Body Image, Identity Development, and Social Media Use Among Youth With Visual Impairment: A Single Case Intervention Study

2\. Background and Rationale VI is a term used to describe a partial or complete loss of vision that cannot be corrected with glasses or contact lenses. It can range from mild visual difficulty to complete blindness. It can be caused by either congenital or acquired eye maldevelopments (PVI: peripheral VI) or disruptions in central visual pathways (CVI: cerebral VI). A recent meta-analysis highlights a striking global prevalence of VI in those under 20. Most PVIs stem from genetic issues, like hereditary retinal dystrophies. In contrast, CVI involves damage to post-geniculate visual pathways due to factors like birth hypoxic-ischemic damage, and, as such, is very frequent in children with cerebral palsy. Up to 70% of individuals with genetic syndromes (such as Down Syndrome and other neurodevelopmental disorders) have VI. For this study in particular, children and adolescents with a moderate CVI and children and adolescents with a moderate visual impairment according to the definitions of the World Health Organizations Report on Vision, who have functional impairments that require adjustments, tools and/or support at school will be included. Children and adolescents whose vision can be corrected with glasses and/or contact lenses do not fit the requirement of this study. VI significantly impacts psychological, educational, and social performance, adding mental burden and affecting individuals' quality of life (QoL). In this regard, children with VI experience worse QoL than population-based samples, body image development and mental and social well-being.

Regarding body image development, children and adolescents with VI face unique challenges in developing their body image compared to their unaffected peers. Body image development is a crucial developmental task during childhood, marked by significant biological (e.g., development of secondary sex characteristics), cognitive (e.g., increased self-reflection skills), and psychosocial changes (e.g., heightened importance of peer relationships), directing children's focus toward their evolving physical bodies. Children and adolescents with VI are at a heightened risk of developing negative body image, influenced by various challenges across different contexts (i.e., personal, interpersonal including peer and parental relationships, and societal including media portrayal of appearance), contributing to feelings of differentiation from their unaffected peers. Scholars have advocated to more systematically explore and identify experiences of youth with VI that can nourish and/or harm their healthy body image development. Building on the identification of these experiences, amongst others, the VIPPSTAR project aims to offer the first holistic framework for a life-long enhancement of health, well-being, and autonomy of children and adolescents with VI of different degrees of severity. The VIPPSTAR project will do this through building an online platform, which will contain an avatar that will assist adolescents with VI in several elements of their life; nutrition, physical activity and body image. The current study will solely use the body image module of the platform.

While different factors contribute to body image development, one potentially profound socialization factor is social media. Social media play a dominant role in the lives of children and adolescents, especially visual platforms like Instagram, TikTok, Snapchat and YouTube. For people of all ages and with different types of VI, social media are known to play a big role in their lives. However, since the visual nature of these platforms, users are encouraged to present themselves in a physically attractive way. The idealized appearance images on these platforms typically reflect narrow beauty standards. Exposure to such idealized bodies on social media can lead to internalization of these ideals and adopting them as personal beliefs.

As adolescence marks period with a high risk for the development body image concerns, scholars have noted this developmental period as a key time for intervention. Furthermore, digital and/or mobile interventions have high potential for success for adolescents. Previous research additionally showed that having social media literacy can be a protective factor for body image. Consequently, the present intervention study will examine the effectiveness of doing weekly exercises on body image states in VI children and adolescents. This study specifically focuses on children and adolescents (10-18 years old old) since they are avid social media users. Furthermore, the development of body-related beliefs and behaviors are especially salient during this developmental stage. Additionally, interventions targeting body image and social media literacy have previously been shown to have a small effect in adolescents without a visual impairment. The primary study objective is therefore to explore if doing exercises about body image and social media literacy related to body image can improve the body image of children and adolescents with VI. Conducting this intervention study might lead to a more comprehensive approach of the development of these children and adolescents.

3\. Study Design and Objective 3.1 Study objective

* Primary objective: to test the effectiveness of a digital intervention on body image and (social) media literacy of children and adolescents with VI

3.2 Primary Endpoints This is a prospective, monocentric, academic single case experimental design (SCED) intervention study including children and adolescents with VI (aged 10-18), followed up at the Ophthalmology department and the Cerebral Palsy Reference Center of UZ Leuven, (specialized) schools and other expertise centres (see recruitment strategy and procedure below under '3.4 Recruitment'). The endpoints to evaluate our study objective are quantitative surveys in a single case experimental design (SCED), which are detailed and explained under '3.3 Study design'. All surveys will be self-reported by the youth with VI themselves. Before the start of the study, parents giving informed parental consent will be asked impairment-specific questions as they are expected to hold more accurate information about, for instance, the severity of visual impairment of their children. This procedure will be detailed further under '3.4 Recruitment and informed consent'.

3.3 Study design This study will implement a single case experimental design (SCED). In this design, repeated measures are taken from a small number of participants. This method is fitting for novel topics and hard to reach populations. Furthermore, this method can provide rich, high quality data that can reveal change processes within individuals that might otherwise be masked in larger randomized control trials. Instead of finding statistical power by studying a large sample, statistical power is found in measuring the same variables in the same select group of participants repeatedly. Since the goal of this intervention is to study changes in body image and social media literacy in children and adolescents with VI, the SCED is an apt method for this intervention study. In our study, we aim to initially recruit 15 participants. In this way, if some participants stop participating during the study, there are still enough participants included for a SCED. In published psychology papers implementing SCED, it is common to have five to ten participants, evidence in SCED should generally have at least three demonstrations of an effect at different points in the duration of the study or across different participants. However in the current study, we would like to include more participants than three due to the high heterogeneity of the target population.

In SCED, a study is divided into different phases. Each phase needs at least 5 measuring moments to be able to conduct statistical analysis and compare phases within each individual participant. This intervention study will be divided into the pre-intervention phase (phase A) and the intervention phase (phase B). Phase A will start two weeks before the start of the intervention. Participants will be asked to fill in the pre-intervention survey 5 times during this phase, forming the baseline measure. Phase B will start from the first Monday of the first week of the intervention. During Phase B, participants will be asked to fill in same survey twice a week, after the completion of each body image exercise (2 per week). Hence, after the three weeks of the intervention, all the variables in the survey will be measured 6 times during the Phase B. Lastly, in two and a half weeks post-intervention, participants will be asked to fill in the survey 5 more times, making 10 measurements in Phase B in total.

In this study, repeated measurements will be taken of body image and social media literacy state variables (State self-esteem, state body satisfaction, state body surveillance, state functionality appreciation, state social media physical appearance comparisons, state cognitive social media literacy and state affective social media literacy). These variables will be measured 16 times during the study (5 times during phase A, 6 times during phase B and 5 times during phase C). As a pre-measure, the concepts of illness identity and perceived physical health are additionally measured to assess the child's/adolescent's feelings about their visual impairment and health. Measuring these concepts will provide some important contextual information about the participant, however they are less fitting to be adjusted to daily measures. Furthermore, the intervention does not focus on improving these variables. Hence, they are only measured as a pre-measure the first time participants complete the survey.

The intervention exercises are aimed at improving body image and social media literacy related aspects. The exercises do this by not only making the participant learn about what body image is and how social media can impact body image, but also by letting the participant actively think and write about their body image and strategies they can imply to combat negative feelings they might experience because of social media. Actively thinking about these matters has been proven effective for body image components in other intervention studies. The survey will assess daily state measures for self-esteem and several body image and social media literacy variables (State self-esteem, state body satisfaction, state body surveillance, state functionality appreciation, state social media physical appearance comparisons, state cognitive social media literacy and state affective social media literacy). These variables will be measured daily since we expect the interventions to significantly improve the average of these variables in the different phases of this SCED study. A detailed description of the survey and intervention exercises is given under '3.8 Surveys and intervention material'.

3.4 Recruitment

The selection criteria for participation in our research project are: (1) participants must be between the ages of 10 and 18, (2) participants must have a VI, (3) must be proficient in the Dutch language, and (4) must be active on digital (social) media platforms such as Instagram, Facebook, TikTok and YouTube and/or online social gaming platforms such as Roblox and Minecraft. Expressing interest in our study does not entail any obligation to participate. This will also be clearly communicated in the information letters distributed to interested participants/parents of participants during the recruitment. Furthermore, participants can decide to withdraw from the study at any time. Below, we will detail the specific procedure. We will search for interested adolescents with VI through the following methods:

* Contacting schools across Flanders; * Collaborate with the Child Ophthalmology Department and the CP Reference Centre UZ Leuven; * Contacting other existing organizations in Flanders that suppor