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4.3 | Findings: the experiences and needs of mothers with a low SEP In this section, we portray the experiences of mothers with a low SEP in our digitalized society. We describe our findings in terms of the four types of access: motivational, material, skills and usage access. Furthermore, we portray the mothers’ needs and ideas in order to develop appropriate policies and interventions.

Motivational access A strong motivation for mothers to have access to ICT is related to their children. Mothers are convinced that ICT can help their children in school and increase the chance of a better life: My children definitely need a computer for their homework. For me, it is annoying to continuously ask the neighbor if my children can use her computer. (Nuran, FGD3). Mei-lan (PO1) mentions that her daughter learned Chinese by playing games on her phone. She proudly highlights ‘She doesn’t even have an accent […] I have one’. In addition, most mothers highlight that ICT is important for their children to be socially included. As Nilofar, mother of twins, clarifies, I want a computer for my children. They get to know all kind of websites on school and TV. I want my children to be happy. (Nilofar, PO1)

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One belief shared by almost all mothers is that children below the age of five should not have access to ICT, explaining that it is ‘Bad for their eyes’ and ‘Bad for their brains’. Some mothers also explain that their children motivate them to learn more about the computer themselves. Some mothers feel anxious that their children are having to use a technology which they themselves do not master. Alicia (FGD4) explains that she has no idea what her daughter is doing behind the computer for school. The digital society also makes it hard for mothers to stay involved in their children’s learning process. Esila, mother of two children, explains that her niece was working for a half hour on her laptop for a school project but in the end only wrote one small paragraph. Esila is worried about what her niece was really doing at the computer and what she saw on the Internet. Many mothers add that they do not trust the online world. In other words, some mothers want to learn more about ICT in order not only to be able to help their children, especially with homework, but also to be able to gain insight into, and have control over, what their children are doing online. In contrast, some mothers are not motivated to learn more about the computer. They ask their children (if over 12 years of age) or other family members to help them out.

For example, Rashida (PO4), who has seven children, explains, “My son can find out how much is in my bank account’. She clarifies, ‘I am busy with the children. […] and I don’t want all those things in my head.”. Other mothers explain that taking care of their children, managing their household and making ends meet every week is more important than learning how to work with a computer. This indicates that for mothers, it is important to have time and energy to learn more about using a computer. For example, Lybosa (PO7), who has been in the Netherlands for 37 years, started only 6 months ago with her ICT and language course. The main reason for her to start the course is that her children have moved out. She finally has time now.

Material access Most mothers explain that they often have access to at least one ICT device: a smartphone, computer, laptop or tablet. In households with older (>12 years) children, a programme of the City of Amsterdam9 ensures that there is at least one device in the family: I don’t have a computer at home. […] I can’t afford it. Too expensive. But luckily my son gets a laptop from the City of Amsterdam. That is so lovely. […] It is important for my son but also for myself. (Doria, SSI3) 9 The City of Amsterdam provides laptops to children of secondary education and MBO (vocational education) of which the parents have a low income. Once in 4 years parents with children between 10 and 18 years old can receive a laptop or tablet for their child and can request a reimbursement for the Internet costs (Gemeente Amsterdam, n.d.)

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Nevertheless, it is not self-evident that each household in Amsterdam has a proper working device and that all preconditions (wi-fi, hard- and software and printer) are available to use ICT effectively. For example, Nyah (PO2) explains that she does not have wi-fi in her new house. She mentions more than three times: ‘Someone needs to come to connect the Internet’. Jantien (SSI7) adds that her children often need to print documents for school, but she doesn’t have a printer at home. She needs to go to the public library. For each page, also for the wrong ones, she needs to pay €0.10. The cost sometimes rises to €2.20. Jantien stresses that she could have bought a loaf of bread for that money. Most mothers highlight the importance of having material access at home: My computer is broken, I need to do everything with my phone. But there are things I can’t do with my phone: taxes and insurances. (Lauren, FGD3) Deema (FGD3) also has no home computer. During a ‘back to work course’, she explains that she had to send her curriculum vitae to a company that morning. She needed to adjust something, but she couldn’t do that on her phone. With stress in her voice, she states, “I missed the deadline of the job application.”. There are several public places were mothers can have access to a computer and Internet, such as public libraries, Internet cafés or community centres.

For the mothers without a computer at home, using a public computer is not the perfect solution. Some mothers explain that those public places lack privacy, they feel ‘unsafe’. Deema (FGD3) points out that she is afraid of unsolicited viewers and that her passwords will be saved on the computer. Furthermore, she is easily distracted by all of the noises around her. Moreover, no support is available and the timeslots cause many mothers a lot of stress.

Skills access Based on the SSIs, POs and FGDs, we cannot give a detailed description of the mothers’ ICT skills. However, most important is that illiteracy restricts many mothers’ ICT use. To the question, what makes it hard to use a computer, Ghina (SSI1) answered, “First language, second no knowledge about how to use the computer.”. A lot of mothers agree with Ghina. They explain that if you speak the language most websites will not be that complicated. But if you do not know what is on your screen, you will definitely get lost. Furthermore, it stands out that most mothers show fragmented ICT abilities or so-called ‘splinter skills’. For example, during one of the language lessons in a primary school, mothers practise the Dutch language on a laptop. Katinka (PO4), a mother from Kosovo with three children, seems quite skilled on her phone and on the laptop. She explains a lot to her neighbour. However, at some point, she accidentally pressed the Caps Lock

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button. After a while, she needs to re-enter her password. She is stressed about why all the letters are in capitals and she has no idea how to fix this problem. Also, Doria (SSI3) experiences difficulties and frustrations because of her ‘splinter skills’. She explains, I have an email address. […] I use it for example if my doctor asks me to give my e-mail address. […] If someone sends me an email I can react to that, but I can’t make a new one. (Doria, SSI3) Finally, some mothers explicitly mention that it is easier to use a smartphone than a computer. According to Esila, her smartphone is a small computer. Also, Céline (SSI6) explains, “I use my smartphone actually for everything.”. However, the previously described example of Deema and Lauren’s quote highlight that mothers cannot do everything on their phones. Most mothers highlight that a smartphone or tablet is more for the ‘fun things’, while you need a computer to arrange more official matters.

Usage access YouTube is the Internet site mothers most often mention and is generally used to find information, such as about cooking, health and household chores (e.g. ‘how to remove this spot on my clothes’ or ‘how to attach this button to my clothes’), beauty, job interviews and other cultures. Also, Google is used to find information about such topics: I will search all information on the Internet. If I have pain in my stomach or if something happens to my children. I will search that on the Internet. What do I need to do? I always ask Google. (Ghina, SSI2) The advantage of Google and YouTube over official websites is that mothers’ can look for information in their own language. During PO4, Kadija and Zainab explain, Kadija:

Yes, he [her husband] is doing everything with income, the bank, the money […] I don’t understand, my husband does. Researcher: What makes it difficult? Zaineb: Maybe the language? Yes, the language? Kadija: Language yes. […] Kadija: Sometimes when I need to cook I search in Pakistani. Zaineb: Ooh. Yes. Kadija: Actually, I always search in Pakistani. I can read. Also, for my children I search [about how to take care of her children]. Other applications often mentioned are WhatsApp and Skype, which are used to keep in touch with their families back home and friends. Furthermore, mothers use the computer

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together with their children to practise for school or to find information. Magister, an online programme used in secondary schools to communicate with students and their parents about grades and presence, is most often mentioned: Just the Internet, practising for school with my son. They call it Kinzy, Taal Begrip, and Ballon [online programmes used in primary schools]. He has to practise every day. And I also check the Magister page of my daughter every day. (Zairah, PO6) Sometimes I take a look at the homework of my oldest two children. I have two children in secondary school. I always check their schedule, what they need to do that day and if they are in time. […] Yes, if they are in time in school, I want to check everything, homework, always checking. (Olivia, PO6) Mothers do not spontaneously mention that they use a computer to find information on the websites of government agencies, tax authorities, (health) insurance or other agencies. Some mothers lack knowledge of the online possibilities. For example, Nyah has no idea what a ‘Digi-D code’ (personal online code to communicate with the Dutch government, municipalities, health insurance, hospital and several other authorities) is. Several other mothers mention that they do not have a ‘Digi-D code’.

The mothers who are familiar with the official websites say that these are too complicated, mostly because of the language level used. Another major issue in using the Internet, especially official websites, is that of confidence and trust. Almost all mothers mention that they do not trust the official websites. Meilan (FGD2), for example, explains that she needed to apply online for a public transport card for her youngest son of six. It failed mostly because she was afraid that she did not fill in her personal details correctly, afraid to pay for something that will not be delivered because of a small mistake. Furthermore, Jantien mentions, Those websites [of the City of Amsterdam and the Dutch government], if I click somewhere my screen changes. I don’t know how to get it back. (Jantien, SSI7) She is afraid that if she clicks on wrong buttons it may have major consequences.

Needs and ideas Asking about the mothers’ needs and advice to increase accessibility to ICT, their primary reaction is that they have needs for their children. A printer and homework assistance are often mentioned. For example, Doria (SSI3), a single mother, explains that her son needs a printer for school:

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Researcher: You told me you like to have a printer? Doria: Yes, I really want one. Researcher: Why do you need one? Doria: If my son goes to secondary school. He needs to print a lot, but he can’t. Maybe he can go to the library […] but [the road to the] library is not always safe for my son. […] and the library is not in the neighborhood. Doria also explains that she really needs homework assistance for her son. It is frustrating for her because her own limited knowledge of Dutch means she cannot help her son with his homework. She can also not afford someone who can help him: For parents who live on social welfare and can’t work like me. And, yes, then you can’t afford a tutor. I heard that you need to pay 10, 20 or 8 euro for one hour. For me, that is too expensive. (Doria, SSI3) Asking more about the mothers’ own needs to increase meaningful ICT use, most say that they first want to improve their Dutch. Many mothers indicate facing more barriers because of their lack of language skills than their lack of ICT skills. For example, in the language course in the community centre “complicated letters” is a recurrent theme. Larissa (PO2), a mother originally from Russia and living in the Netherlands for 6 years, brings a letter from her doctor to the language class. A letter with a lot of jargon and no pictures.

Mothers indicate that such letters, but also websites, need to be tuned to their needs. Bouchra (PO5), a mother of three children, highlights that if websites contained less jargon, she would not need help with the computer. Ghina (SSI1) adds, “For example for the website of the City of Amsterdam you really need language. […] Everyone needs language.”. Furthermore, a few mothers say that they would prefer that official websites could also be accessed with a smartphone, since several do not have access to a proper working computer or laptop with Internet access. In addition, almost all mothers need someone who can help them with the computer. The mothers explain that the digital world has no face. A computer is not someone who you can trust and ask questions about personal and confidential information, such as an online bank account. Lyobosa (PO4) points out that “just having a computer doesn’t make sense.”. She likes to go to the computer walk-in hour at her language school because there are volunteers whom she trusts and help her both with Dutch and the computer. Lybosa indicates that she never goes to the public library because there is no one who can help her. Almost all mothers agree with her. For Furat (FGD2), “The public library is a place for someone who knows how to work with the computer.”.

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A few mothers prefer to improve their computer skills at home but most highlight a need for a place where they can learn more about computers. At home, mothers have no time for themselves, because the household and their children are more important. Eslem (FGD1) says that, at home, she needs to attend to her crying baby. Now, she hardly has time to cook, never mind to learn. For the mothers, it is important to have a place where they feel safe and receive personal attention from a teacher they trust. More than half of the mothers mention community centres as an ideal place, while others mention language schools and primary schools. Community centres, language and primary schools are seen as inviting places where they can ask questions, complement each other, laugh together and share good practices or tips. Furthermore, the mothers trust the volunteers and/or professionals. During a language course in a community centre, Nilofar (PO1) explains, “Clara [volunteer] is also my doctor.”, the other mother nods enthusiastically. The mothers completely trust Clara and feel free to ask all kind of questions. Mothers attending the community centres and language schools are all very grateful for the help of the volunteers. However, observations show that the digital skills of some of the volunteers are quite low.

The following fragment of the first author logbook highlights this: Larissa (PO2) brought a letter to class in which was explained that she needed to come to the hospital for a check. She has no idea how to find her way to the hospital. Nyah (PO2) explains that you can find that on Google. She explains that you need to search for the address and then push the button ‘route’. Since the community center has no computers, tablets, and/or Wi-Fi, the volunteer use her own smartphone to search for the route. I [the researcher] needed to help the volunteer and we only showed the results to Larissa. Larissa was helped, but no one learned something. Practical conditions for places where mothers would like to improve their ICT skills are closely related to the context of poverty. First, the location should be close to their homes. Some mothers do not have the budget and time to travel out of their own neighbourhoods. Furat (FGD2) explains, ‘East is quite far away. I lost time and money on the way’. Second, the timing is important. The lessons need to be during school hours, because mothers do not have the money to pay for daycare. Ghina (SSI1) explains, “[…] at school. A safe place. […] It is between 9 till 11. The children are at school, all mothers have time.”. Third, it should be a place without daily distractions, for example, children, household chores and buying groceries.

Fourth, there is a need for a place for pre-school children. Observations of language classes show that mothers bring their small children because they don’t have the money to pay for a babysitter. Finally, mothers like to get personal attention and learn things they need to know at that time. Mothers indicate

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that the ‘walk-in hour format’ is more suitable than classical lessons. Deema (FGD3) explains, “then [in case of classical lessons] I come for nothing, I don’t want to learn things I already know.”.

4.4 | Discussion This study highlights the complexity of accomplishing digital inclusion for mothers with a low SEP. We followed an intersectionality approach (Crenshaw, 1989) and used the multiple access model of Van Dijk (Van Dijk, 2005) while analysing the mothers’ experiences and needs in our digitalizing society to inform policy. While this study was only focused on the inclusion of mothers with a low SEP, a high percentage of the included mothers had a non-Western background, which is only partly explained through the high percentage of citizens with a non-Western background in the researched neighbourhoods, that is, Amsterdam New-West (52%), East (32%), West (31%), and Amsterdam North (38%) (Onderzoek Informatie en Statistiek[OIS], 2018). This suggests that some socio-demographics deserve special attention when studying the digital divide. The intersectionality approach is particularly well-suited to highlight the interrelatedness of a wide range of socio-demographic characteristics such as race, class, age, sexuality and disability, which can influence how technologies are experienced and used (Crenshaw, 1989). This study shows that it is indeed relevant to attend to such intersecting socio-demographics, but that it may be worth specifying in more detail how these play out differently in different settings.

In our case, although this study was focused on mothers with a low SEP irrespective of migration back- ground, we ended up including 92% non-Western immigrants. This study therefore highlights that motherhood, poverty, low literacy and education and experiences of the digitalizing society were strongly influenced by being a non-Western immigrant with Dutch as a second language (generally first-generation). Being more specific about this type of intersectionality shows that policy should not focus on the digital divide in general but should adapt to the drivers of the digital divide in a particular area. In Amsterdam, given the strong influence of language on digital inclusion, policy could, for example, be more successful when integrating language training, poverty alleviation and ICT skills. Such sensitivity to specific intersections of socio-demographics also indicate that it can be deceptive to think that the first-level digital divide, material access, is no longer a substantive issue in a country like the Netherlands. Although Internet coverage approached 96% (CBS StatLine, n.d.), this obscures the real material access to ICT for certain groups. Most mothers have home access to at least one ICT device, but often lack the basic conditions, for example, good working devices, appropriate software, Wi-Fi or

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a printer. This is in line with the theoretical lens of technology maintenance that suggests that material access is, for all users, more than the ability to purchase a device (Gonzales, 2016; Jackson, 2014). Marginalized groups more frequently experience malfunction and disconnection because they need to work with second-hand and cheap devices (Gonzales, 2016). Our findings also show that motivation to use and learn more about ICT entails more than the notion of Van Dijk (Van Dijk, 2005) that motivation is shaped by a person’s attitudes towards technology. Mothers’ motivation is first and foremost influenced by the wish to provide a better life for their children. Many mothers were eager to learn more about ICT because they want to help, and/or check on, their children. However, our findings high- light that with developing ICT courses, policymakers should keep in mind that the complex daily reality of poverty and family life strongly influence mothers’ priorities and cognitive resources. For some mothers, the struggle to get by, managing sporadic income, making difficult trade-offs and/or dealing with poor language skills is more important than learning ICT skills. In addition, the cognitive system has limited capacity and being poor means coping with a deficit of cognitive resources (Mani et al., 2013).

Financial concerns or the struggle with poor language abilities leave fewer cognitive resources available to learn new things, like ICT skills. Moreover, the social environment affects the quality of support for learning new ICT skills (Courtois & Verdegem, 2014; Helsper & Van Deursen, 2017). Our findings suggest that mothers who seek support in their ICT use often get informal support from their children and volunteers. While all mothers indicate that they are very grateful for the help of volunteers, observations show that the digital skills of some of the volunteers are quite low. Also, the literature illustrates that informal support from children, other family members and friends might be readily available and can solve the problem but is often not good enough to increase the mothers’ ICT skills. Those with the lowest ICT skills seems to have the most difficulty in obtaining high-quality formal support and are there- fore often dependent on informal support of poor quality (Courtois & Verdegem, 2014; Helsper & Van Deursen, 2017). In line, mothers indicate the great need for a place where they can improve their ICT skills. ICT education should be of a sufficient level and match their practical and personal needs in terms of the complex daily reality in which they live.

Interventions need to be efficient in the sense of time, motivation and energy since people have other important issues to tackle. Mothers’ highlight the need for integration of ICT education in the places where they already go, for example, primary schools, language classes or debt- assistance classes. It is not new that today’s digitalizing society demands that the specialized social services should continuously adapt to the changing users’ needs and changing society.

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However, practice shows that there is still a lack of integrated social services. Most social service organizations are specialized and focus on one area, for example, language, debts, ICT skills and others. Funds of the Dutch government or the City of Amsterdam are often solely intended for language, poverty or ICT skills, which makes it hard for social services to integrate. Interestingly, most mothers indicate to use ICT, to a greater or lesser extent, to find information on YouTube or Google, or to communicate with friends and family via Skype or WhatsApp. Those programmes are visual and high-level Dutch linguistic abilities are not a primary condition for using those programmes. Our findings suggest that low literacy impacts the likelihood of understanding the more official websites, for example, websites of governmental agencies and programmes, that are not attuned to the mothers’ needs. For responsible web-based information service, for example, health, government or legal information, the websites should be attuned to the capabilities and strengths of the most vulnerable groups. Feminist studies of STS highlight that often the social and cultural factors of the majority affect the design and use of ICTs (Haraway, 1991; Wajcman, 2010). Mothers with a low SEP are often neglected in the design processes.

Without the deliberate inclusion of vulnerable groups, there is explicit exclusion (Wajcman, 2010). The results of this research highlight the need for future research in order to develop a system that guarantees the inclusiveness of mothers with a low SEP in the design of ICT and policies concerning the implementation of ICT.

Limitations and future work This study provides new insights into barriers that hamper mothers in making meaningful ICT use and their needs and ideas, though some limitations warrant consideration. First, the main language in the observed formal and informal events and interviews was Dutch. Since Dutch is a second language for most participants, this sometimes made it difficult for the mothers to understand the questions and respond fluently. To eliminate the language barrier as much as possible, language teachers and other participants helped with clarifying the questions and answers. Moreover, by using a tablecloth during the POs and FGDs, we adapted our method to the capabilities and strengths of the mothers, which resulted in a deeper understanding of the mothers’ experiences and needs. However, we cannot be sure that this allowed us to fully capture their contributions. Second, most participants had a non-Western background and raised a number of language-related issues. The small number (8%) of mothers with a Dutch background did not mention any other barriers, probably because almost all of these are related to motherhood and the context of poverty. However, since language difficulties are considered one of the main barriers to using ICT in this study, and other studies report on the effect of cultural difference on Internet use (e.g.

Guttman et al., 2018), we recommend that future studies focus more on cultural differences concerning Internet use. Finally, the conclusions are

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based on the experiences of mothers living in a particular time and place. The findings are open for consideration in other contexts and time periods, in particular since time is likely to have an impact on the findings because ICT possibilities are rapidly changing.

4.5 | Conclusion The perspectives, experiences and needs of mothers with a low SEP in respect to ICT were mainly influenced by motherhood, poverty and the complexity of ICT, all of which were amplified through being first-generation, non-Western immigrants. These mothers’ needs are multifaceted and go beyond simple distribution of ICT devices. ICT education should be tailored and integrated into other social services and the daily lives of the mothers involved, which in this case means the need to integrate ICT training with poverty alleviation and language skills. Though such needs will differ according to the setting and socio-demographics encountered, ICT education at all times should be efficient in the sense of time, motivation and energy required by all involved. Moreover, there is a clear need for changes in the supply of the ICT. Policymakers need to pay attention to adapting the web-based information services to the mothers’ needs and strengths, much like we as researchers needed to adapt our methods of the POs and FGDs to make them more trans- parent and visual. Just as we would have found it nearly impossible to make the mothers fit our methods, it also seems more promising to change websites to match the capabilities and strengths of the most vulnerable than to merely try and teach them how to use ICT in a world that has not been designed for them.

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Exploring the boundaries of ‘good’ participatory action research in times of increasing popularity: dealing with constraints in local policy for digital inclusion

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Abstract The popularity of participatory action research (PAR) increases the risk of tokenism and blurring the boundaries of what might be considered ‘good’ PAR. This became a pressing issue when we were invited by the City of Amsterdam to conduct PAR on digital inequality with vulnerable citizens in Amsterdam, within serious constraints of time and budget. We decided to take up the challenge to offer citizens an opportunity to share their needs. This paper aims to increase the transparency of the complex reality of a PAR process in order to help new researchers learn about the challenges of PAR in real-life situations, and to open up the discussion on the quality and boundaries of PAR. Though we managed to implement some core ethical principles of PAR in this project, two were particularly under pressure: democratic participation and collective action. These jeopardized collective learning and might unintentionally feed stereotypes regarding people’s capabilities. Nevertheless, this small and local study did manage to create ripples for change.

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5.1 | Introduction The worldview of PAR, which gained much of its impetus in the 1940s from marginalized communities in low- and middle-income countries who were vulnerable to exploitation, is based on the notion that reality is not an objective truth to be discovered but ‘includes the way in which the people involved with facts perceive them’ (Freire, 1982, p. 30). One of the core values of PAR is that knowledge is co-produced with a community; people working together to examine a problem with the goal of addressing it for the better (Abma et al., 2019; International Collaboration for Participatory Health Research (ICPHR), 2013a; Reason & Bradbury, 2001a). The idea that this approach is more likely to have a broad social impact fits well with the increasing concern, high on the agenda of funders and governments across the world, to ensure that research has a social and economic impact (Abma et al., 2017; Penfield et al., 2014). It is increasingly acknowledged, for example, that clinical and health service research failed to translate research into practice and policy (Grimshaw et al., 2012), did not always meet people’s needs, nor do justice to their daily reality (Chalmers et al., 2014; Ioannidis et al., 2014). PAR is also considered to respond to increasing complexity; the need for multiple perspectives and brief cyclical learning processes (Ter Haar, 2014).

Finally, the approach fits the call for knowledge democratisation, as citizens and patients increasingly demand to have a say in policy and research affecting them (Anderson, 2017; Stirling, 2008), and for contextual knowledge. Moreover, it acknowledges that people are experts about their own life. Knowledge democratisation and social impact have become important dimensions in how research is funded and evaluated (Cook et al., 2017). This is the case for funding agencies in the Netherlands; in the past, these agencies asked the researcher to simply tick a box regarding whether they would or would not include citizens/patients. Nowadays, researchers need to explain how they are going to involve the public or patients in their research and, more recently, how they involved stakeholders in writing the research proposal (ZonMw, 2006). This movement places further pressure on researchers – already dealing with the stress arising from limited funding opportunities (Halffman & Radder, 2015). Not already acquainted with the approach, they quickly need to educate themselves in the principles of PAR and how to enact them. This upsurge of interest in PAR also means that it will be stretched to fields and institutes that are not yet acquainted with the values and the necessary conditions for it to flourish, such as clinics and local governments.

In other words, there is a risk of tokenism and of blurring the boundaries of what might be considered ‘good’ PAR. The increasing popularity of PAR challenges inexperienced but also more experienced PAR researchers. There is recognition that some research that calls itself participatory does not align with the core principles and basic philosophical assumptions, motivations and practices that

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PAR practitioners would recognise (Springett, 2017). Moreover, there is evidence that PAR is not necessarily a good thing in itself and has even caused some major harm, creating mistrust and participation fatigue (Banks et al., 2013; Cooke & Kothari, 2004). PAR scholars place the assessment of quality and critical reflection high on the agenda (Abma et al., 2017, 2019; Banks & Brydon-Miller, 2019; Cook et al., 2017; Dedding & Slager, 2013; International Collaboration for Participatory Health Research (ICPHR), 2013a; Lenette et al., 2019). These scholars point to the ideal and rhetoric of participation and call for creative solutions, asking PAR practitioners to engage in self-analysis of the tensions they encounter in conducting democratic collaborative research. There is a need to reflect critically on questions such as whether participation is always good, and always necessary.

When is it good, or good enough? Does it always need to be small, local and long term, or could it also be done in a short timespan with a bigger group, for instance with the help of social media? And if participation is based on values, and is not a method, what do these values look like in practice? The often-reported lack of extensive case description makes it hard for new PAR researchers to become acquainted with the core values of PAR and unsure of how to put them into practice, but also limits the conceptualisation of PAR processes, its impacts and quality (Springett, 2017). As Cook (2012) argues, impact is embedded in the process, which means it is not always easy to distinguish among and articulate its different forms. Moreover, scientific journals outline how researchers should report their scholarly research, set strict word limits, and work with peer reviewers who may not always see the value of extensive case descriptions. This can result in a discrepancy between what PAR researchers actually do and how they report what they do. Furthermore, in line with PAR, researchers prefer local impact and also need to please local funders and so often produce grey literature, which is harder to find in scientific databases (Jagosh et al., 2012).

The above critical reflections became pressing when we were asked by the City of Amsterdam to conduct a PAR process on digital inequality among citizens in order to feed into the upcoming policy for digital inclusion. Due to the political timeframe, the results needed to be available in seven months. As an experienced (PAR) researcher (CD) and a new scholar in the field (NG) we immediately knew that involving ‘citizens of Amsterdam’ in seven months, with funding for almost one full-time equivalent (FTE) researcher, would be ‘challenging’. Meaningful participation would be hard to achieve. The municipality, however, could not offer more time or money; their staff were curious to see what new insights participation would bring to their understanding, but could not yet sell the ‘new’ approach to higher levels to free up more funds. Above all, they had to inform the alderman about possible policy implications and priorities for action within the scheduled time.

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This posed a dilemma; not accepting the assignment would mean that policy-makers would continue to take important decisions for citizens in vulnerable situations, while accepting the opportunity might lead to tokenism, devaluation of an approach that is still critically viewed for being less scientific (Cook 2012) and might harm our personal careers as scientists. After careful deliberation, we decided to take up the challenge in order a) to give citizens an opportunity to share their experiences and needs and b) to make policymakers more aware of the value of participation and the often-complicated situations in which people live. After the project was finished, we received some critical questions about the generalizability of the findings, but the report was largely well received. The findings attracted attention at higher policy levels, and helped to set a new national policy on digital inclusion. Nevertheless, the question remained for us of whether we should ever again try to do PAR under such constraints.

Therefore, we decided to reflect on our own experiences in PAR process: to what extent did we manage to put (some of ) the core ethical principles of PAR into practice and actually contribute to change? We invited two ‘critical’ friends in the writing process (Kember et al., 1997), namely PAR researchers (JB and TA), who have extensive professional and experiential knowledge, to critically reflect on our process and lessons learned. This paper aims to increase the transparency of the complex reality of a PAR process in order to help new researchers learn about the messy process of PAR in real-life situations, the often problematic and contradictory relationships and the prerequisites, and at the same time to open up discussion about the quality and stretching boundaries of PAR. Before we share our experiences in a PAR project under restraining conditions, we first shortly summarise the basic principles of PAR and provide some context for the case.

Short summary of the basic principles of PAR PAR builds on a long and diverse history drawn from a range of disciplines, each of which has informed and developed its own understanding of what PAR is. Fundamental to PAR is a ‘shared recognition that science is more than adherence to specific epistemological or methodological criteria, but is rather a means for generating knowledge to improve people’s lives’ (International Collaboration for Participatory Health Research (ICPHR), 2013a). The aim of involving multiple perspectives and different forms of knowledge (experiential, practical, traditional and scientific) is to develop a richer and more meaningful portrayal of the subjects of research, and to facilitate a learning platform for representing the multiple experiences, hopes, and fears of those directly involved as route to reducing (health) inequalities (Abma et al., 2019). While this will depend on the focus of the study, stemming from an emancipatory movement the focus is on the poor and marginalized in society, who seldom have a voice in defining the problem and solutions. The focus is on shared learning and action for social change (Abma et al., 2019; Cornwall & Jewkes, 1995; Khanlou & Peter, 2005), within the local context. It is not a ‘quick fix’

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and it does not follow a linear and predictable process. On the contrary, its endpoint is often open (Piggot-Irvine et al., 2015). We used the key ethical principles of PAR, as defined by the International Collaboration for Participatory Health Research (ICPHR), to reflect on the process and the outcomes. These principles, summarised in Table 5.1, do not suggest how to act, but need to be interpreted in the light of particular circumstances, and can be considered as being on a continuum, an ideal for which to strive – the ICPHR emphasis on seeking maximum participation and collective action based on joint insights (International Collaboration for Participatory Health Research (ICPHR), 2013a).

5.2 | Methods: case study concerning the development of a policy agenda for digital inclusion The project was funded by the poverty director at the City of Amsterdam. Based on a former project with children living in poverty (Sarti et al., 2015, 2017), the first author (CD) was invited to attend a meeting in which choices would be made on how to accommodate the needs of children in relation to digital inclusion. A group of professionals attended the meeting. Many had direct experience with the so-called ‘target group’, and shared ideas on how best to spend the available money. Among others, the idea was to develop educational apps for toddlers and to expand the current free laptop arrangement to young children. Practical questions of what kind of devices children actually need Table 5.1: The seven underpinning values and ethical principles of PHR, as defined by the International Collaboration for Participatory Health Research (ICPHR) (2013) Underpinning value

Explanation

Mutual respect

Developing research relationships based on mutual respect.

Equality and inclusion

Encouraging and enabling people from a range of backgrounds and identities (e.g. ethnicity, faith, class, education, sex, sexual orientation, (dis) ability, age) to lead, design and take part in the research,

Democratic participation

Encouraging and enabling all participants to contribute meaningfully to decision-making and other aspects of the research process according to skills, interests and collective needs.

Active learning

Seeing research collaboration and the process of research as providing opportunities to learn from each other

Making a difference

Promoting research that creates positive change for communities of place, interest or identity.

Collective action

Individuals and groups working together to achieve change.

Personal integrity

Participants behaving reliably, honestly and in a transparent and trustworthy fashion.

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could not be answered, either in relation to school or to their social lives, which was also acknowledged as important. Therefore, the first author along with an industrial designer who had worked with the municipality in the field of poverty reduction, were invited to collaborate in a ‘participatory action study’. While we repeatedly stressed that for participatory and quality purposes we needed to make choices in the so-called ‘target group’, this was not possible. On the contrary, the project design rapidly expanded to not only children, but also to the experiences and needs of their parents; numbers were considered important in order to get the conclusions accepted by the policy-makers. The resulting findings should provide an overview of 1) the problem and needs of families with a low socioeconomic position (SEP) in relation to the quickly digitalizing society; and 2) concrete, and preferably swift, operational solutions. Digital inequality is a complex social problem that transcends several policy domains, in this case poverty reduction, education and welfare, spanning the entire political spectrum, each party with its own – often conflicting – views and agenda in relation to felt responsibility, need and kind of action.

The upcoming elections, 11 months after the start of the project, increased the pressure to profile themselves well – who wants to own a complex problem that defies simple solutions in an election period? This made it even more important to present a rewarding perspective for all policy-makers involved. The budget covered for both senior and a junior researcher (together 0.9 FTE), research materials and some money to reimburse participants for their time. We also pushed for financial support to create an outstanding end product, complete with visuals. Given the complexity of the problem, the political sensitivity and the lack of time, we knew from the start that it was a huge challenge. With the help of an intern, we engaged volunteers and professionals working with families in deprived areas of Amsterdam and, through their networks, we involved parents and children living in such areas. The research question and design were developed by the researchers in cooperation with the policy-makers. In the first phase of the research, we focused on understanding the problem, as experienced by families. We conducted formal interviews with professionals (n=42), parents (n=10) and children (n=3) from five deprived neighbourhoods in Amsterdam, and enlarged our understanding through participant observations, informal interviews and work sessions (Table 5.2).

In the second phase, we focused on co-creating solutions. In total three cocreation sessions were organized with volunteers and professionals (n=64). The findings of the co-creation sessions were discussed in six focus groups: four with mothers (n=21), and two with children (n=30) (Table 5.2). The methodology included several cycles of critical reflection. We started with critical rereading of the journal that we (CD and NG) kept during the research process, comparing the research design and the actual process with the PAR literature and the seven ethical

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Table 5.2: An overview of research activities Phase 1: Understanding the problem

Phase 2: Co-creating solutions

Semi-structured Participatory interviews observations (n=55) (n=18)

Co-creation sessions (n=3)

Mothers

7

45

Fathers

3

20

Children

3

61

Volunteers/ professionals

42*

Work sessions (n=2)

Focus groups (n=6) 21 30

39*

64*

Notes *Some volunteers who were interviewed were also involved in the work and/or co-creation sessions

principles of ICPHR, identifying the main dilemmas and issues encountered. Second, we invited two critical friends (JB and TA) to read a first draft of our manuscript to identify issues and concerns with the process followed. Thereafter, we reflected on the process with the principal and the policy project leader in extended interviews, which lasted for approximately one hour and were transcribed verbatim. During the analytical process, we alternated between (re-)reading of the data and the critical questions, and open coding and final code categorisation was based on the ICPHR ethical principles.

5.3 | Results In order to do justice to the complexity of the process and for the sake of readability, we do not use the seven ethical principles as a grid, but follow the process as it has evolved in practice and the dilemmas we faced. First, we describe the different roles of the participants in the research project. We then describe how the working relationships developed during the project. Finally, we show whether we managed to make a difference. The participants’ experiences, needs and priorities have been published in a policy report (Dedding et al., 2017).

The different roles of stakeholders in the project: democratic participation under pressure Due to the short timeframe, the interest in the policy-makers’ new approach, and the fact that the City of Amsterdam had good working relations in the field, it was decided to work closely together. We met once a week at the municipality (90–120 minutes) to discuss each step and interim findings. The policy-makers accommodated field meetings and attended some interviews and work sessions in order to learn what is at stake for whom, and to connect to other projects and departments. While working, they often reminded us of the (often shifting) focus and (interim) deadlines, as the principal explained: “My

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goal was to catch the momentum in time for the elections.”, and often highlighted this in our weekly meetings: “If we want to submit it to the board in January, a deadline for the report in October is not on time.” [notes 4-07-2017]. Although we often explained that we needed time and flexibility for genuine participation, in order to meet and to build trust with citizens who are not familiar with research and not spontaneously willing to connect with the local government, and to learn what is actually at stake, as a team we all had to stick to these deadlines, after all: “The internal consultation with aldermen cannot be rescheduled […]” [notes 7-07-2017]. Given the lack of time, it would have been easiest and most efficient to invite citizens who are already known to professional organisations, like formal educational training. However, in line with the principles of equality and inclusion, we deliberately chose also to reach people living in deprived neighbourhoods at some distance from official organizations. It was expected that they might be most affected by the digital gap, and at the same time could profit most from technological progress. We adopted no exclusion criteria in relation to language capabilities and no formal group sessions were organized.

With the help of professionals and volunteers, we met people at times and places that suited their practical agendas and needs. Rather than inviting them at times and venues that suited us or clashed with theirs, we respectfully tried to fit our research activities around their schedules. We explained the purposes of the project as ensuring that future interventions and policies would fit their life-worlds and needs, and asked adults and children to share their experiences of the digital world, their needs and ideas for solutions. During the conversations, we actively explored and discussed existing interventions, such as digital training materials and a new app developed by the municipality called ‘understand the letter’. For children, we arranged an excursion to a film museum, where they learned to make a stop motion movie. We planned transport, and used the time to get to know each other and to learn about what is at stake for them. In general, these real-life meetings lasted for one or two hours. During the project, we worked closely with volunteers linked to language and debt courses, some of them with personal experience of living in poverty. They shared their (personal) knowledge and experiences and helped to introduce the project to people living in precarious circumstances.

During all phases of the project we stayed close to one welfare professional in particular, who had worked as a volunteer in her spare time for more than 10 years, to feed into the discussion, and to validate our findings and actions. We analysed the stories using an ethnographic content analysis, ensuring that we kept an eye on the situational context and providing the opportunity iteratively to gain a more in-depth understanding. The stories and expressed needs were shared with a group of policy-makers, educators, volunteers and creative designers in three co-creation sessions in

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order to exchange ideas, connect to what is already happening and to develop innovative and concrete ideas. These interpretations were brought back to a group of mothers to check whether these ideas fit with their daily life, ideas, experiences, and needs. The policy-makers’ idea of investing in educational apps for young children, for example, was quickly turned down by mothers, as they believed this would damage young children’s sight. The app that was developed to help to understand difficult letters was experienced as not user-friendly, and most of all as threatening their personal comfort zone and privacy. However, the idea of developing educational vlogs about the problems they experience was seen as an opportunity some would like to try. We tried to work together with a group of ‘experiential-experts’, who are involved in a three-year schooling trajectory in order to become professional experiential advisers in the field of poverty reduction. We visited the school to explain the purpose of the project and to see whether we could work together. At that time the schooling programme had just started, people were busy making sense of their own and others’ experiences. Some of the students were really enthusiastic about being involved in the project. Unfortunately, we could not fully invest in this relationship due to the mutually inflexible schedules.

We even had to decline a request of a student for an internship, since we could not invest in a proper working relationship (integrity principle). In Table 5.3 we summarize the different roles of the citizens and policy-makers in the different stages of the project. It shows that we did not reach a high level of citizens’ participation, but we did so among policy-makers and, to a lesser extent, volunteers.

Working relations: mutual respect, active and shared learning, equality and inclusion Although in their daily lives participants faced many challenges in relation to the rapidly digitalizing world, we quickly learned that for most citizens the topic was not high on their agenda. Arranging for basic needs, daily concerns, and practical caregiving tasks were more important. Besides, we often had to balance citizens’ feelings of distrust regarding the municipality, ensuring their privacy and that their information could not be used in ways they had not authorized. Rather than making private notes, we wrote on a paper tablecloth so everybody could see our notes and get an overview of the data (see Figure 5.1). Breaking ‘the rule’ of not writing on a tablecloth, and also learning new words and phrases, often created a relaxed atmosphere, helped to build trust and resulted in active and shared learning. We also ensured that the children were having a good time, had the opportunity to explore and expand their skills and to reflect about who we are and why we felt it is important to listen to them. Given the lack of toys in informal day care, we left our research materials behind and later sent them extra items to play with afterwards. The community centre, we closely worked with, received a gift certificate for

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Table 5.3: Roles played by the stakeholders in the different phases of the research project Research phase Role played by the different stakeholders Informing Planning the process and participation

Consulting

Citizens Volunteers

Problem formulation of issue creation Priority setting

Citizens

Search for solution

Plan development

Involvement

Citizens

Collaboration

Control

Researchers

Policy-makers+

Citizens

Policy-makers+ Volunteers Researchers

Volunteers

Policy-makers+ Researchers

Citizens Volunteers Educators Creative designers Policy-makers++

Policy-makers+ Researchers

Volunteers

Policy-makers+ Researchers

Implementation Monitoring and evaluation Notes +Policy-makers of the City of Amsterdam directly involved in the project, ++Policy-makers of the City of Amsterdam who were not directly involved in the project

their investment of time and sharing their knowledge, which they used for their collective food garden. Individual citizens received a gift certificate for sharing their knowledge and experiences in an interview. Different types of knowledge – e.g. experiential, theoretical, practical, intuitive, and emotional ways of knowing – were all used and valued. We familiarized ourselves with theoretical models, such as the multiple access model of Van Dijk (2005), indicating that the digital divide is a product of four factors, namely: motivational, materials, skills, and usage access. While this model turned out to be helpful for understanding the different kinds of access that might be significant, we did not use it as a rigid grid. On the contrary, we sought to familiarize ourselves with the experiences and lives of people, whether young or adult, in their specific context with the scientific theory and knowledge in our ‘backpack’. We did not invite citizens to the co-creation session. Due to time pressure we could not create a respectful and empowering setting for them; it would have demanded extra preparation meetings with citizens in order for them to feel confident, or at least reasonably comfortable in relation to formal professionals. Indeed, two of the four volunteers who

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Figure 5.1: Use of a tablecloth to increase reflexivity and learning

attended later commented that they felt overwhelmed by the dominance of the experts and their lack of respect, which had the effect of limiting active participation and shared learning. Though we tried to mitigate this during the meeting, we didn’t fully succeed. Partly this had to do with the fact that organizations and professionals have to compete with each other for current and future activities; (un)intentionally this increased their need to advertise their added value and ideas to the policy-makers, often overruling the more modest volunteers. The citizens’ experiences, needs and solutions were fed into the co-creation sessions by the research team, with the help of ‘personas’, and verbally explained. Personas – semifictional representations – are often used in the context of industrial design to express and focus on the major needs and expectations of the most important user groups; to aid in revealing universal features and functionality; and to describe real people with their own backgrounds, goals, and values (Guo et al., 2011). Though useful in the context of design, it didn’t feel right in the context of PAR. It was talking about people rather than with people, and it risked over-generalization of stereotypes, often portraying people negatively as passive and unknowledgeable.

Moreover, it increased the risk of side-lining topics which were not considered relevant from the professionals’ perspective. And this might inadvertently have limited the position of the volunteers.

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Making a difference and ‘collective’ action It is not easy to distinguish and articulate the project’s impact since it is embedded in the process, demands time – the scarcest resource in this project – and so could not be evaluated with all stakeholders. However, in order to evaluate whether we managed to bring some of the core principles of PAR into action, we need to look at impact, since action and change is what PAR is about. Therefore, we summarized some of the benefits of the process for the different stakeholders, shown in Table 5.4, in the activities we conducted after the formal closure of the project. Interestingly, Table 5.4 shows a relation between the depth of involvement and impact; the greatest impact was on policy-makers. Nevertheless, the process did open up alternative perspectives and courses of action. Some of the ideas at the start, e.g. to invest in education apps for young children, were not followed up, since they were not welcomed by parents. The urge for action was clearly felt and acted upon by the professionals, the municipality and beyond.

5.4 | Discussion and conclusion With hesitation, we accepted this challenging project and made it as participatory as we could. We had three reasons. First, leaving out citizens’ voices would lead to what is called ‘epistemic injustice’ (Fricker, 2007; Groot & Abma, 2018). Epistemic injustice arises when people are seen as less credible than policy-makers and professionals, leading to single or one-sided views of reality (Abma et al., 2017). Second, it would lead to a situation in which (again) top-down policies and interventions were developed that do not fit the daily reality and needs of people living in precarious circumstances. Third, it would be a missed opportunity to demonstrate the importance of listening to people who seldom have a voice in defining what is at stake and what actions should be taken. The question is: 1) how far did we meet (some of ) the ethical principles of PAR as set out by the ICPHR, and with what consequences? And, 2) is it wise to start a PAR approach under such constraints in the future? We started the project with a strong motivation for democratic participation, equality and inclusion, respect, and collective action to identify needs, to stretch the boundaries of science (if necessary) and to co-create knowledge for action.