Introduction

Estimates state that between 0.5% and 1.7% of the human population is born with intersex traits or innate variations of sex characteristics (VSC), which occur when one’s chromosomes hormones and/or sex anatomy do not fall within medical classifications or social norms of male and female (Blackless et al., 2000; Carpenter, 2020; Office of the High Commissioner for Human Rights, 2019). Since the mid-twentieth century, medicine has sought to enforce a sex binary through surgical or hormonal interventions, often using a concealment model that failed to fully disclose information to caregivers, encouraged them to withhold it from their children, and/or did not support parents in accepting and co** so they could share their children’s medical histories (Karkazis, 2008; Money, 1983; Reis, 2009; Zieselman, 2020). Intersex advocates and activists have objected to this approach, citing shame, stigma, and attempts at erasure as their painful legacy (Chase, 2003; Davis et al., 2016; Orr, 2019). In the United States, the mental health and psychosocial needs of people with VSC and their families have only recently been included in the standards of care for people living with VSC (Lee et al., 2006, 2016). Despite having the clinical training and social justice mandate to serve this community, clinical social workers have not played a leadership role this conversation.

General lack of awareness regarding diverse sex development and a paucity of educational resources about VSC engender stigma and contribute to physical and mental health disparities (Van De Grift et al., 2024). People with VSC experience higher than average rates of social isolation, depression/anxiety, suicidal ideation, and healthcare avoidance and lower degrees of medical and self-empowerment (Rosenwohl-Mack et al., 2020; Wang et al., 2023; Zeeman & Aranda, 2020). Many have undergone painful and damaging “normalization” surgeries to which they did not consent, including removal of external genital tissue, internal gonadal structures, or surgical relocation of the urethra and/or vaginal canal. (Carpenter, 2018; Chase, 1998; Filippelli, 2021; Pagonis, 2015). These procedures differ from gender affirming procedures because they are performed prior to a child’s ability to communicate their gender identity and/or their assent for surgery. They are often an effort to achieve gender and sex confirmation by achieving a genital cosmesis that aligns with the sex determination decided upon by doctors and parents. While an increasing number of VSCs are identified pre-natally, many VSC’s are learned of at birth and others at the onset of puberty. Regardless of the child’s developmental stage, caregivers of children with VSC demonstrate confusion, social isolation, and traumatic stress upon learning of their child’s variation (Boyse et al., 2014; Delozier et al., 2019; Pasterski et al., 2014). These challenges are rarely responded to first with a medicalized (often surgical) response aiming to “normalize” a child’s body, rather than with de-stigmatizing peer support and psychosocial capacity building. Community and professional calls for improved psychosocial peer support (Anonymous, 2021; Baratz, 2015; Bennecke et al., 2015; Ernst et al., 2018) are being responded to globally by programs such as InterLink in Australia (Hart, 2023) and InterConnect in North America (InterConnect, 2024), among others, but barriers to caregiver access persist (Chivers et al., 2017).

Academic interrogations in medicine, critical psychology and bioethics are well underway (Carpenter, 2018; Feder, 2014; Hiort et al., 2022; Liao, 2022; Roen, 2019) and clinical social work as a discipline has been all but absent from the global conversation. Our biopsychosocial approach and social justice mandate uniquely suit us to assist in development and sustainability of support for caregivers of children with VSC in micro and macro settings. Framed within a critical social work paradigm, this study incorporates a critical examination of systems of power and engagement in liberatory research methodologies. It presupposes that social norms and definitions of sex and gender are environmental factors that impact the lives of people with VSC, that critical consciousness is necessary for group liberation and that as clinical social workers working with this population, we must prioritize global dignity-based practices (Abimbola, 2023) promoting parental empowerment in service of better quality of life outcomes for children with VSC. This stance applies also to research methods and program implementation, which calls for participatory research, co-production principles, and self-reflexive awareness of the history of power dynamics in the history of our field (Allan et al., 2003; Ferguson, 2013; Fook, 2003; Healy, 2001; Morley et al., 2014; Rossiter, 2011).

This article presents the preliminary thematic findings of a qualitative study conducted in the United States that used Interpretive Phenomenological Analysis (IPA) to explore the experiences of parents of children with VSC. These findings will contribute to the development of the Project LISTEN (Let Intersex Stories Teach, Enlighten, and Nurture), a novel peer-delivered intervention founded on concepts of hermeneutical repair and operationalized through liberation health praxis in social work.

Description of the Parent Study: Project LISTEN

Project LISTEN aims to support caregivers in the early stages of learning of a child’s VSC via three domains of parental empowerment in healthcare: knowledge of VSC biology and the social construction of gender, reduced sense of stigma through peer support, and development of communication and advocacy skills (Ashcraft et al., 2019; Scranton, 2024). A preliminary intervention blueprint was developed through a two-phase study design; Phase 1 used IPA to elicit the lived experiences of caregivers of children with VSC and Phase 2 applied principles of co-design (Bush et al., 2019; Larkin et al., 2015; Minkler & Wallerstein, 2008) and Intervention Map** (Bartholomew Eldredge et al., 2016) to develop a program blueprint.

Positionality Statement

As an educated, white cisgender woman working as a clinical social worker in the United States, I had only a passing academic awareness of VSC when I learned of my own child’s variation, shortly after her fourteenth birthday. It became immediately clear that my clinical training was no match for the unexpectedness of this news. In an attempt to adjust and learn, I read voraciously and tried with mixed success to connect with as many resources as possible. The professional literature reflects consensus that people born with VSC and their families benefit from “support” but include it as a “direction for future research”, resulting in a frustrating lack of progress in evidence-based intervention development and implementation.

Over a ten-year span marked by intense effort and significant travel and expense, I have met fellow parents of children with VSC, hearing stories like ours and others with different experiences but similar concerns. I have been fortunate to be in a financial position to travel to a different American city every summer to making and sustain these deeply personal connections. After my child decided to openly share her story outside of our family and selected friends, I volunteered in support groups and online spaces, found community where it was possible, and took a role in a hospital as the family support clinician on an interdisciplinary pediatric specialty team for children with VSC. Fueled by frustration over lack of support programming and financial barriers to equitable access, and accompanied by a growing sense that my positionality may be an asset, I entered academia to complete a doctorate in clinical social work.

Combining our family’s lived experience with my clinical skills and research education leads me to ask heretofore unasked questions about “what heals” in the provision of psychosocial support for caregivers and children with VSC. What does such care look like? Where should it take place? Who will it serve? What will it entail? Who will it reach and how would we ensure access it? How will it be measured or evaluated? These unaddressed research questions must be answered with the needs of the community as formative influences. My role as an insider researcher provided me access to a marginalized group of parents of children with VSC and adults with VSC who were eager to share their insights about what helped them and/or what they wish would have existed to support their own parents many years ago. Their authenticity and strength made this project possible, and their trust has directed me to research methods that center human dignity and prioritize lived experience and its legitimacy as knowledge.

Theoretical Orientation

People with VSC encounter challenges not only to identity, but to their very existence. Miranda Fricker’s concept of epistemic justice provides a theoretical foundation for understanding how power dynamics produce and reproduce existential disparities among VSC (Bhakuni, 2023; Bhakuni & Abimbola, 2021; Kidd & Carel, 2017; Wardrope, 2015). Theories of epistemic justice interrogate systemic inequality and power by focusing on who in society has access to knowing and to the production of knowledge which are necessary for defining, understanding, and asserting the self. A historic omission of people with lived experience of VSC has resulted in their marginalization and has more recently fueled calls for greater representation of people with lived experience in research and dignity-based practices in global health (Abimbola, 2023; Bhakuni & Abimbola, 2021). Shared global definitions of social work incorporate epistemic justice implicitly in their prioritization of social justice, empowerment, and liberation (IFSW, 2024). In a US context, clinical social work’s principles as put forth by the National Association of Social Workers support the centrality of epistemic justice via stated commitments of the profession, including dignity and worth of the person, the importance of human relationships and an ethical responsibility to foster social equity, promote programs that support opportunity for all, and respect difference (National Association of Social Workers, 2017).

When a person experiences a gap in a significant life experience due to a lack of access to social power or shared understandings, Fricker (2011) describes their experience as one of “persistent and wide-ranging hermeneutical marginalization” (p. 154) that results in the social and internal experiences of a group only allowed to exist as defined by interpretations of the dominant group. This concept has been successfully applied to understandings of gender diverse groups (Fricker & Jenkins, 2017) and adults identifying as having intersex traits/VSC (Carpenter, 2023; Hart & Shakespeare-Finch, 2021; Merrick, 2019).

Although people with VSC defy them, biologically deterministic notions of sex represent “controlling images” (Hill Collins, 2022) with the social power to define identity; they effectively crowd out the possibilities for bodies to credibly exist in other ways, making medicalization more likely. Coined by Pohlhaus (2012) as “willful hermeneutical ignorance”, this refusal by those in positions of epistemic power to incorporate the knowledge and lived experience of a marginalized group results in a “contributory injustice” that must be responded to both on the level of the individual (Fricker, 2007) as well as in efforts promoting social justice (Falbo, 2022) for the broader marginalized community.

Project LISTEN aims to facilitate epistemic agency in caregivers of children with VSC by engaging in dignity based research practices (Abimbola, 2023) to empower caregivers through acquisition of content knowledge, peer connection, and development of communication and advocacy skills. To ensure an intervention meets the needs of its intended community, experts by experience must be included at each stage of program development and implementation (Dotson, 2014; Pohlhaus, 2012).

Methodology

To gain a rich understanding of the experiences of parents of children with VSC, I chose interpretative phenomenological analysis (IPA), a method that requires deep attention to get as near to an understanding of a lived experience as possible, listening for how participants make sense of important life events or circumstances (Smith et al., 2022). IPA has been used increasingly in healthcare research with under-examined populations, as the phenomena in question are often emotionally complex and not routinely described in the literature (Peat et al., 2019). IPA is an established research method in health care (Biggerstaff & Thompson, 2008; Brocki & Wearden, 2006; Dixon-Woods et al., 2006) and has been utilized previously in analyses of accounts of lived experience of VSC for parents and adults (Chivers et al., 2017; Freda et al., 2015; Hart & Shakespeare-Finch, 2021; Zeiler & Wickström, 2009).

IPA is positioned within respondents’ socio-cultural contexts and goes beyond descriptive phenomenology to center the hermeneutic circle which results from the researcher’s interpretations and sense-making of participants’ making meaning of their own experiences (Smith et al., 2022). Its incorporation of researcher reflexivity into the analysis improves rigor while retaining attention to nuance. This is essential to the trustworthiness of the study due to my insider status in the group of parent participants (Berkovic et al., 2020; Brannick & Coghlan, 2007; Chavez, 2008). Social work’s ecological understanding of phenomena holds that they are not isolated to the people experiencing them but reverberate to those in proximity. IPA offers a robust multiperspectival design that helps us consider the ways that adults with VSC and parents of children with VSC interface with psychosocial support and how their perspectives inform intervention development, advocacy initiatives, and improvement in patient-centered care (Larkin et al., 2019). Here we will focus on findings from parent interviews, as the cross-sample analysis of adults with VSC goes beyond the scope of this manuscript.

Data Collection

Following IRB approval through the University of Pennsylvania, participants were recruited through purposive snowball sampling, beginning with flyers shared in person at the annual InterConnect support conference in July 2023 as well as online in several Facebook parent support groups. To meet criteria, parents must have had knowledge of their child’s variation for at least 3 years and have had some prior connection with support. All interviews were scheduled and conducted over Zoom in August and September 2023.

I conducted 22 semi-structured interviews with a purposive sample of intersex adults (n = 11) and parents of children with VSC (n = 11) to capture lived experiences of parenting and being parented in the context of VSC, perceptions of the medical establishment’s approach to VSC, and the impact of psychosocial support on overall wellbeing. Participants we were also asked to reflect on the features of psychosocial support that they received, observed, or would have found helpful, to make recommendations for future program development.

The interview guide was developed and used to begin in-depth dialogues and in accordance with IPA, was flexible enough to allow participants to discuss topics that I may not have anticipated (Pietkiewicz & Smith, 2014). As a psychotherapist, I found IPA’s style of interviewing as a natural fit: posing open ended questions, probing for richness of explanation or emotion, allowing for silences, and attending to non-verbal cues from participants are clinical skills that served me well in data collection.

Analysis

Interviews were transcribed and anonymized prior to analysis and averaged 80 min (range 50–100 min) and were read through as they were conducted to preserve the idiographic nature of each interview. While IPA was already chosen as an analytical strategy, this was revisited upon receiving an overwhelming and immediate response for interviews that would yield a sample too large to be suitable for IPA. Because the voices and expertise of adults and parents of children with VSC are rarely requested, I decided to adjust my analysis strategy rather than turn anyone away (which I realized in retrospect was an act of epistemic repair). I granted interviews to anyone meeting criteria who scheduled an interview prior to September 30, 2023, the end date for data collection.

After consultation and research regarding this dilemma of gathering more data than is suitable for IPA, I chose to combine two analytic strategies. IPA was undertaken with 4 cases in each group and template analysis (TeA) was applied to the remaining interviews (King, 2024; Miles et al., 2014). While IPA and TeA arise from divergent epistemological traditions, they have been paired successfully in an effort to ethically treat an unexpected volume of phenomenological data (Bond et al., 2021; Brooks et al., 2015; Larkin, 2022). I applied IPA analysis to the four interviews representing the broadest experience with support communities to remain consistent with my focus on intervention development.

Transcripts were printed in hard copy and analyzed by making exploratory notes regarding objects of concern before noting descriptive, linguistic, and conceptual statements (Smith et al., 2022). Taking each interview as its own case first, I drew out personal experiential statements which were clustered and placed in a table to develop group experiential themes (Table 1). After noting was complete, group experiential themes were derived through cross-case analysis with the four transcripts; an analytical log was kept to track my reflexivity throughout the process, detailing my decision-making and emotional reactions.

I then developed a template from all themes which were applied to the remainder of the caregiver interviews. It was noted that amongst the parents, three for various reasons had prior knowledge of VSC prior to their birth. While they describe similar experiences, they did not share the unexpectedness and resulting isolation that other parents endorsed prior to connecting with support. Their interviews were nonetheless valuable and will be re-coded once again and analyzed for a subsequent manuscript.

Results

Four salient themes comprise our focus for this manuscript: (1) isolation and uncertainty (alienation from self); (2) search for information (seeking for self); (3) reassurance in community (reconstitution of self); (4) skill-building/consolidation (recognition and application of self).

Table 1 Group experiential themes and subthemes: Parents of children with VSC
Full size table

Theme 1: Isolation and Uncertainty (Alienation from Self)

In expressing the isolation they felt, parents described profound uncertainty and frustration at a lack of medical information, the silence they experienced as distance from their child and from themselves as parents, and from the celebration they were expecting would come with the arrival of a new baby. The origins of stigma are also evident as parents detailed their earliest memories:

P2: “So we had (our baby) at a big hospital- it’s very well thought of- not like in the middle of nowhere. And no one seemed to have any information. We just wanted them to tell us something but all they ever did was sort of look around at each other. I guess no one wanted to be wrong or take a guess about what was going on, but something would have been nice!”

Many parents endorsed this frustration, and several recounted the grief, isolation, and early experience of stigma, as they were “robbed of the joy” that other parents feel in those first hours and days after the arrival of a new baby:

P3: In the beginning I had no support, I mean, like the first few days after she was born! We found out later that people kind of avoided me in the hospital just because nobody knew what to say to me, and nobody really knew how to guide us.

This deep internal sense of being isolated was mirrored in the physical space of medical spaces, in which many parents perceived the discomfort of hospital staff leaving them feeling shunned and deprived of the celebrations they anticipated:

P4: Not a lot of people were coming to visit, doctors coming in talking to you from really far away, almost like you had a disease. And you know how they used take baby pictures at the hospital, back in the day - It was there, like the hospital photographer, well, hers never came out. I think they didn’t know whether to put a blue blanket on her, or a pink blanket. We never got to have that moment.

These early experiences fueled parents’ fear about the child’s welfare and doubts about their ability to adequately care for the child, fueling a disconnection from notions of who their child was and would become. Lack of information, access to language, and knowing that “this is even a thing that can happen” is an early manifestation of parents’ hermeneutical marginalization. Without words, concepts, or frameworks to understand their experiences, they are deprived of the ability to comprehend and derive meaning from their situations. During this time, participants describe an alienation from themselves, often citing symptoms consistent with traumatic stress, such as lack of memory, numbing, social isolation/withdrawal, overwhelm, and confusion. Not feeling able to share the experience can result in extreme isolation, as P4 describes her loneliness: “I don’t think anybody ever asked me how I was doing, you know. Ever”.

P2: There was this shroud of silence. Having had all the pre-natal tests, we were surprised to have the surprise, you know, at birth, so that made it even more like. Oh, my God! There must be something hugely wrong! This is not what we had expected. And as first-time parents you know, I don’t know if I’ve forgotten this or just sort of blocked it out…. But for the first month I kind of checked out. I mean, I was just sort of like, I gotta figure out how to feed this child. But it wasn’t just that, though. I mean, I think part of it was like, to my partner …if you want to learn more about intersex…you get in touch with the organization- you do all that. I just had a baby. I’m like, overwhelmed, you know what I mean?

As parents described their passage from darkness, disorientation and overwhelm to finding or creating a “path forward that has some speed bumps”, many each describe a sense of not having been fully aware or appreciative of how difficult things had been, how their needs were not being met, or how shut down they were.

P2: My partner and I once talked about our experience for the first, maybe, month or so, was like being in an airplane, and the oxygen mask comes down …for us, it was like, okay, before we even think about how we’re going to do anything else…we’ve got to figure out what we need and what information we’re not getting and where to find it before we can even think about that next step.

While many parents described an overt search for information, when they began recounting their “origin stories”, each commented on realizing they did not have what they needed, but also not knowing what that was at the time, let alone having confidence that they would find it.

Theme 2: Search for Information (Seeking for Self)

Because for most parents the possibility of a person develo** with VSC was previously unknown, they shared the importance of having a clear understanding of their child’s variation, its etiology, and any associated medical implications. Some parents who had a family history of a particular VSC may have had more content knowledge and preparation than parents who were “surprised by this surprise”, but all participants commented on wanting more information and the accompanying relief they felt despite not having been able to articulate what it was they were searching for.

P2: A few days after the baby was born, my partner actually found (a parent from the support group) and spoke with her the next day. So we ended up getting our own information faster than we really got any from anyone at the hospital. So that was kind of bizarre. One of the very first things she said was, you know, congratulations on your healthy baby, I mean, she literally was the first person to say that.

While parents reported they were “looking for information” about their child’s variation, they reflected on the felt the power of connection with a peer parent who could relate to their experience and provide expertise and guidance in that context. While the content knowledge was important, they were looking for “self” and its components: the power to know and be known, and to be prepared to participate competently in the care decisions and their medical and psychological impact on their child. They describe an additional awareness of the previously unrealized reality that there are “many ways bodies can be” and that their family’s experience is their truth and has meaning.

Theme 3: Reassurance in Community (Reconstitution of Self)

Each participant noted the palpable relief upon their first interaction in community with another caregiver of a child with VSC, whether over social media, email, list-serv, or in person.

P4: I remember that first call that I got from (a support group volunteer). She had been on vacation, but she called me right back, and it was just nice to talk to somebody. I wasn’t as so alone. I mean she just, you know, made me feel like, okay, my daughter will grow up to be okay. It’s okay.

While participants did endorse finding immense value in connection, not all families experienced immediate ease in the initial connections, with most reporting trepidation.

P1: When I told my mom I found the (support) group online, she said, “Why would you want to talk to people online?” Well where I was gonna to talk to people? But now she’s been to several of the conferences and loves the group, and all the people, but at the beginning she’s like, why would you talk to strangers? And I said, “Well, who am I gonna talk to? Only strangers know what I’m going through”.

The connection that parents found together with peers was fueled by a conscious need to learn more from those “who have lived it before us” and allowed them to rebuild a sense of confidence in themselves as parents, reconstituting the aspirational self they once took for granted.

P2: And she said, you know there are a lot of resources… you’re not alone. I mean, it was very much like “you got this” without sugar coating it. It’s not like she was all rosy, and you know, my partner definitely walked away, feeling like, you know, it’s okay- we’re gonna be fine. But I don’t think that we even realized until she said that to us that none of the doctors were saying that. Do you know what I mean? My partner said, “you know… this woman doesn’t even know us…she is saying all this to us”. You know what I mean? That was big. That was really big.

Being in community at peer support meetings provided a sense of safety that many parents endorsed, often accompanied by a sense of relief that seemed to catch them off guard, especially when observing other children with VSC:

P1: From the minute like I stepped on the airplane to go there to the minute I stepped off the plane, I think I cried like the whole time, because it was just the first time that I could 100% talk about my child. It wasn’t filtering out anything. It was just amazing, seeing all of the kids and pre- teens and everybody running around. It was like, Oh, my, gosh, okay, we’re fine. We’re fine.

Seeing a way forward was much more of an option in community and helped ameliorate the isolation that some parents were less aware of until after meeting others with VSC, which had a powerful healing impact.

P3: When we went to our first (support group) conference, the one thing that stayed with me forever: was a girl- I don’t even know her name, and I’ve never seen her since. Maybe she was 21 or 22. She came up and she asked if she could hold my baby, and she’s holding her, and she said to me, I just wish that I had a parent who was like you guys who came to one of these meetings and showed interest in all this after they found out about it. I’m cheering up thinking about that because I thought how lonely it must have been for her. She grew up in a time where the doctors told her parents to hide it. Don’t say it. Don’t tell her, don’t tell her what you know. Don’t talk about it, don’t own it. And this young woman said, “I think I would have been a way different person if someone in my life owned it”. That stuck with me to own it always for my kid, because I don’t ever want her to think that we were ashamed or embarrassed.

In her interaction with a young adult with a VSC, this parent was allowed to imagine a path forward for her child, and she projected her own love for her child into the future and could see how helpful her understanding, acceptance, and pride would be in supporting her child to grow up with confidence. She felt more assured that she “has what it takes to be a good parent”, quelling her initial fears. P1 indicated a similar growing sense of self-efficacy and sense of identity as a competent mother that she was eager to share with others: “When my child was young, I would cry as I was rocking her to sleep worried about what her life would be like…and now I know that all you have to worry about is loving that child. They need love and snacks and that’s all they need. So just worry about that right now, and the rest will come”.

Theme 4: Skill Building and Consolidation (Recognition and Application of Self)

In describing their acquisition and integration of content knowledge, understanding, and peer connection, parents begin to demonstrate hope for the future and self-confidence not only as “good parents for this kid”, but as helpers for others. They recognize themselves as competent caregivers, see themselves in others, and in connection with community, find places to enhance their skills. Experienced parents distinguished between medical information and emotional connection and support, and while feeling the need for both, feel well-positioned to offer lived experience as comfort while expressing frustration that it is not easier to find one another.

P4: It’s disappointing that things haven’t changed much. I remember saying to my daughter’s doctors during her pre-teen years- hey- If there’s every other parent who wants to connect, please give them my name or number- I’m here. No one ever did. You know, I don’t know if they’re afraid that I would say something wrong or something? Granted, you know I’m (not a doctor) …but it’s just knowing you’re not alone…and don’t tell me that there aren’t other people out there in this metro area, you know…I would have been happy to help. But I don’t know if it was some hospital rules or something, but… boy, if someone had just offered me some support, I would have been grateful.

Parents also began to share the elements of either personality or structural advantages such as education and access to technology that served them well, recognizing that some families may need extra support in those areas; several participants seemed to almost surprise themselves in considering how things may have been different had they not occupied some domains of privilege, stressing the importance of building access into any future program development.

P2: I think about if (my partner) and I had been people who perhaps weren’t as educated as we are or weren’t as assertive as we can be…it could have been a complete nightmare. Right after (the birth) the personnel kept changing! Not that long after the baby was born, we got a new OB, then a new pediatrician 4–5 h later, then a new nurse and a new tech, and they all kept asking the same questions, and we were like, you know, read the chart!! We’re tired of repeating everything, and no one giving us any feedback. So it was frustrating. Really it was scary, but it was also very frustrating. Finally, (my partner) said, “You know, we’re not repeating any of this anymore. Everyone has taken notes. Take a look at the notes! That’s when he started doing his own research- thank goodness he brought his laptop and is kind of a tech type guy!

The value of advocacy and knowledge acquisition is significant for this caregiver, and while the family was still in the very early days, P4 reflected on the power of peer support in hel** her assert herself in ways that allowed her to advocate and protect of her child.

P4: I did learn a lot from the couple of the early conferences when she was a couple of years old. I remember- the doctors would come in and then the medical students would come in, you know, and go through all the questions again? And no, I already answered those. I’m not gonna do it again. The doctors would say, “Well, they’re just trying to learn”. Well, I understand, you know, but I’m not going through it again. It’s painful to me, you know? So I did learn a lot about how to stand up for myself from the support group, because I’m kind of an introvert, you know, I just do things by the book. And I I’ve had to learn to be an advocate, and I’m probably not even the best advocate around. But you know, like, no. we’re not doing that. No.

Many participants shared memories of the lasting impact of their first time meeting other families. P1 shared after her first support group meeting, “I came home a different parent. It was like, Okay, we’re fine. We’re fine. This group is gonna get us through”. For many caregivers, the relief they experienced and the confidence and empowerment they gained informed their decision to become more involved in supporting others.

P1: For me, it’s been nice working with families that are just starting out to say, look, we survive. We’re good! I think it’s like they say about teachers. Right? If you can teach it, you learn it more. You know yourself more intimately. And so I think, supporting others has definitely been a huge part of my process and just being secure and comfortable with the path we are choosing.

Discussion

As part of the larger Project LISTEN study, we interviewed the parents of children with VSC and used IPA to understand their experiences of and needs for psychosocial support. We identified four preliminary themes: (1) isolation and uncertainty (alienation from self); (2) search for information (seeking for self); (3) reassurance in community (reconstitution of self); (4) skill-building/consolidation (recognition and application of self). Together, these themes surfaced a developmental process through which parents experienced the initial trauma of learning that their child had a VSC, resulting in the loss and renewal of a sense of self.

Participants experienced various forms of isolation and overwhelm that was assuaged predominantly via access to and connection with other parents of children and with people with VSC of all ages. In community settings, parents were able to ease their fears, re-establish confidence in their identities and find their voices in ways they had not previously been able to. Many spontaneously offered the sense of satisfaction derived through “being there for new parents” or “hel** out the way that people helped me”. They offered insights, regarding the value of intergenerational peer support that had not previously been reflected in the literature.

While participants were not asked during interviews to “tell a story”, per se, their accounts created a collective narrative arc organized around “before and after” they learned of their child’s variation. In their descriptions of the world as they understood it “before” they learned of their child’s variation, they shared their assumptions about sex and gender, planning life around the baby “we thought we were having”, and the shock of learning that “this could even happen”, followed by the worry about their baby’s health and social development. In Theme 1, parents described their experience of isolation after learning of a child’s variation but “before” connecting with peers or adults with VSC. Their experiences of isolation, uncertainty, and loss of self speak to the power of stigma as a barrier to fully connecting with others (Crocker, 1999; Goffman, 1986). Finally, they shared their initial ambivalence regarding peer support.

During the interviews, though parents were not prompted describe their first connection or meeting with a peer, it is notable that each one referenced this connection as a pivotal moment in their experience. Once a participant described the encounter, the interviewer did probe for elaboration, emotional recollections, and significance, but the initiation was fully spontaneous and organic. My interpretation after the cross-case analysis shows that after learning they “were not the only ones”, parents describe their first interpersonal connections as demarcation between dark and light, from feeling “adrift” to “like we were finally home”, from worry and feeling to “we are going to be ok”, from secrecy/shame and to openness/joy, from anxiety to relief. Many participants reflected on only recognizing their “befores” when they were safely situated in the “afters”. Because this sample was comprised of parents who had availed themselves of peer support and were thus both providers and recipients of such care, this perspective is a valuable confirmation of their hermeneutical marginalization; they spoke to “not knowing what we didn’t know” and the transformative nature of being in the company of those who “get it”. While these concepts of validation and belonging are not new in the peer support literature (Klein et al., 2019), this study illustrates how it can lead to critical consciousness necessary for parental and self-empowerment. When people are subjects in their own self-definition rather than objects whose identities and futures are defined by norms established by dominant power structures invested with testimonial power, they have the “right to say and to have a say” (Breton, 1994, p.26).

The caregiver experiences captured here can be mapped onto extant principles of posttraumatic growth, in which an experience that one deems overwhelming can eventually be understood as opportunity for personal development (Hart & Shakespeare-Finch, 2021; Tedeschi, 2018). While the unexpectedness of learning of a child’s VSC can be challenging, caregiver interviews directly reflect outcomes consistent with posttraumatic growth principles: recognition of emotional strength, deepening of relationships with others, increased appreciation for life, and spiritual growth (Tedeschi & Calhoun, 2004). Thus, we can complement the robust extant literature on clinical approaches and peer interventions that facilitate posttraumatic growth, including the desire to help others (Calhoun & Tedeschi, 1999) with our newfound understanding of lived experience to propose a blueprint for a multi-dimensional psychosocial support intervention for caregivers of children with VSC that will provide access to information, opportunities to strengthen communication and advocacy skills, peers to support empowerment and continued growth.

Limitations

Despite the usefulness of IPA and its suitability for health research with marginalized populations, it is important to acknowledge limitations of this approach. Participants comprised a non-probability sample recruited with snowball methods. Voluntary response bias may have impact on participant decisions to self-select into the study. IPA’s focus on idiographic accounts necessitates small sample sizes which prevents our results from being applied to a broader context. It relies on the researcher’s interpretation of participants’ meaning-making, creating a hermeneutic circle which is not representative of any one participant account or generalizable truth (Smith et al., 2022). While not a limitation per se it must be acknowledged that as an insider researcher, my lived experience of the benefits of peer support cannot help but be reflected in my interpretations. Lastly, a combination of the time-consuming nature of IPA, compressed timeline, and lack of funding for a social work doctoral dissertation introduced an analytical limitation- namely that the noting and analysis was done by one researcher rather than a pair.

Implications for Clinical Social Work

Project LISTEN was conceived out of my own lived experience, my curiosity about how and why caregivers of children with VSC access or eschew psychosocial support, and my interest in develo** programming responsive to their demonstrated needs. It is primarily concerned with providing repair for the hermeneutical injustices that prevent caregivers from making an important social experience intelligible to themselves and others. Prioritizing lived experience as knowledge is central to both its research methodology and its program development and eventual implementation.

This research highlights social workers’ potential to partner with lived experience experts to facilitate caregiver empowerment. Whether in academic research or direct practice with individuals or groups, clinical social workers can “disrupt and expose systemic patterns of oppression and exploitation” (Falbo, 2022, p.357), which is arguably a central goal social work praxis. This could take place in the therapy room by supporting a new parent exploring their fears and hopes for their child’s future, with a couple discussing developmentally appropriate ways of share information about VSC with their child, or sitting with a young adult deliberating over when to confide in a new partner. It could also be in running groups, conducting professional trainings, teaching in academic social work programs, and taking opportunities to educate our colleagues in professional settings and the general public in everyday conversation. Our professional clinical social work principles of dignity and worth of the person, ethics of self-determination, and social justice advocacy (National Association of Social Workers, 2017) uniquely position us to partner with caregivers of children with VSC to increase health equity and improve quality of life.

As collaborators in co-designed research leading to attuned clinical training, program design and implementation of interventions, we can ask better questions and begin to redress the harmful impacts that testimonial injustices have had on this marginalized and historically invisible community. While not erasing the challenging impact that a VSC can present for families, clinical social workers can play a pivotal therapeutic role in psychotherapy or medical settings. Family access to comprehensive psychosocial care, empathic peer support and education and opportunities for skill building is essential for epistemic repair. Clinical social workers are well-suited to foster empowerment for caregivers with the aim to improve overall wellbeing for children with VSC and their families.