Abstract
Albinism is a genetic condition caused by a lack of pigment in the eyes (ocular), with some forms of albinism also affecting pigmentation in the hair and skin (oculocutaneous) (Federico & Krishnamurthy, 2023). People with albinism have hypopigmentation, typically resulting in blonde, strawberry blonde, yellow, or white hair; light to white skin; and light-colored eyes. Individuals with albinism experience some degree of visual impairment, including photophobia, refractive errors (astigmatism and myopia), and nystagmus (Federico & Krishnamurthy, 2023). Global albinism prevalence estimates range from 1 in 4,000 to 1 in 15,000 people, with greater underestimation error among populations of European descent (Kromberg et al., 2023). Both visual impairment and physical appearance may contribute to students with albinism having differing school experiences than their nondisabled peers.
Belonging and Inclusion at School
A sense of belonging is related to feeling accepted, noticed, welcomed, befriended, and loved (Carter et al., 2016). These themes are critical in supporting children with disabilities and their families. Although many families report that their children with disabilities are happy to go to school (Gasteiger-Klicpera et al., 2013), they still harbor fears of social isolation in inclusive settings (Leyser & Heinze, 2001). Carter et al. (2016) suggest that institutions focus on deepening relationships with families and children in order to bolster feelings of belonging.
Parents of students with disabilities report spending excessive amounts of time accessing resources for their children due to a lack of help from or negative experience with professionals (Leyser & Heinze, 2001; Sanderson, 2023). In order to support feelings of belonging in children with disabilities, their families need similar prioritization (Carter et al., 2016).
To learn more about belonging and inclusion, researchers are turning to parents of children with disabilities (Scorgie, 2015; Gasteiger-Klicpera et al., 2013). When parents were surveyed on ways to improve inclusion, three themes emerged: parents encouraged schools to focus on children's strengths, to value family input and expertise, and focus on the best interests of the children (Scorgie, 2015).
Accommodations in School
According to the Individuals with Disabilities Education Act (2019), children with disabilities are legally entitled to a free, appropriate education in the least-restrictive environment, and reasonable accommodations to meet their individual needs. Although children with albinism may require educational accommodations (Jauregui et al., 2018), they may not be receiving necessary supports in school (Corn & Lusk, 2018). When a child with albinism is provided with appropriate accommodations, they report a more positive quality of life, indicating the criticality of accommodations (Jauregui et al., 2018). In their survey of parents of children with albinism, Corn and Lusk (2018) found that parents of children with albinism reported being ill-informed about the services their children were receiving. Parents often find they must take it upon themselves to advocate for accommodations, and “have professional-level knowledge about their child's disability, special education law, and available services” (Sanderson, 2023, p. 351). To ensure students with albinism are receiving the best support services, families should be treated as equal partners with educational institutions (Corn & Lusk, 2018).
Parental Advocacy
In order for children with albinism to have the best possible chance of educational success, educators, school leaders, and professionals should rely on the families of these children to serve as experts and partners in their education (Corn & Lusk, 2018; Sanderson, 2023). One way to begin this partnership is to elicit feedback from parents. Such input could provide educational professionals new knowledge in supporting children with albinism and deepen connections with families (Carter et al., 2016).
Upon surveying parents, Leyser and Heinze (2001) uncovered parental concerns about their visually impaired children. They indicated concerns about their children's future, highlighting uncertainties about future job opportunities, future self-esteem, and financial stress. Corn and Lusk's (2018) survey results of parents of children with albinism indicated that parents were concerned about their children struggling socially and emotionally. Sanderson's (2023) research highlighted that parents of children with disabilities often had negative experiences with professionals as a result of denial of services, generic individualized education programs (IEPs), and failure of schools and educators to implement IEPs.
Advocating for and partnering with parents of children with disabilities is critical in ensuring better educational experiences for children. After the initial stress of diagnosis, the parents of a visually impaired child often experience personal growth and a renewed sense of activism upon acceptance of their child's disability (Leyser & Heinze, 2001). Educational professionals should open a dialogue between families in order to ensure accommodations and children's sense of belonging and inclusion are clear to all adults involved (Corn & Lusk, 2018). Additionally, researchers and policymakers should consider parent-centered policies, supports, and programs in addition to accommodations for students (Resch et al., 2010). Little current research exists on experiences of inclusion and belonging at school for children with albinism, with most studies focusing on needed accommodations. The present study contributes to an understanding of parental perceptions by investigating the construct of inclusion and belonging at school for children with albinism.
Methods
This research on parental perceptions was part of a larger qualitative study on inclusion and belonging for youths with albinism. Qualitative questionnaires provided information from a larger sample of parents, and three interviews provided a deeper narrative of parental perceptions. This exploratory research aimed to answer the question: What do parents perceive about their children's experiences of inclusion and belonging at school? This study was approved by the institutional review board of Rowan University prior to implementation.
Participants and Setting
Data collection occurred at a summer camp for youths with albinism and their families that was in the United States. In order to attend camp, families had to have at least one child with albinism. Out of 30 parents of children with albinism who came to camp, 18 parents with children ranging in age from 6 to 22 years old completed questionnaires. Two of the parents who completed questionnaires had multiple children with albinism. Three parents (two moms and one dad) of children aged 9 to 13 years participated in interviews. Two of the interviewees had also completed questionnaires. In total, 19 participants provided qualitative data for this study. None of the participants had albinism themselves. All parents who participated were familiar with the interviewer due to her other roles at camp.
Instrumentation
Parents responded to anonymously written questionnaires that produced qualitative data. Three parents confidentially participated in semistructured interviews.
Questionnaires
All parents of children with albinism who consented to participate in the research activities were invited to respond to anonymously written questionnaires at a time of their choice throughout the week of camp. Questionnaires are used in qualitative research for “gathering information about people's characteristics, perceptions, attitudes and behaviours [sic]” (McLafferty, 2010, p. 87). Parents completed large-print paper questionnaires, since the program occurred in a location with an absence of technology. The questionnaires included the following open-ended questions related to demographics and inclusion and belonging at school:
How many children with albinism do you have? What are their ages? Do you identify as a person with albinism? What do you think being included looks like for your child? Is being included the same or different than belonging? What kinds of things do you think would make your child with albinism feel more included or like they belong? Can you think of a time at school when you felt your child was included or like they belonged to their school community? Why did you feel that way? What kinds of things do you think would make your child with albinism feel less included or less like they belong? Can you think of a time at school when you felt your child was excluded or like they didn’t belong to their school community? Why did you feel that way?
Questionnaires were not validated, but they were approved by the leadership of an advocacy organization related to albinism prior to use.
Interviews
Three parents were asked to participate in semistructured interviews to give a richer narrative to the questionnaire data. Parents were selected based on their availability to participate in interviews; the researcher approached parents who were in the camp common area during free time. Parents did not have to answer questionnaires to participate in interviews. Interviews were conducted on the past 2 days and just after camp in a private location and recorded for later transcription. Interviews were conducted prior to data analysis of the questionnaires. Interviews began with the same questions as those on the questionnaire, but the one-on-one format allowed the researcher to ask follow-up and clarification questions.
Data Analysis
In order to answer the question of how parents perceive their children's experiences of inclusion and belonging at school, qualitative data from questionnaires and interviews was transcribed and then coded using a general inductive approach (Thomas, 2006) until a point of saturation (Glaser & Strauss, 1967). All themes arose from the data, with no predetermined codes. One researcher performed the initial coding on the data from both sources, while another researcher who was familiar with the data also analyzed the resulting codes. Two members of the reference population who did not participate in data collection critiqued the results and discussion as a means of confirming the credibility of the data.
Results
Defining Inclusion and Belonging
In their questionnaire responses, 15 parents identified that inclusion relates to participating in an activity, but belonging means being wanted. Parents described inclusion with terms like “interacting and engaging,” “given the opportunity,” “being allowed to participate,” and “accommodations provided or easily done.” One parent stated that inclusion was when their child was “provided with the accommodations and supports necessary for her to access/participate in activities/instruction.” Alternately, these parents used phrases like “a sense of being ‘at home,’” “thriving,” “feeling like you are a vital part of the group,” “[being] known/seen/understood,” and “your presence is important” to define belonging. A parent explained that for their daughter, belonging was “feeling as if she is an integral part of it. While it is good to be included, it's better to belong.” Three parents did not make a specific distinction between inclusion and belonging.
Experiences of Inclusion and Belonging at School
The data resulting from questionnaires and interviews revealed issues relating to vision and visual accommodations, sun protection, physical education and sport, being left out of activities, “looking different,” and lack of awareness and representation were related to exclusion and lack of belonging. The theme of vision and visual accommodations had subthemes of accessing print and technology, difficulty obtaining accommodations, and vision in group settings. Increased need for parental and self-advocacy also arose as a theme. Alternately, provision of accommodations, friends, and specific actions of a teacher were associated with inclusion and belonging.
“Nothing Stands Out”
When asked when they felt their child was included or like they belonged to their school communities, four parents indicated there was nothing in particular that inspired such feelings. Parents responded to this question with statements like “nothing stands out”; “at her school, she felt as if she was a bother to them”; and “unfortunately, I don’t think he has.” All four of these parents were able to list specific aspects of school that they perceived made their children feel less included and less like they belonged. Alternately, one parent indicated that their child “is never not included for any reason related to albinism.”
Vision and Visual Accommodations
In the present study, 13 parents discussed aspects of visual impairment and related accommodations as barriers to inclusion and belonging for their children. Seven parents specifically mentioned font size and technology access. One parent wrote that they perceived their child to feel less like they are included and belonged “when the assignments require computer programs that do not work well with the ADA programs [accessibility software] and crashes.” Another parent explained, “She uses a laptop instead of a Chromebook and needs small group testing because of it. She doesn’t need extra time and ends up removed from her friends.” In order to create an environment that supports inclusion and belonging, one parent requested that their child receive “reasonable accommodation for [their] needs to participate to the maximum extent of their personal ability/desires.”
In addition to specific barriers related to accommodations, six parents detailed difficulties in obtaining services and accommodations for their children in schools, which they perceive as affecting their children's experiences of belonging and inclusion. One parent recounted representatives from the school indicating that they would not support her child. The message she got from the school was “we're not going to do this, it doesn't matter what [instructional] hours you need.” Another parent said: Her school made little attempts to make accommodations for her. The administration actually told us that they were “doing all we can.” My response was, “You said can, not will.” To me, that is the same as, “You are doing all that you are ‘willing to do.’”
Assemblies and other group activities may contribute to experiences of belonging and inclusion for children with albinism. Four parents listed that their children experienced increased difficulties with visual tasks in large groups. One parent said that vision affected her child's sense of belonging when she is “at recess, and she has a hard time visually finding her friends.” Another parent explained that getting appropriate accommodations for their child was difficult: “Before she had her monocular, I don’t think she was accessing visual presentations in assemblies.” Parent suggestions for fostering inclusion and belonging for their children included “children introducing themselves when they say ‘hi,’” “ability to choose better seating (not just sit with your class),” and other people “looking for them to bring them into the group.” One parent explained that providing options for all students to move around the classroom specifically supported her daughter's visual needs. In particular, students are “allowed to get up, not just her, so that for me feels like she's included… [I]t's not a difference—she doesn't have to ask to get up to be included in a presentation.” This flexibility in the classroom for all students helped her daughter to self-accommodate.
Sun Protection
Out of the 19 parents who completed questionnaires and interviews, 12 discussed sun protection as a concern with respect to inclusion and belonging at school. Eight parents gave specific examples of times when their child was excluded from participation in school activities or experienced unequal treatment as a result of needing sun protection. One parent wrote, “having to put sunblock on for recess” resulted in their child feeling less like they were included or less like they belonged, while another parent indicated that their child “misses parts of class for SPF [sun protection factor; i.e., sunscreen] application.” Two parents described their children needing to self-advocate in school to explain why they needed to wear sunglasses or hats outdoors. Three parents wrote that they perceived their children would feel more like they were included or belonged if schools were aware of sun protection needs. One parent indicated that “every child should be able to apply sunscreen before outdoor activities,” not just their child.
“Looking Different”
Ten parents indicated that their children experienced barriers to inclusion and belonging due to “looking different.” One parent explained that “constantly having to explain why he wears glasses, hats, looks different, etc.” affected inclusion and belonging at school, while another expressed that their child “doesn’t want to be the kid that always needs help.” In an interview, a parent recounted her constant vigilance to protect her child. She gets a lot of comments in school about her eyes. “Why are her eyes moving?” …[A]nytime we go to a new place and I’m around other kids, I have to be kind of on guard because she's going to get those questions.
Physical Activity and Sport
Physical education, sport, and group games arose as a theme. Ten parents discussed aspects of sport and physical activity as barriers to inclusion and belonging. Two parents indicated that their children were specifically left out of physical education at school: one stated “he just walked around a field” while the rest of the class played team sports; the other parent indicated that their child was a designated scorekeeper. Two parents specifically identified small balls or “getting hit with balls and tripping” as being troublesome for their children during physical activities. Three parents explained that situations in which noneducators were in charge of activities were problematic, such as peer-led programs, after-school sports, and parent-run activities. Parents suggested “pre-teaching 1:1 for physical activities” and larger balls may help their children feel more included in physical activities.
Left Out
Nine parents detailed experiences in which their child was left out or left behind during school. Reasons parents gave for their children being excluded included teachers’ fears that children with low vision will be injured due to their visual impairments; educators not providing children with sufficient amounts of time to put on sunscreen, resulting in students missing activities; and schools not having the resources to support students with disabilities. Two parents described experiences in which school administrators refused to admit their child to a school or verbalized regrets for admitting their child with albinism. One parent summed up their child's experience with an equation: “less included = not included = excluded = not allowed to or able to participate.”
Parental and Self-Advocacy
Five parents discussed an increased need for parental and self-advocacy that affected their perceptions of inclusion and belonging. One parent explained that their child had to constantly self-advocate: “Always having to remind adults of your special needs is exhausting, frustrating and can make a child feel less than their peers.” Another parent wrote, “Self-advocating, while an important skill, is also self-identifying that ‘I’m different.’”
Parents also described their own struggles with advocacy and fights to have their children included in schools. “We fought for years … we ultimately won, but in a very different way than we wanted to,” one parent said. “I feel for parents who don't have the time and resources, you know… it's ridiculous.” Another parent noted attending many meetings to get basic accommodations in place for their child, which was met with resistance: “[The principal] said, ‘Had we known she needed all of these accommodations,’ he stopped and looked at me, and I said, ‘Better finish it. You were going to say, you wouldn't have accepted her as a student?” Parents of children with albinism report that they regularly have to advocate for their children's needs.
Representation and Awareness
Eleven parents discussed the need for better representation of people with albinism and awareness of what albinism means. A parent of a middle school-aged child wrote, “There is very little knowledge about low vision/blindness or albinism. It is frustrating when comments like ‘you can see, so you’re not blind’ are said to her.” One parent reported that their child is always included, but “belonging is hampered by lack of knowledge and understanding of albinism and associated vision issues among teachers, staff and students.” Another parent explained, “If the teachers are uninformed he does not access the curriculum. If he does not access the curriculum he does not learn.”
On the other hand, parents expressed that more awareness could lead to greater acceptance. One parent wrote that they feel their child is included and belonged when friends “… help him because they are aware of his difficulties.” Similarly, another parent explained that, as their child has gotten older, “Her close friends have a better understanding of her unique needs and advocate for her.” Other parents wrote that they wished schools would “create an environment where it is OK to be different” and provide “education [on albinism] for teachers and peers.” Two parents stated they would like to see more representation of people with albinism in their children's daily lives.
Friends
Five parents described the ways in which their children's friends promoted inclusion and belonging at school. One parent wrote, “His friends often help him with activities he finds hard.” Another parent shared, “When she was able to be with her two preferred peers, she seemed to be happy/most comfortable.” A parent also explained that being in clubs and on teams contributed to a sense of belonging: “My kids feel like they belong to the communities created at the school.”
Specific Actions of a Teacher
Five parents identified specific actions teachers took to support their children. One parent reported, “She has a new TVI [teacher of students with visual impairments] this year who I didn't know did way more than I've ever seen anyone for her.” Another parent wrote, “His teacher made subtle accommodations without having to fight for them. [The teacher] also helped to educate the students to understand his limitations so he didn’t have to all the time.” A parent wrote, “During cheer, they positioned her away from [the] sun and towards [the] front without pointing out her needs.” Two parents described how teachers created intentional groupings or partners for group work, which ensured their children did not have to look for partners.
Inclusive Design
Five parents identified the ways in which the principles of inclusive design (Treviranus, 2018) supported belonging and inclusion for their children. Two parents explained that if all technology used in school had accessibility features, their children would not be singled out or left out. Two parents discussed how their children's schools created time for their children to share their experiences related to albinism and vision, which they perceived increased their children's feelings of belonging. One parent explained, “My child did an albinism presentation in elementary school. As part of the presentation, she gave hats and sunglasses to her classmates. They all wore the sunglasses and hats to recess that day and days following.” This opportunity showed the child that the school recognized and respected her differences, rather than creating an environment that ignored them.
Discussion
Vision and Visual Accommodations
People with albinism have visual impairments and may require use of low vision devices and other accommodations in school (Corn & Lusk, 2018). Inaccessible technology and other learning materials contributed to parental perceptions of both exclusion from academic work and from social time at school. Parents reported that their children often had difficulties with technology such as laptops and software for tests, which resulted in missed academic time.
Additionally, parents identified that their children with albinism experienced social difficulties in large group activities due to increased visual demands. Corn and Lusk (2018) report that students with albinism often lack access to orientation and mobility (O&M) services. O&M instruction aims to teach “purposeful and directed movement through and within the surrounding environment” (Wiener et al., 2010, xv). Vision services that include O&M can support more efficient movement through crowded environments for students with albinism.
Sun Protection
Over half of parents surveyed discussed sun protection needs when detailing parts of the school day when their children were excluded. For ocular protection from the sun, students with albinism should also have access to sunglasses and hats (Liu et al., 2021). O&M instructors can conduct sun-lens evaluations to determine an appropriate tint for students’ sunglasses (APH ConnectCenter, n.d.).
When participating in outdoor activities, people with albinism should wear sunscreen with an SPF of 30 or higher that protects against both UVA and UVB radiation (Liu et al., 2021). For students with albinism, access to sunscreen during the school day may be hampered by state laws. Only 23 states allow students to self-carry and self-administer sunscreen, with the remaining 27 states requiring physician or parental permission for administration by a certified medical professional (SUNucate Coalition, 2024; Patterson et al., 2021). For students with albinism living in states that do not allow for ease of access to sunscreen, specifics of how students will access sun protection, requirements for teachers to provide information about outdoor activities in advance, and allowances for extra time to apply sunscreen should be detailed in IEPs and 504 (i.e., Section 504 of the Rehabilitation Act) plans. Allowing access to sunscreen for all students also supports the guidelines of major health organizations with respect to safety during outdoor physical activities (Liu et al., 2021).
Physical Activity and Sport
In physical activity and sport settings, people with albinism may need accommodations due to visual acuity, photophobia, and hypopigmentation (Lepore-Stevens, 2022). Photophobia, extreme sensitivity to and discomfort from light experienced by individuals with albinism, is a concern during outdoor physical activity (Henderer, 2019). Due to hypopigmentation, children with albinism need protection from the sun, breaks in the shade, and regular opportunities to reapply sunscreen during outdoor activities (Lepore-Stevens, 2022). To support the needs of students with visual impairments in physical activity settings, physical educators and coaches should be involved in the IEP or 504 plan team to “provide specific long-term planning for the goals of children with albinism, instead of just trying to fit them in and adapting on the fly” (Lepore & Lepore-Stevens, 2014, p. 240).
Advocacy, Representation, and “Looking Different”
Hypopigmentation is an aspect of albinism that is immediately visible to sighted people. Hairston (2005) found that “the lack of education about albinism led to discrimination and placed [students] into the category of disability based on societal perceptions, myths and stereotypes” (p. 64). The parents involved in the current study identified similar experiences for their own children. The visible nature of albinism means that children with albinism “look different” than their peers, which can increase stigmatization. Fortunately, parents also identified that better awareness of albinism and representation of people with albinism could serve to reduce these stigmas.
Friends and Teachers
Parents identified specific actions of teachers and friends that contributed to inclusion and belonging for their children. Educators have the potential to create spaces of belonging and inclusion for children with albinism through understanding accommodations, participation in IEP meetings, and advocating for students with albinism.
Inclusive Design
Inclusive design is a framework that encompasses the aim to “recognize, respect, and design for human uniqueness and variability” and can be applied to educational settings (Treviranus, 2018, p. 16). Inclusive design differs from universal design for learning slightly, in that “optimal accessibility is relative. We cannot determine whether something is really accessible unless we know the unique needs of the individual, their current goal, and their current context” (Treviranus, 2018, p. 90). In the present study, five parents discussed the ways in which school systems and educators could recognize, respect, and design educational programs for the needs of children with albinism, leading to inclusion and belonging, including providing opportunities to children to discuss albinism and lead awareness activities.
Limitations
There were several limitations of this study with respect to transferability and methodology. This study had a small sample size, which can affect transferability. All parents involved in this study were participants at the same camp for families of youths with albinism. Their participation in such a camp demonstrates that the parent participants were involved in both the lives of their children and in the albinism community, which may not accurately represent the perceptions of all parents or guardians of children with albinism. In part due to the small sample size and homogeneity of the sample, this study does not take into account intersectional identities, such as the needs and concerns of students of color; those who are LGBTQ + (lesbian, gay, bisexual, transgender, queer or questioning, plus others); and those with chronic illnesses like Hermansky-Pudlak syndrome. Future research should explore these intersections.
With respect to methodology, the questionnaire was not validated. However, it was approved by the leadership of an advocacy organization related to albinism prior to the study. At the time of this research, the primary investigator had been a counselor at camp for two summers. Familiarity with the researcher may have made parents more comfortable in answering questions, however, it also could have influenced participation as a result of a desire to support the researcher's work.
Implications for Practice
Educators, administrators, and school systems can implement aspects of inclusive design that not only anticipate the needs of students with albinism, but recognize, respect, and respond to individual needs, goals, and situations. One example of inclusive design is scheduled breaks throughout the day for all students to attend to personal needs, like applying sunscreen. Flexible seating options, with opportunities to move in the environment, can provide students with better visibility of the lesson without interrupting or singling out a student with a visual impairment. Those responsible for choosing technologies for student use should thoroughly vet software, devices, and online learning platforms to ensure they have built-in accessibility features. Schools should ensure that technology solutions are fully accessible to students with visual impairments.
With respect to physical and other outdoor activities, students with albinism may need accommodations for both vision and hypopigmentation. In bright lighting or when transitioning between lighting conditions, educators should ensure students have access to hats and sunglasses, allow students extra time to transition, and offer human guide or encourage cane use (Lepore-Stevens, 2022). Other supports students with low visual acuity may need include preferential seating to view demonstrations; high color contrast targets, balls, and other equipment; boundaries marked with cones; and larger or auditory targets, balls, and other equipment (Lepore-Stevens, 2022). Additionally, as one parent identified in the present study, preteaching skills can support learning in physical education for students with visual impairments (Perkins et al., 2013).
Conclusion
In this study, several parents identified the importance of a broader awareness of albinism. Educators, administrators, and school systems can increase community understanding of albinism by including discussions of albinism in health classes, highlighting accomplishments of people with albinism, and utilizing examples and images of people with albinism throughout the educational environment. Some children with albinism may want to include their peers in activities that specifically promote awareness of albinism. One element of an inclusively designed educational setting is respecting individual differences. Parents in the current study identified perceiving a greater sense of belonging for their children when schools allowed students with albinism to lead awareness activities and introduce other students to their needs. These activities may, in turn, lead to children with albinism finding friends and peers who will advocate for them as well. Through greater awareness and representation of people with albinism, educators, administrators, and school systems can contribute to the belonging and inclusion of their students with albinism.
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) received no financial support for the research, authorship, and/or publication of this article.
