Educating Childhood Cancer Survivors: a Qualitative Analysis of Parents Mobilizing Social and Cultural Capital

Abstract

Childhood cancer impacts the child patient as well as the family and caregivers throughout diagnosis, treatment, and survivorship. Secondary analysis of qualitative data revealed the critical role of parents’ adaptability and flexibility when navigating advocacy decisions about their child’s schooling following diagnosis and through survivorship. After cancer, adjusting to school means adjusting to a new normal creating challenges related to curriculum, peers, and educators that can affect quality of life. Critically, parents’ adjustment to a new advocacy role emerged as an important consideration. Concepts of social and cultural capital aid in understanding the experiences of parents whose children have returned to school following their successful treatment for pediatric cancer. Framed in this way, how parents mobilize (or do not mobilize) these forms of capital as they devise strategies to support their children are understood. This study interprets parent reports and actions as taken often in the hope that they will help both their own child and others that follow, creating mutual benefit for the network of people touched by cancer.

Introduction

Childhood cancer and its treatment impact both immediate and long-term quality of life for affected children and their families. As a result, parents face varied challenges in supporting their children as they navigate treatment and survivorship. According to the National Cancer Institute, an individual is considered a survivor from the point of diagnosis through the rest of his or her life; family members, friends, and caregivers are also impacted by and considered part of the survivorship experience. In addition to disease management, survivorship includes the following domains: (1) the physical, psychosocial, and economic issues of cancer, beyond the diagnosis and treatment phases; (2) issues related to the ability to get health care and follow-up treatment; and (3) late effects of treatment, second cancers, and quality of life.

As parents of cancer survivors develop awareness of the ever-existing need to problem-solve beyond the treatment phase, it becomes necessary for them to navigate a new normal that frames a revised expectation of their child’s daily quality of life [1]. For example, many children who survive cancer treatment have outcomes that adversely impact their education. Such adverse outcomes include, but are not limited to, late cognitive effects [2] which can gradually emerge. These impacts can also be a predictor of poor social outcomes [3]. It would seem then, that parents can play an important role in strategically addressing related difficulties as they reconstruct their lives. However, it is not clear what strategies may be adopted or how they are mobilized.

Adverse outcomes have an additional downstream effect on, for example, working memory and organizational weaknesses, which ultimately create learning difficulties for childhood cancer survivors [4]. Other downstream effects include creating long-range health implications for caregiving family members [5]. These impairments can make educational supports necessary for the child, such as more time for tests, access to writing technology, or modified curricula. The educational supports for children with disabilities are governed by the Individuals with Disabilities Education Act (IDEA) and implemented through an Individual Education Program (IEP) or a 504 plan. The IEP is a program that is tailored to the child’s individual educational or learning needs, providing special education supports and services, whereas the 504 plan provides accommodations and changes to the learning environment to meet the needs of the child.

The original analysis focused on school-related challenges among childhood cancer survivors at highest risk for neurocognitive late effects [16]. This secondary analysis focuses on specific strategies parents used to address their children’s school-related challenges associated with these late effects. Interview data (n = 9) and open-ended survey responses (n = 81) were used to more closely examine how families of cancer survivors identify and mobilize supports to address the school-related challenges of survivorship. What came to light were experiences pertaining to quality of life and strategies devised by parents whose children are in school following successful cancer treatment. Interpreted through the lens of social and cultural capital, this analysis emphasizes flexibility and taking action in order to make the best of a situation or resource as situations change. Our findings support that by uniting the concepts of social and cultural capital, we can better understand the key roles they play in parent experiences of managing and navigating survivorship.

Background and Theoretical Framework

Social and cultural capital are concepts that have been used throughout health care and educational research to understand impacts on health. Social capital has its origins in social scientific theory from the 1920s [6]. Social and cultural capital are linked in that they have non-material value [7]. Here, their joint role functions as a theoretical framework that is essential for informing the coding of the data.

Within health care literature, the concept of social capital has become a staple in the discourse of health inequalities which confirms a correlation between the two [8]. A focus on social capital implies that the social networks and communities that a person interacts with influence their health-related behaviors [9]. Not only does social capital impact health inequalities but it may also contribute to health improvement [10].

Although there is no single predominant definition of social capital, there is considerable overlap in how the term is used. For example, Trainor [11] suggests that social capital comprises relationships and networks, and that these structures provide “power in the form of shared capital” (p. 247). Ellison, Steinfield, and Lampe [12] define social capital with an explicit reference to the resources derived from social networks, such as “…emotional support, exposure to diverse ideas, and access to non-redundant information” (p. 873). However, not all definitions capture the nuanced role that social capital plays in achieving a “mutual benefit” [8], which serves to maintain group membership [7]. Importantly, these references to social capital are concerned with social networks, and the quality and maintenance of relationships one has within them.

For the purpose of this study, social capital is understood based on Bourdieu’s theorizing [7], along with the work of others. In combination, social capital is understood as comprising two interrelated characteristics. The first involves relationships and networks that offer benefits for their members that interrupt social inequalities; the second concerns the active maintenance of those relationships with the aim of achieving mutual benefit. The aspect of membership provides a marked transference of social capital between individuals.

Cultural capital includes three distinct forms: (1) embodied, (2) objectified, and (3) institutionalized, that collectively encompass the value of what one has and what one knows [7]. While cultural capital is not widely utilized in health care research, collectively, these three forms carry meaning based on systems of social values and norms [13]. The present analysis focuses on institutionalized cultural capital, which is understood as an individual’s authority awarded to them based on their credentials or qualifications [7]. This can include a college degree, a job title, ora professional credential. Cultural capital has been used, for example, to account for the influence of family background on the school experience [14] and when mobilized, together with social capital, has the potential to reduce social inequalities in healthcare [15].

The theoretical framework of this study is informed by the anthropological work of Trainor [11] who examined data from focus groups and individual interviews with families using the analytical tradition of Pierre Bourdieu. This work emphasized the importance of disability in the acquisition and use of cultural and social capital in educational contexts. Based on parent perspective data, Trainor concluded with an in-depth understanding of the inflexibility of the structural components of special education. Additionally, her findings demonstrate how, while purporting to support home-school collaboration, these structural components in fact serve as barriers. Ultimately, she found that the categorization and labeling of disability constrained parents’ participation in their children’s special educational needs and programs. Trainor offered that social and cultural capital do not derive their theoretical value based on measurement, rather they derive value based on the “ease of exchange” (p. 248) in achieving an outcome and related benefits. This qualitative assessment of exchange takes place across fields, a term that Bourdieu [7] used to describe the domains in which people act, such as medicine, education, and family. How people act and ultimately form meaning in their life, characterized by their dispositions within a field, is understood as habitus. These two terms, field and habitus, play a “significant role in the acquisition and use of capital” (p. 248). Collectively, these concepts shed light on how our secondary analysis of data demonstrates the mobilization of social and cultural capital as a means of impacting quality of life, forming meaning around a new normal for families, and their cancer surviving children.

Methods

Original Analysis: Participants and Data Collection

The original analysis of this data addressed gaps in understanding of caregiver experiences with school-related challenges among children at highest risk for neurocognitive late effects and to inform recommendations for practitioners [16]. Data collection and participation took place over three phases. Phase one involved recruiting parents of childhood cancer survivors in Baltimore and DC area treatment centers. Inclusion criteria were being a parent of a child with a cancer diagnosis that required central nervous system (CNS)-directed therapy, completed therapy, enrolled in school for at least six months before the interview, and received their care at a hospital local to the researchers. CNS-directed therapy includes radiation to part or all of the brain and/or chemotherapy delivered in a manner that will cross the blood brain barrier. Efforts were made to recruit parents of children from a variety of age ranges and level of schooling at time of study participation. Purposeful sampling was used to ensure the group represented the types of diagnosis and different ages (at diagnosis and currently) as stipulated in the inclusion criteria, and that among the group, parents were able to articulate their experiences.

Informed verbal consent was obtained from all individual participants included in the study. After consenting, ten participants (nine parents of cancer survivors and one young adult survivor) were interviewed by the three project PIs about their experiences of schooling after a cancer diagnosis. Nine of the interviews were subsequently transcribed for qualitative thematic analysis (n = 9); the tenth interview was not coded due to equipment malfunction and subsequent loss of data. Member checking and consensus building around themes was accomplished during phase two, via an all-day workshop with seven of the interviewed families as well as other stakeholders from the medical, education, and cancer foundation domains.

The third phase involved the design and administration of an online survey to capture further data from a wider population of parents of childhood cancer survivors. Potential respondents were asked to participate in the survey through multiple dissemination strategies, including social media, foundation emails, and direct recruitment in pediatric oncology clinics [17]. From June through December 2017, data were collected using the online survey. The survey comprised multiple choice and Likert-type questions regarding demographic, diagnosis, treatment, and survivor information, and one open ended question. This question asked the respondent to share any additional information they felt was relevant to their child transitioning back into school. Ethical oversight and study approval were provided by the hospital Institutional Review Board (IRB00126818), and have been performed in accordance with the ethical standards as laid down in the 1964 Declaration of Helsinki and its later amendments or comparable ethical standards.

Secondary Data Analysis

This secondary analysis follows the supplementary analysis typology [18], emphasizing exploration of an aspect of the data not previously addressed [19]. Coherence was maintained between the first and secondary analysis by not conflicting with the original data collection methods [20]. In order to maintain coherence, the secondary analysis team included those involved in the original analysis and an additional qualitative researcher. This additional researcher was not involved in participant recruitment and the original data collection. The survey from phase three was completed by 222 participants of which one third (n = 81) answered the open-ended question. This data had not been qualitatively analyzed in the original analysis. The secondary analysis was prompted by the desire to interpret the combined data of original interviews and written responses through the lens of social and cultural capital.

Rigor and validity were supported through the original audio-recorded interviews being heard alongside the verbatim transcriptions, and MAXQDA was used to capture “representative instances of data” (p. 380) through methodical analysis [21]. Taking a grounded theory approach, the transcribed interviews were reviewed, coded, and analyzed according to thematic instances until patterns were derived [22]. Saturation of data was established when no new codes were identified after all interviews and open-ended questions had been analyzed [23]. All names of participants (parents and children) were anonymized.

Results

In total, the survey resulted in the following ethnic breakdown¹: 79.3% Caucasian, 6.8% Black, 1.4% American Indian Alaska Native, 0.9% Asian, 0.9% Native Hawaiian and Pacific Islander, 3.2% other, and 7.7% did not respond. Survey respondents identified their relationship to the child as 90.9% mothers, 6.8% fathers, and 2.3% other. The median age of children at time of interview was 14 years of age. By combining the open-ended survey responses and interview data, we identified two overarching themes that further elucidated the experiences of parents whose child had returned to school after a cancer diagnosis: social and cultural capital. A key focus of our secondary analysis was to understand the nature of parents’ experiences when their children transitioned into school after surviving cancer, described by one parent as “…being left to go out alone in a lifeboat.” Analysis of the data led to new derivations, concerning how parents support their children’s quality of life as cancer survivors in the school system. Interpreting parent reports through the the oretical framework of social and cultural capital provides a framework for understanding how parents mobilize capital during exchanges of mutual benefit between fields.

Social Capital

Many of these parents, in an effort to support their children, engaged in discussions pertaining to disability support from the schools in which their children were enrolled. The support offered through formal individualized programs or plans such as IEPs, and 504s was unfamiliar territory for many parents. One parent, whose child was diagnosed with a cute lymphoblastic leukemia (ALL) at the age of three, explained during her interview how she obtained advice regarding the legal ramifications of obtaining school support as governed by IDEA:

“… I am lucky enough to be friends with several attorneys who I regularly consulted about [child’s] legal rights. Without this, [child] would have been channeled into an education program he didn’t belong in or would have had his education supports [504] terminated altogether. Experiencing both extremes in a one-year period in a large urban district that has significant special education staff … not only scares me for [child] but for the many other kids out there who lack the supports my family has.”

Unable to independently negotiate for appropriate school-related services for her son, this parent required not just one but several attorneys within her social network to provide legal advice regarding her son’s program. Despite having the option to be vocal in the process of decision making according to IDEA legislation [11], this parent required legal expertise to ensure that involvement was heard. As she reported, this expertise was necessary for providing the capacity that would positively impact the quality of her son’s education. Importantly, she also pointed out her concern for other parents who may not have similar networks, or social capital, that connects them to the legal resources necessary for supporting their own children.

For some parents, their network included family friends whose children had many special needs. As such, their experiences of social capital were significant in providing the information about what sorts of accommodations could be attained. Another interviewed parent, whose son was diagnosed with a brain tumor at the age of two-and-a-half, had difficulty in obtaining the educational supports required when her son began kindergarten.

“…we had a very good family friend whose child, she had two friends that had many special needs and ended up going to special ed school, but she was a huge help initially at talking to me about like these are things you could get for [child]…maybe you should have a keyboard or a computer…she was able to talk a lot about like…the time around homework and [that] those advocates do exist.”

At the time that this parent sought the advice of her family friend, she had been told that her son did not qualify for any services, even so he had experienced hearing loss and had been receiving speech and occupational therapies prior to entering school. This history still did not demonstrate enough impact to receive services. When she was unable to make any progress at the school, she mobilized more ofher social capital in support of her son. She explained:

“I was lucky that the school that he is at, the principal lives in our neighborhood and knows his story. So, he was all about trying to help [child] …we just did a 504 and then he started kindergarten…”

How her child’s story was told in the context of the neighborhood is not significant. What is significant is that it was told and that it created action. Social capital—in this case the neighborhood network of individuals which includes the child’s school principal—was instrumental in mobilizing this story in a context that supported the parent in obtaining accommodations in the form of a 504 plan.

The last example of an interviewed parent report demonstrating social capital concerns a daughter who was diagnosed with a brain tumor at the age of three. When this child was ready to begin kindergarten, her mother took her for admission testing into a private school. She was told that her daughter did not even test at the kindergarten level, and she was not admitted. Concerned, they put her into a public school where she would receive the educational support she needed. Despite this decision, the parent still struggled with how to navigate the educational plans and the curriculum that coincided. As she explained, this is where her social network was able to assist:

“I have a couple of teacher friends, so they kind of give me extra work - like I have the whole curriculum for her for third grade. So, I kind of know what’s going on, as long as the teachers are following [it]. One of my teacher friends is a special education teacher, and he kind of helps me there.”

After getting situated in public school, the survivor was provided with an IEP. Understanding how best to support her daughter through the academic process became a challenge for this parent. She wanted her child to have a fulfilling academic experience; however, she struggled with the language of the IEP process and obtaining accommodations. She supported herself and her daughter by obtaining copies of the classroom material, objects of cultural capital, and the added assistance through her social network. Reflecting on this experience, she advises other parents to “educate yourself on all of the different IEP and terminologies and the system they’re going to use”, so they are better situated than she was when her daughter began kindergarten. In other words, gain the insight of habitus from the field of education in order to be better prepared to mobilize social and cultural capital.

Cultural Capital

In several of the interviews and survey responses, parents described using their qualifications as teachers to help support their own children through survivorship and education. The first, a parent of a 12-year-old boy who was treated for a brain tumor, had the following to say during the interview:

“I had been a teacher eight years before staying at home with my four kids, so I think I felt pretty comfortable being a parent and as from an educator’s perspective regarding navigating the school system … But I kind of knew where to go to get different answers and questions that I had. So, I think that was definitely helpful.”

This mother’s cultural capital was instrumental in finding the information she needed within the field where it was valued, the school system itself. In this scenario, it was helpful for getting the support she needed for her son. Not all encounters with the school were as simple as this first report. Another interviewed parent of a ten-year-old boy shares her frustration with the school system:

“…his teachers have expressed a desire to remove barriers and include him in school, but they needed to be educated by me about his needs, and then work with the school administration to figure out how to support him. Some administrators have welcomed him warmly back to school, and others were clearly scared/nervous about having him in their building. I am a teacher, and so irritated with what the school system was going to offer with home and hospital, that I fought to become his home and hospital teacher for math and science.”

This parent was in a unique situation.She was able tomobilize her qualifications as a teacher not only to educate the school about how to most appropriately manage her son’s needs but also how to teach her child. This cultural capital made an impact on her child’s quality of life as the mother’s “earlier qualifications provided an academic benefit” [7] for her son. Like social capital, there is a desire to use cultural capital to help others. The parent of a brain tumor survivor has the following to say about her experience with the education system and her cultural capital:

“…there’s the parent part of me and the teacher part of me, and I was able to combine those two with [child’s] experience, and I know from meeting other parents that we kind of may have a more atypical experience, because I’ve heard lots of awful stories. So, through this experience, I find that I want to help other people.”

An aspect of social and cultural capital theory is that when either are absent then inequalities begin to present themselves. While the majority of the cases presented here represent those instances where social and cultural capital were mobilized with good results, this does not mean to imply that this is always the case. For example, this parent reported her experience with her seven-year-old son in the survey:

“My son has vision loss and a processing delay, and the school compared that to chemotherapy brain fog. I have yet to get him evaluated for a visual IEP even though IDEA requires the school do that for any student with vision loss. I have tried to turn to volunteer organizations, but no one seems to know how to help me get through to the school. It’s been frustrating…”

Discussion

Results of the secondary analysis suggests that most parents made use of their social capital for two reasons. The first reason was for their own benefit in seeking educational supports for their children. The second was because they were hopeful that other individuals, including teachers, would benefit from their actions. In the parent reports provided, leveraging the external qualities of social capital—membership in a social network that provides benefits—was instrumental in reducing structural barriers to educational supports. This desire for others to benefit includes concerns with navigating the school system, teachers, and the forms of special education available to children with disabilities. One parent who discovered that her son was not getting the support he needed shared her concern for other children: “This has to change…not just for us, but for all other kids that are here.” Another parent, who is also a teacher, shared that her actions would benefit other parents; she was “helping them because they’re not teachers…helping them understand what is available.” Two possible ways to understand parents’ desire to help other families affected by pediatric cancer include: (1) as an act of social justice with the desire to distribute knowledge in a way that others can benefit, and (2) an attempt to minimize the structural barriers to educational supports based on reports of parents of childhood cancer survivors.

Parent reports, examined through the lens of institutionalized cultural capital, suggest how credentials or qualifications helped them to navigate change for improving their children’s quality of life. This is specifically important here because we found parents using what they knew, either with credentials they already had or were obtaining, in order to address the challenges that they and their children experienced. This stands in contrast to social capital where we found parents mobilizing their external networks. And yet, similar to the results regarding social capital, we argue that parents who can draw on cultural capital are also expressing concern for the community in a slightly different way. They do so by their interest and concern for how people who do not have professional expertise to manage and to obtain the support they require. The theoretical importance of cultural capital is that the credentials or qualifications impact future generations in ways that remain unnoticed [11] due to the internalized, personal nature of the knowledge that is being applied. Where social capital is able to be traced through the social network of individuals that have been touched by cancer, cultural capital remains a personal support that is harder to discern.

Our analysis infers an argument that not all people will have the same ability to mobilize social and cultural capital. This is “in part because it relies on the acceptance and application of dominant-group disability paradigms inculcated in school cultures” [11, p 246]. While this qualitative data does not provide insight into what dominant-group disability paradigms are in force in these school settings, it is clear based on the interviews and open-ended responses from the online survey that parents of survivor’s experience childhood cancer survivorship as not being a dominant group in schools. Overall, childhood cancers represent only 1% of all new cancers diagnosed in the USA [24], and although this group is in the minority, the growing numbers of survivors suggest that these issues will only become more relevant for children moving forward.

Conclusion and Limitations

This study provides insight into how parents strategize social and cultural capital inan effort to support their children as they integrate with school after a cancer diagnosis. Through social capital, parents strategize through leveraging external expertise from branches of their social networks. Cultural capital, on the other hand, demonstrates a strategy based on leveraging their internal personal expertise. This study also demonstrates that parents undertake actions in the hope that they will help both their own child and others that follow in their footsteps, creating a mutual benefit for the network of people touched by cancer. The illustrations of social and cultural capital in this study resulted in favorable outcomes that may not always be the case across the range of parents. Some may have to navigate the possible inequalities that emerge from the late adverse effects accompanying childhood cancer survivorship and additional disparities resulting from socioeconomic status.

Within the domain of childhood cancer survivorship, interpreting these parent reports through the concept of social capital provided an understanding of how parents mobilized their networks in order to address the inequalities found in educational supports provided by the schools.

Simultaneously, the data illustrate that cultural capital, exemplified in the qualifications many parents held as teachers, was passed down to their children through either direct educational support or knowledge of the educational field. In doing so, they mobilized the support for the benefit of the child. In this way, the education of these survivors has the potential to be positively impacted as a result of their parents’ transference of cultural capital from the respective educational and family fields.

This study was informed by the previous work conducted by Trainor and the focus on students with disabilities. The results of this study contribute to prior work by elucidating how childhood cancer survivors are a distinct group that make up the wider population of children with disabilities. Understanding how parent reports are situated within social and cultural capital is an effective way of illuminating how childhood cancer survivorship manifests forms of inequality that have the potential to negatively impact quality of life. However, it has been argued that the concept of social capital, while widely accepted, is vague and open to varying interpretations [8]. This issue of vagueness and the limitations it poses is a reason that we took the approach of exploring more specifically how social and cultural capital is leveraged.

This analysis presents the voices of parents, with the voices of the teachers, and the administrators are absent. While interview results of the study corroborated with the bigger picture issues that parents raised, a study combining the views of both parents and teachers would provide another aspect regarding social and cultural capital in the education of a childhood cancer survivor.

Furthermore, not all online survey respondents answered the optional open-ended question. This suggests that only those motivated to tell their story were heard, and those stories were more often about a problem or challenge.

Minority parents were underrepresented in the survey respondents, which can be problematic as childhood cancer strikes all ethnic and racial groups. In total, 20.7% of respondents were from non-white/non-Caucasian backgrounds. This underrepresentation speaks directly to the well-documented racial and socioeconomic health disparities that exist in cancer overall [25]. For some populations and schools which already serve a high proportion of students from underserved populations, mobilizing their overtaxed resources may be problematic. While this study focused on education after treatment, future research is important for exploring how social and cultural capital impacts the quality of education from diagnosis through survivorship. Additionally, further study is needed to understand how social and cultural capital impact families dealing with other, non-educational related challenges of childhood cancer, and how those who lack these types of capital are able to manage—or not.