Abstract
Structural inequities influence young parents’ access to health care, housing, transportation, social support, education, and income. The current study adds to the extant literature by providing data directly obtained in collaboration with young parents to understand how structural violence affects the health and well-being of their families, ultimately resulting in community-driven policy recommendations developed in collaboration with the state health department. We engaged a diverse sample of young people—considered as community researchers in the project—including Black, Latinx, and/or LGBTQ+ pregnant and parenting young parents in a participatory action research (PAR) project in the spring of 2022 to explore their health and material needs while living in Springfield, Massachusetts. Together with young parents, we used participatory arts-based methods to conduct community and identity building, define research questions and photo prompts, conduct data collection (photos), engage in group thematic analysis, and take action at the state policy level. We also conducted individual semi-structured life-history interviews with the young parents. Participatory community-led findings indicate an urgent need for systemic change to increase access to safe and affordable housing; living-wage jobs; safe, high-quality, and affordable child care; and to bolster social support and disabilities services for young parents and their families. This participatory study funded by a state health department demonstrates that participatory community-driven data can have the power to mobilize community members and policy makers for social change if prioritized at the state and local levels. Additional practice-based implications include prioritizing participatory mentorship programs intended to aid young parents in navigating the complex systems that are vital to their survival.
Almost a decade ago, Barcelos and Gubrium (2014) noted the shaming, stigmatizing, and silencing features of research and policy making conducted on young parents: Pregnant and parenting young [people] are one of the most disparaged groups to capture the attention of policymakers, educators, health and human service providers, and the public writ large. They are also simultaneously silenced and made hyper visible by the political, social, and moral narratives of teen childbearing in the United States—narratives that are raced and classed in particular ways (Pillow, 2004). While [young parents] are at the center of a research and policy agenda that seeks to explain and prevent early childbearing, their voices are largely absent (Barcelos & Gubrium, 2014, p. 1).
Young parents are loosely defined as individuals who become parents before the age of 25 (Sick et al., 2018). As of 2013, more than three million young parents were living with their children (Sick et al., 2018). Young parenting has been linked to intergenerational crime; low economic status; “unfit” parenting; and adverse early life experiences and infant brain development (Macvarish & Billings, 2010). Young parents, particularly those from racialized and minoritized backgrounds, are classified as having made poor moral choices (Conn et al., 2018), and their assumed reliance on public assistance is cast as morally inferior (Froggett, 2002) leading to public health interventions focused on re-educating individuals (Cook & Cameron, 2015) to make better “choices.”
Numerous studies indicate that young parents, particularly those from racialized and marginalized backgrounds, report experiencing judgment, hostility, and stigmatization from various sources and in different forums, including receiving judgmental stares and name-calling from strangers, being passed over for employment, and discrimination in health care settings (Owens, 2022; SmithBattle, 2013; Whitley & Kirmayer, 2009). A series of interviews conducted with young parents (aged 16–25 years old) from diverse backgrounds revealed that all participants reported experiencing some degree of perceived discrimination and/or judgment directly related to their intersectional identities of being young parents (Conn et al., 2018). Recurring themes from the stigmatizing messages described by young parents included ageism, lowered expectations for social mobility, assumed limited parenting abilities, and being a “burden” to society (Conn et al., 2018). While there is much critique of young parents at various levels, far less attention is paid to how discrimination against young parents, particularly those from racialized and minoritized backgrounds, at different structural levels (e.g., policy, education, health care, public assistance) may contribute to poor outcomes for them and their families.
Structural violence refers to a form of violence wherein social structures or social institutions harm people by preventing them from meeting their basic needs and has a profound influence on the lives of racialized and minoritized young people (E. O. J. Lee, 2019). For young parents in the United States, structural violence influences their access to health care, housing, transportation, social support, education, and income (Chetty et al., 2020; Goessling, 2019). The limitations that structural violence impose on young people are often perceived as natural because they are embedded in the current social, political, and economic fabric (E. O. J. Lee, 2019). It is important to understand the structural challenges racialized and minoritized young parents face because many of these challenges continue into adulthood or affect the transition to adulthood.
Racialized adolescents who have children while in high school face particular obstacles to completing their education as they must balance their complex needs as a student with the needs of their children. Indeed, only about half of mothers who have children in their teens have adequate support to finish high school (Center for the Study of Social Policy, 2015). For instance, many schools are not equipped to address young parents’ needs for flexible hours, alternative courses, and on-site child care (Aron & Zweig, 2003).
Young parents often struggle to find stable, affordable, high-quality child care that meets their scheduling needs and is a major determining factor of young parents’ success in school and ability to join the workforce (Sadler et al., 2007). Although policies are designed to provide child care assistance to low-income parents in employment, most parents do not receive it because of limited funding, inadequate subsidy rates, administrative barriers, or eligibility requirements (Gennetian et al., 2004). Young parents who have low-wage jobs because they did not complete high school may also work nonstandard hours or have irregular work schedules that they have little control over, making it even more difficult to find suitable care (Enchautegui, 2013; Sandstrom et al., 2012).
With regard to socioeconomic outcomes, a matched-pair study comparing teenage mothers to non-teenage mothers who were similar with regard to their educational attainment and receipt of public assistance found that teenage childbearing was associated with lower high school and college graduation rates, lower wages, and increased likelihood of receipt of public assistance (D. Lee, 2010). Worse economic outcomes for young parents have been demonstrated to last for at least 10 years, suggesting that teens who give birth will experience income disparities into adulthood (Gibb et al., 2015).
Young parents are eligible for a variety of public benefits; however, data show that reach may be limited. The most recent analysis of young parents' data in the National Survey of Income and Program Participation (SIPP) from 2013 indicated that the most frequent source of public benefits for young parents was food and nutrition assistance (Sick et al., 2018). Supplemental Nutrition Assistance Program benefits were received by 42% (1.5 million) of young parents. Assistance from the Special Supplemental Nutrition Program for Women, Infants, and Children was received by 23% (0.8 million). Housing assistance (housing vouchers and rent subsidies) was received at least once in 2013 by only 14% of young-parent households. Despite the presence of young children, only 5% of young parents received child care assistance. Four percent or fewer of young parents received benefits from Temporary Assistance for Needy Families, transportation assistance, unemployment or worker’s compensation, or general assistance. The average annual amount of individual cash assistance benefits received was $3,800.90. Nearly half (43%) of young parents did not receive any of the above benefits (Sick et al., 2018).
While there are older cross-sectional and longitudinal studies that have explored the role of structural violence in the lives of young parents (Gibb et al., 2015; D. Lee, 2010; Sick et al., 2018), there is a need for contemporary understandings of the lived experience of structural violence on the health and well-being of racialized and minoritized young parents. Here, we present findings from a participatory action research (PAR) project that centers the voices of young parents in articulating their health and material needs as well as their hopes and desires. Participatory approaches are essential tools in identifying upstream issues and exploring the human condition (Goessling, 2020; Wallerstein et al., 2019). The current study adds to the extant literature by providing data directly obtained in collaboration with young parents to understand how structural violence affects the health and well-being of their families, ultimately resulting in community-driven policy recommendations. It is our hope that these community-led findings will be used to shift punitive programs, policies, and initiatives that further perpetuate young parents’ everyday struggles and are linked to health inequities and social inequality.
Theoretical Underpinnings
The culture centered approach (CCA) is useful for understanding and addressing health inequities experienced by marginalized and racialized young parents because the barriers they encounter are rooted in systems of social inequality and marginalization (Dutta, 2008). Originally articulated by Mohan Dutta, the CCA calls for the “voice of the community [to be] central to the articulation of health problems and corresponding solutions” (Dutta, 2008). The CCA notes the erasure of marginalized community voices from dominant structures and seeks to interrupt knowledge production by co-constructing meanings of health and social issues through dialogues and participatory knowledge exploration with community members at the margins. The CCA considers three overlapping components: (a) local and dynamic cultural contexts of health; (b) structural factors, which both constrain and facilitate human agency, and, through a deep analysis of social inequality, politicize the endeavor of public health research; and (c) community member agency, which is predicated on a dialogic/process-oriented approach that engages participants as co-researchers and co-constructors of knowledge, while prioritizing the voice of the community-member-as-researcher (Dutta, 2008).
In the CCA, the roles of researcher, as expert interventionist, and participant, as a vessel for public health information, are reconfigured to shift power dynamics away from the status quo and promote dialogue, and center participants’ cultural knowledge and expertise. This approach aligns well with the tenets of participatory research, which shows that involving community members who are the focus of research throughout the entire research process enhances the identification of the research topic, the research process, and the impact of findings (Dutta, 2008; Wallerstein et al., 2019). Originally conceptualized and operationalized to empower grounded public health communication for social change (Dutta, 2015), the CCA has since been used extensively to explore and address health disparities both globally and in the United States. Relevant to our study’s focus on structural violence and young parents, the CCA and participatory methods have been used in areas such as constructions of motherhood and sexual and reproductive health with young mothers (Basnyat & Dutta, 2012), and structural barriers affecting immigrant and racialized communities (Gao et al., 2016; Palmer-Wackerly et al., 2020).
Method
Setting
The PAR study took place in the Springfield Metropolitan Area, which includes the cities of Springfield, Holyoke, and Chicopee, Massachusetts. The area has a diverse population with indicators of high social inequality and health inequity. Residents of Hampden County, where the Springfield metro area is located, experience teen birth rates at almost double that of the state (17 vs. 9 per 1,000), with the highest rates in Springfield (25 per 1,000; Baystate Medical Center, 2019). Residents of the Springfield Metropolitan Area also experience social inequality, including lower educational attainment/access, housing, transportation, and food security (Baystate Medical Center, 2019; City of Springfield, 2006). Compared with the statewide rate of 10%, 23% of Springfield residents aged 25 or older do not have a high school diploma (Baystate Medical Center, 2019). More specifically, 34.5% of Latinx residents and 16.9% of Black residents in Hampden County have not completed high school (Baystate Medical Center, 2019; City of Springfield, 2006).
We partnered with a local community-based organization in Springfield, with which we already had an established relationship, to conduct the project. The organization runs a young parents’ program on-site at their downtown location, including weekly educational and support group sessions, and eagerly offered to allow the research team to run weekly sessions at their community site to engage their clients in the PAR project. Additional project activities were conducted in public spaces including, but not limited to, community/neighborhood centers and parks.
Recruitment + Consent, Participants
Our community partner was responsible for community-based recruitment of participants using multiple methods: (a) personal and group-based invitations from organization staff; (b) flyers and pull-tab pages at the organization; and (c) community partner social media outlets (e.g., Twitter, Facebook, Instagram, SnapChat, and TikTok). Advertisements provided interested individuals with information about the study, related payment, and a phone number to text if interested. To combat the digital divide and reach people without access to the internet, we also used chain referral sampling, in which participants were encouraged to invite others who meet study inclusion criteria. They were screened by the research team to determine eligibility. The research team contacted each potential participant with an email or text that included study disclosure information, including the required consent form via Docusign (available in English and Spanish). Eligible participants included individuals: (a) of all genders; (b) older than the age of 16; (c) who attained parental consent (if younger than age 18) and provided assent to participate in the project; and (d) who identified as a young parent. The study received human subject approval from the university Institutional Review Board.
Participants of the study included 14 young parents aged 21 to 33 who identified as Latino/a/e (Puerto Rican, Mexican, Dominican) (n=10), white (n=3), and Black (n=1). Ten participants identified as women and four participants identified as men. Half of the participants were partnered and the other half were single parents. Participants had between one and four children, with most parents having at least two children. All had experienced varying degrees of housing, food, and transportation insecurity, and at least half had been diagnosed with behavioral health issues, and/or were parenting children with disabilities and/or behavioral health issues. Most participants had been involved with child protective services as children, and/or had been investigated by child protective services as parents. All participants had become parents as adolescents and had lived experience of structural violence as they navigated various social service systems. Thus, the inclusion of older participants allowed for a more comprehensive perspective of navigating systems as a teen and transitional-age young parent (aged 15–24) over time.
Procedure
We conducted 10 PAR sessions, meeting weekly for 120 min with participants at a local community organization that serves young parents. The organization provided child care services during the PAR sessions as well as US$50 gift cards for attendance at each session. We offered transportation (bus passes, cash) for those who needed it. We also provided a warm, delicious, and nutritious dinner to participants and their children and to the organization and research staff in the first 30 min of each session to cultivate community building for the project.
Photovoice
We used Photovoice as a primary research method during the PAR project. Photovoice is an accepted participatory action research and health promotion strategy for conducting research with historically marginalized and racialized communities (Wang et al., 1998). The process provides participants-as-researchers with the tool of photography and narrative storytelling related to photographs to research, identify, and represent their own lived experiences and important issues in their communities (Nykiforuk et al., 2011). Photovoice workshop facilitators support participants in actively reflecting on, and naming, their own experiences while contributing to the development of the group’s critical consciousness by analyzing issues embedded within their photos using the SHOWED method. The SHOWED method uses verbal or written questions to help participants develop a narrative to describe their photograph [What is Seen here? H: What is really Happening here? O: How does this relate to Our lives (your life)? W: Why are things this Way? E: How could this image Educate others?] (Wang & Burris, 1997; 15). Participants use their SHOWED narratives and identify proposed solutions/actions to address these issues (Tsang, 2020; Wang et al., 1998). Photovoice has been used to explore a variety of health topics at multiple levels of assessment and intervention and is an appropriate method to examine the health and material needs of racialized and marginalized young parents (Roberts et al., 2022).
The 10-Week PAR Sessions
In the 10-week PAR project, academic researchers-as-facilitators guided participants through a series of activities adapted from the youth participatory action research (YPAR) Hub (YPAR Hub, 2015), including identity building, community mapping, and Photovoice ethics and methods. YPAR Hub is hosted by University of California Berkeley and features expansive curriculum and adaptable lesson plans for community organizations, schools, and researchers interested in conducting participatory projects with young people. Sessions 1 to 2 focused on orienting them to the project and identity building. Sessions 3 to 4 included community mapping of safe and unsafe spaces. Session 5 involved an introduction to Photovoice, and the development of the first Photovoice prompts by participants, which were “silver linings” and “unsafe spaces.” Participants were instructed to take as many photos as they wished, but due to time constraints, were limited to three photos to share and discuss with the group. SHOWED questions guided them in writing short narratives for each of their selected photos. During Session 6, after completing SHOWED narratives for each of their selected photos, they participated in a group debrief to present and title their photos and then to discuss their photos and SHOWED narratives with other group members, as the photos related to structural dynamics in their community. Sessions 7 to 9 focused on discussing systemic issues related to housing, mental health, education, access to services, and disability. Based on their discussions of these topics, participants devised a prompt to guide their second photo-taking expedition: What are the big picture issues that affect our health? They engaged in another photo expedition, SHOWED narrative writing activity, and debrief session. Participants assigned meaning to their own photos and then, together with the group, identified emergent patterns and themes in common experiences and phenomena. Session 10 included a group thematic analysis and action planning session. All sessions were audio recorded with participant permission.
Action Phase: Community-Based Forum
We worked with participants to plan a community-based forum in Springfield to present findings on the health and materials needs of young parents, meant to inform policy making and practice. In collaboration with participants, we presented the themes identified in the group analysis and action planning session. Three members of the Massachusetts Department of Public Health attended, listened, took notes, and provided feedback to participants about their plans to use the findings to improve relevant systems (e.g., housing, transportation, disability services, food access, and child care subsidies).
Fieldnote Writing
Graduate research assistants (GRAs) and the co-Principal Investigator wrote field notes in and around the PAR program activities. Field notes focused on the PAR process and general observations about participant discussion and themes arising from the research.
Individual Interview
A 1-hr, semi-structured, life-history interview (Adriansen, 2012) was conducted with 9 of the 14 participants after completing the PAR program. Five participants were unable to participate in the individual interviews due to competing priorities and time constraints. Interviews were conducted by a co-Principal Investigator, recorded via Zoom, and transcribed verbatim by a research assistant. The life-history interview used by Adriansen (2012) is a process wherein participants physically draw a life timeline on paper. We adapted this method from a written process used to a verbal process for the Zoom interviews. Participants were asked to think about their life as if it were a book and to divide it into chapters. The chapters were defined by the participant but often were circumscribed by life events or developmental stages (childhood, adolescence, and pregnancy). Participants received US$50 for taking part in the individual interview.
Data Analysis
We used an inductive approach using CCA and participatory analysis by which to explore the role of structural violence on the health and well-being of young parents (Dutta, 2008; Tsang, 2020). We used a multi-phase analysis of multiple sources of data, including Photovoice and narrative data, PAR discussion sessions, and participant interviews.
To examine salient themes that arose in the participant-produced photos, qualitative methods were utilized in a series of four steps. The first step involved an emic (e.g., insider’s)/participant analysis of the Photovoice data described above. Each participant selected one to three photos to present from their photo expedition for each photo session, along with titles and SHOWED narratives to share with the larger group. Thus, a total of 48 photos were selected and discussed by the 14 participants using the SHOWED narrative approach across Sessions 5 through 9. Together during Session 10, academic researchers and participants conducted an inductive analysis of the photos, narratives, and discussions and identified and documented emergent themes related to the prompts and developed corresponding definitions (Tsang, 2020).
Second, we conducted an etic/academic research team inductive analysis of data after the completion of the PAR sessions, wherein we reviewed the photos, SHOWED narratives, and transcripts of recorded group discussions for salient themes relating to structural factors influencing the health and wellbeing of young parents (e.g., housing/transportation/food insecurity, racism, ageism, and sexism), as well as what other themes may be at play (e.g., mistrust by social service systems; Bernard, 2017).
Third, the two study co-principal investigators and three research assistants independently reviewed and generated themes from transcripts of the participant interviews. The research team then conducted another level of data analysis via weekly team meetings on Zoom. We explored and identified emerging themes within individual cases and then across the data sources to consider how identified themes played out across the corpus of data (Bernard, 2017).
Fourth, the two study co-principal investigators and three research assistants compared emergent themes across the data sources (i.e., Photos, narrative data, PAR sessions, interviews) to consider how identified themes played out across the corpus of data. Through these data explorations, the research team developed a preliminary list of codes for organizing the data, and then finalized a codebook with detailed description; inclusion and exclusion criteria; and typical, atypical, and close-but-no exemplars for each code to guide data coding (Bernard, 2017). To determine intercoder reliability, research assistants coded two session transcripts and then compared the results (Bernard, 2017). Each subsequent transcript was coded using NVivo software.
Fourth, the academic researchers conducted a triangulation of themes that emerged in the emic and etic review of the Photovoice and narrative data, and the PAR discussion sections. We used a thematic content analysis approach to examine key themes emerging in the data as they related to structural dynamics surrounding these themes by generating reports by code or groups of codes, summarizing the main ideas expressed by participants, and identifying new patterns within each theme (Bernard, 2017). Subthemes arose during both emic and etic analysis. The combination of group discussion and Photovoice data integrates a critical approach to YPAR analysis with traditional qualitative research practice (Tsang, 2020).
Results
Salient themes indicate the ways that structural violence plays out in the lives of young parents, including gentrification and housing security; lack of safe spaces to raise their families; lack of living-wage jobs in the face of rising housing and child care costs; and raising children with disabilities in a materially deprived and mistrustful system.
Gentrification and Housing Insecurity
Participants spoke at length about the difficulties they face securing housing for their families. Several had experienced homelessness and had lived in shelters. They expressed frustration that most shelters accept female-identified parents and children but do not accept male-identifying parents, which means that male-identifying individuals are separated from their children. Moreover, the bulk of the caretaking is left to mothers, and fathers can become estranged from their children in the shelter system.
One participant, who was shy to speak aloud, wrote notes about her experiences over the course of a dialogue session. She handed her notes to a co-PI at the end of the session, which described difficulties experienced with housing security and parenting. The shelter system in place is supposed to support people but instead, it is punitive and tears families apart. She made the following demand: “[Make] shelters more available to two parent households and [provide] more shelters in general, and accommodations for medical needs.”
Participants also noted that housing waitlists are years long, despite the visibility of empty buildings downtown. One participant’s photo titled “Casino” and corresponding SHOWED narrative (Image 1) illustrates how the city prioritized spending money on a new casino, instead of maintaining, treating for asbestos, or building new affordable housing units to address the housing crisis in the community.
Especially when the casino came in, everything [housing costs] just went up. . . Buildings above right there. All those are probably empty. . .that could’ve been housing right there. Shelters. You also have to think about health factors as to why can they do that, a lot them have asbestos. . .things that need to be treated before anyone can actually live in. But the question is, why not do it? And then they let it sit. Wanna know why? Because as I said before, there’s personal agendas and people don’t want to cough up money for things that don’t benefit them. But the people like. . .put in a casino, but no housing. Right smack in downtown. . . And then getting down to the people who actually need it [housing].
Casino.
Safe Spaces Are Hard to Come By
Participants reported that safe spaces in Springfield are hard to come by, and for many, outside of their financial means. Some had successfully moved their children to safer places, while others reported living in places where they did not feel safe. One participant noted: I put my house and my in laws’ [in the community map], because I moved from Springfield, like my Springfield house was like, really toxic and stuff. And me and my partner, we don’t want to raise our child in that environment. And we were living with my mom. We moved to [nearby city] because his mom lives in [nearby city]. And their lives, they came from like the ghetto, a bad neighborhood. And they worked really hard to get to where they don’t have to raise a child in that type of environment. I saw how they lived. And I was like, you know, we wanted something like that. So, we decided to move to [nearby city]. And it’s not easy, you know, having a safe space, because there’s a lot of barriers to get there. Because it’s really hard to find an apartment, it’s really expensive where we live, . . .it’s like a mortgage, we’re paying for our rent. But it is our safe space. . . I can take her in the backyard without feeling like. . . For example, I was driving here and there was gunshots. . . I live close to, not far enough away, where I feel safe.
Participants strove to live in safe spaces, especially to protect their families and reduce stress in their lives. This translated into their wanting to leave their community (Springfield), where they had grown up, because other places were considered safer—notably, without gun violence and active users of substances roaming the streets, especially near schools. Yet safer spaces also come with challenges, as participants described feeling socially disconnected from their family and community after moving, as illustrated by the following quote: The neighborhood I live in now is a lot different than where I used to live. I kind of miss where I used to live because . . . I talked with my neighbors but it’s not like now. . . Now it’s so quiet where I live. . .
“Damned If You Do, Damned If You Don’t”: (Underpaid) Jobs and the Struggle to Afford Child Care and Housing
Participants talked about working at jobs that do not pay enough to afford safe and secure housing. They reported living paycheck-to-paycheck to afford a homeplace where they could feel comfortable raising their children. One participant described their struggle to work, and afford child care and housing: It’s one of the things. . .it’s really hard to get out. I’m not saying it’s impossible, we were blessed with really good circumstances that enabled us. . . We looked so hard for an apartment, like it is so hard in our apartment, we can barely afford it. Like we afford it. We’re thankful that he got a new job and he’s getting raises. I work in childcare, you don’t get paid very well. I couldn’t even pay our rent, childcare, nothing by myself if it wasn’t for him paying for everything. I would literally be living at my mom’s house stuck in that toxic culture.
Participants reported that they were damned if they did have a job—because it often did not pay a living wage, but they also lost access to food, child care, and housing benefits because they went over a certain income threshold. One participant commented: It’s hard sometimes. Because it’s like, yeah, I can go to my mom’s house. But I don’t want to be taking, it’s hard for her too. So, I don’t go over there. Even when it comes to work, like when I was working here for about a year or two, it was hard because you had to manage living there and getting food. So, it was difficult, you either gotta choose work or like you have nothing. Right now [I’m not working]. Lately it’s just been trying to manage the money I get to get groceries for my house. [Which leaves you with like what?] Maybe not even a hundred at most. . . .That’s where all the money goes. The main thing I do is my bills first, and then I figure out what I need to do to get for my house, but it’s difficult with housing.
One participant spoke of working as a paraprofessional in the Springfield School District, with others commenting that they would like this type of job as well, but that the pay was not high enough to provide and care for their children. Others worked as low-paid child care providers. Participants were also damned if they did not have a job—they received subsidies but were scraping by, even with strict budgeting. Juggling child care and quality of life for their children, some participants chose not to work as they felt that this was their best course of action, a strategy for family survival with the best outcomes.
Likewise, for child care, participants noted that they are “damned” if they had jobs—because they could not receive vouchers for child care—and damned if they did not have jobs—because the vouchers that were available are difficult to obtain and the child care options are perceived to be of low quality, particularly so for children with disabilities. Some participants were employed in low-wage jobs that could not afford them child care but whose salary put them above the threshold for subsidy eligibility, while others could not work because they did not have child care and were on waiting lists for child care vouchers. One participant put it: “I’m not lacking enough to get what I need” through subsidies. Continuing, she said, “I’m trying to work, but I can’t work because there’s a tapped voucher program for child care.” In discussing child care, participants also felt that decision-making around who receives vouchers and who does not was largely up to the discretion of service providers, with seemingly rigged policies used to determine who received them. One participant told a story of seeking to obtain a child care voucher and being told by the service provider to “tell them you had sex in [another country]” and that the father of the baby could not be found, thus she would be considered a single mother and would be able to obtain a child care voucher. The participant was not a single parent and indeed partnered with her child’s father, and as such, was not eligible for the child care voucher despite meeting other income requirements.
Living With Disabilities in a Materially Deprived and Distrustful System
At least half of the participants disclosed living with a disability and/or parenting children with a disability. They reported a number of structural barriers to raising children with disabilities, including facing significant difficulties getting accommodations at schools for their children as well as securing safe housing and transportation. One participant described the transportation barriers for families with disabilities in her photo (Image 2) and SHOWED narrative below: This is a picture of my son in a battery-operated car. I have epilepsy. . .it is extremely difficult trying to find services to get you from like point A to point B. . . I have to talk to my doctors about it, but when I go and make that phone call to a van company—I have to find out if my son is able to travel with me ‘cause if my son is not feeling well and I need to take him to the doctor’s and nobody else is around, my child needs to travel with me. I’m told that some of these companies, they won’t allow you to do that, and it makes no sense
Participants discussed the implications of raising children with disabilities in a materially deprived and distrustful system. They expressed frustration that services to receive diagnoses were both expensive (upward of US$4,000) because the state public health insurance would not cover the cost, and often required traveling over 2 hr.
Battery Operated Car.
Children’s behaviors played into how participants were perceived as parents by outsiders (e.g., schools, health care, society) and sometimes led to the Department of Children and Families (DCF) being called. Participants spoke of feeling always under surveillance, under investigation by the systems (schools, DCF, health care) meant to support them. One participant described this experience with their child’s school: And we already have a history with the school where our relationship is combative between us parents in the school. Where they didn’t give my son the proper resources that he needed to accommodate his episodes and those kinds of things, his sensory emotional sensitivities. And they started to take that tension between us, and spirit towards my kids. . . Like they even called DCF to my house, because my son had an episode where he like, opened the car door while I was driving, and I had to grab him and pull him back in and pull over. But in [my son’s] perception, it was, “oh, you grabbed me, and you scratched me.” So that’s where he went to school and said that I was being abusive. And they took that, that miscommunication, even though it says in his record that he’s an inaccurate reporter, they didn’t take that. They didn’t even let me know or contact me what the situation was . . . DCF came, they did this whole big case, or whatever. But then found out that the school didn’t have enough resources to accommodate his condition. So, in reality, it wasn’t me, it was the school.
One participant noted that support services should be “out there more, nobody knows about them unless you dig in to find out. They don’t offer them to you, you have to find them by yourself.” Participants reported finding such services only after a long chain of referrals, rather than finding out about services upfront.
Discussion
Findings from this PAR study with young parents confirm what is becoming generally accepted in the field: that structural violence exacerbates inequitable health outcomes and that future research should focus on identifying effective systems-level interventions to address or mitigate its effects (Bluthenthal, 2021). The participatory narratives and photos presented here center the lived experience and amplify the needs of marginalized young parents, and contextualizes existing cross-sectional (interviews, surveys) and longitudinal data about the influence of structural violence on the health of marginalized and racialized communities (Gaitán, 2021). These findings echo results from a previous participatory study conducted by the same authors on the role of structural violence on historically marginalized youth, which found that young people from historically marginalized groups (LGBTQ+, racialized and minoritized youth, undocumented/recent immigrants), face difficulty accessing housing, transportation, food, the internet, and health care (Valdez et al., 2022, 2023). This participatory study funded by a state health department demonstrates that participatory community-driven data can be used for advocacy efforts by community members and policy makers for social change, if prioritized at the state and local levels. Indeed, the following points are recommendations developed in collaboration with young parents and have been shared with the MA Department of Public Health to shift punitive programs, policies, and initiatives that further perpetuate young parents’ everyday struggles and are linked to health inequities and social inequality.
Participants fervently expressed that safe and affordable housing is a basic need and right that should be guaranteed to all people, including young parents and families. Many of the precarious issues (e.g., exposure to violence and separated families) mentioned by participants would be mitigated if young parents had access to affordable housing where they and their families felt safe. Research shows that when people are securely housed that other systems and structures come into place—they are better able to focus on obtaining living-wage jobs, high-quality child care, and higher quality public schooling for their children (Gaitán, 2021). Housing should not be at risk if participants do obtain a living-wage job, and they should not be punished for obtaining secure employment by losing access to benefit eligibility.
Living-wage jobs and the provision of safe, high-quality, and affordable child care are basic needs for all families, including young parents and families (Banerjee et al., 2021). Participants spoke of unreliable child care options, especially for infants, which were often linked to the contingencies of subsidized child care and the current shortage in child care providers due to the COVID-19 pandemic. The voucher/subsidy system was described as narrow and one-size-fits-all, largely determined by financial contracts and siloed funding initiatives. The “essentials”—formula, child care, living-wage jobs, housing—should be offered through a wraparound and connected system, rather than asking young parents to work with individual organizations to receive discrete supports and services. As it stands, accessing supports and services is a full-time job for young parents living on the margins.
With regard to supporting families with disabilities, it is critical that historically marginalized families have accessible and affordable support and diagnostic services. Our findings indicate that many of the participants with children with disabilities also had diagnosed disabilities themselves. Promising results from a randomized control trial of an intervention to increase adult services for parents of children with autism showed an increase in parental knowledge about such services, advocacy skills-comfort, and empowerment (Taylor et al., 2017). More research and funding are needed to better support parents with disabilities.
Participants also noted how much time and energy was required to identify and engage with resources, despite being involved with various community organizations and public services. They also reported feeling like they were not trusted by social service and health care providers. Thus, increased outreach and referrals across systems (schools, pediatricians, and social service organizations) should be prioritized for all public assistance services. Given the tenuous access to transportation, child care, and funding, service providers should focus on bringing services to the families most in need. This may include providing services in centralized locations (libraries), mobile units/home visitors, and partnering with organizations to provide child care while families receive services (Kaeding et al., 2017; Sapiets et al., 2021). Indeed, economic supports such as transportation assistance, child care subsidies, and tax credits as well as social supports manifested as coaches, peer support, or participation in community organizations, can help young parents focus on building skills that lead to long-term success (Mosle & Patel, 2012). Thus, barriers to such services should be removed as much as possible to best meet young parents where they are at.
Finally, we suggest developing a community navigator system that works across systems (i.e., housing, food security/WIC, schooling, health care, DCF) to provide wraparound support and services for young parents and families. The community navigator system should employ individuals from the communities they serve with lived experience navigating the aforementioned systems. However, we also note that reforming already broken systems is not going to adequately address structural violence and inequity. “The master’s tools will never dismantle the master’s house” (Lorde, 2003). The systems in place need to be torn down and rebuilt using an abolitionist framework that centers the autonomy, agency, empowerment, and wisdom of members of racialized and marginalized communities (Polikoff & Spinak, 2021).
This study has a number of strengths. Both PAR and the Photovoice process were community-led, and thus represent the perspectives and experiences of the population most affected. Importantly, Photovoice is appropriate for people who may not be comfortable with written/ verbal expression, thus allowing for a greater range of perspectives and contributing to the generalizability of the findings. We acknowledge the limitations of our study. We restricted the Photovoice debrief sessions to 60 min, which limited the depth and breadth of the discussions. Finally, for the safety of participants, they did not photograph human subjects without their consent, illicit activities, or unsafe spaces. Consequently, these restrictions may somewhat compromise the ethics of the “voice” in Photovoice because they could not photograph freely. For instance, participants developed the prompt and conceptualized “unsafe spaces” as places that they did not feel safe navigating, including schools, health care settings, DCF, and neighborhoods. We asked that they use their discretion to take photographs in spaces, and that if a space were not safe (e.g., a street known for crime or gun violence) that they could photograph something representative of this theme, without taking the picture on location. As such, they had the option to take metaphorical pictures instead of physical pictures, which limits the illustration and depiction of their perceptions.
Footnotes
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Research reported in this publication was supported by the Family and Youth Services Bureau in the Administration for Children and Families of the Department of Health and Human Services, grant #1901MASRAE.
Ethics Approval
This study was performed in line with the principles of the Declaration of Helsinki. This study was declared exempt by the University of Massachusetts-Amherst Human Subject’s Protection Program-Institutional Review Board.
