing the digital waiting room? What parts have been the most helpful?

Second Iteration:

Video Link

The main changes in the second iteration are mostly graphical and smoother transitions between frames. I also added a prompt, “Tell us about any changes to your health,” but this could be further developed with popups and chat boxes. Unfortunately, I received just one response from a mother who wrote, “Looks great!” and no responses to my follow up questions; however, I was able to conduct one usability test with one nursing mother in the same fashion as the online research exercise. I set up a Zoom call and sent a link to the mockup and looked through the digital waiting room with the mother. The mother was encouraged to think aloud, describe what she saw, and verbally express any questions during this time. I listened and watched from screen sharing. First, the mother expressed during the Sign In screen, “My reason for my visit would be to ask how do I deliver the milk.” Second, it became obvious that the buttons to move from frame to frame were not as intuitive so I had to provide guidance on how to return to certain topics. Third, I asked the mother after if she had any big unanswered questions left and what she found (un) helpful. Table 5 summarizes comments from testing. Table 5. Feedback from mother after viewing the mockup. 1. The last question in 5 eligibility questions, rephrase the last one to ask “How many extra ounces do you produce every week?” 2. Show somewhere how important milk banking is for babies in need. 3. Can I add milk from the same day to the same container? Will the milk bank send me the container or bags? 4. What are some of the guidelines I have to follow while donating? Are there guidelines? 5. Maybe add a section of “Things to Know” and give lessons on how to store and freeze the milk. The first two comments were interpreted as personal preferences, and most milk bank websites provide additional information. However, the last three comments were taken into consideration.

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35 Typically, after the milk bank verifies blood results, they send the donor mother a kit that includes bags for freezing milk and tips for pumping, sanitizing, and storing. When the milk is expressed, the donor should write her name and date on the bags. This is so the milk bank can determine how to pasteurize based on how long it has been frozen and what stage of lactation the mother is in. For example, if she has been breastfeeding for a newborn, her milk will have a higher protein content than a mother in later stages of breastfeeding (Arnold, 2010). It became clear from this test that other topics could be included. After further research into milk storage, how to properly store HM could be included as topic. For example, the time frames between refrigerator and freezer, and how long milks has been in the freezer–are all critical pieces of information for proper preservation and storage of HM. Perhaps this could be addressed with a section of the waiting room titled “Things to Know” or “Pumping and Storing Guides.” The latter title/section could include guidelines that remind donors to not smoke, drink, etc., while pumping. Likewise, the “Request Milk Delivery Assistance” could be adjusted to include “Request More Milk Bags” and provide video guides for storing HM. All in all, usability testing with the nursing mother and MMB proved to be beneficial for the next iteration. The feedback from both stakeholders improved the mockup considerably and invited new topics and areas in the digital waiting room.

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36

6. Results

This chapter describes the project’s main results and various components of the digital waiting room. Chapter 7 discusses and analyzes results in greater detail. Figure 19. Image depicting options a candidate donor can see in the digital waiting room. A virtual space designed for HM donors who have voluntarily decided to donate their surplus and milk banks that mediate the donation process (Figure 19). Overseen and operated by a milk bank, the digital waiting room provides information and direct communication to a local milk bank. A digital waiting room can improve and clarify screening steps in the donation process. By providing informational and social support, milk banks create more transparency in the screening process. When visiting a digital waiting room, one can: • Get an overview of the screening process; fast facts and steps • Quickly see if you’re an eligible donor • Begin screening process from your mobile phone • Potentially interact with other donors or milk bank staff for social support

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37 Figure 20. A walkthrough of the digital waiting room.

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38 Figure 20 illustrates the user flow of the digital waiting room. Upon entering the digital waiting room, a user will first be prompted to sign in with her name and the reason for her visit. The second step is to review certain tasks and topics to begin the screening process. She also has the option to read guides and communicate with the milk bank. Messages could consist of updates or specific questions for milk bank staff. Five areas of the digital waiting room are worth highlighting to further describe its objective. To determine whether or not a mother is eligible, she can quickly answer five short questions. If answered correctly, she can proceed with a phone screening and call instantly. She can also see a summary of the screening process (Figure 21). Figure 21. Two frames of the screening process: questions and outline of steps.

Exploring Digital Tools for Donor Mothers: Understanding Human Milk Donation &amp; Milk Banking Challenges