The impact of cerebral visual impairment (CVI) on mental well-being and physical health in adults: An exploratory study

Abstract

This exploratory study examines the impact of cerebral visual impairment (CVI) on mental well-being and physical health in adults. Using an online survey, data was gathered from 27 participants across seven countries. The study reveals high prevalence rates of anxiety (83.3%), emotional regulation difficulties (66.7%), and unique CVI meltdowns (72.7%), significantly impacting daily life. Physical health issues, including fatigue (95%) and headaches (76%), are exacerbated by complex environments. Participants also reported a higher incidence of additional conditions like autoimmune disorders. Descriptive statistics, chi-square goodness-of-fit tests, and binomial tests were used to analyse the data, identifying significant patterns in the distribution of environmental triggers and their relationships with reported mental well-being and physical health issues. The findings underscore the necessity of holistic support frameworks that address visual, mental well-being, and physical health, emphasising the integration of lived experiences in their development. This research fills a critical gap in understanding CVI’s broader effects, calling for further studies and targeted interventions.

Introduction

Cerebral visual impairment (CVI) is a term used to describe a wide range of visual issues due to damage or injury to the visual areas of the brain (Lueck & Dutton, 2015), and is widely recognised as the leading cause of visual impairment affecting children in the economically developed world (Sakki et al., 2018; Williams, Pease, Warnes, et al., 2021). While it is recognised that CVI could also be a leading cause of vision impairment in adults, there is currently limited data on the prevalence of this condition in this population. In addition to the main early causes of CVI (premature birth, lack of oxygen or low blood sugars at birth) (Jacobson et al., 2006; Macintyre-Beon et al., 2013), CVI can be acquired at any age throughout childhood and into adulthood. Common causes of acquired impairments of visual function and functional vision consistent with CVI include closed head injury, damage to specific brain locations, epilepsy, metabolic disorders, infections of the central nervous system, degenerative brain disorders, strokes and inflammation of the brain due to infection or conditions such as multiple scleroses (Berthold-Lindstedt et al., 2017; Macintyre-Beon et al., 2013; Rowe et al., 2022). The common visual issues experienced by individuals with CVI include reduced central vision and/or clarity of vision, peripheral visual field loss, problems with eye movement control, and visual perceptual difficulties (Rowe et al., 2022; Williams, Pease, Warnes, et al., 2021). Visual perceptual difficulties can include visual inattention/neglect, simultanagnosia, optic ataxia, impaired recognition of objects, faces and colour, impaired depth and impaired motion or spatial detection (Goodale, 2013; Goodale & Milner, 2013; Rowe et al., 2022).

Whether congenital or acquired, CVI can impact greatly on the affected individual in all aspects of their lives. In addition to the wide array of visual issues, adults with lived experience have also reported both mental well-being and physical health issues that they believe are connected or caused by their CVI. Self-reported mental well-being issues have included emotional regulation difficulties, anxiety, and depression (Andrésdóttir et al., 2024; CVI Scotland, 2024; McDowell, 2019, 2024a). These mental well-being issues may stem from multiple factors, including the increased cognitive load associated with processing and understanding confusing and unreliable visual information, the impact this has on daily tasks and activities and social interactions. In addition, the invisible nature of CVI – where individuals may appear to have typical visual acuity but experience significant visual perceptual difficulties – can lead to misunderstandings and a lack of appropriate support, potentially further impacting on mental well-being (Andrésdóttir et al., 2024; McDowell, 2019, 2024a; McDowell & Dutton, 2019).

Similar mental well-being issues have been reported in children with CVI, including difficulties with developing and maintaining friendships (McDowell, 2023), lower quality of life scores (Bauer et al., 2023; Collart et al., 2024), difficulties with emotional regulation and high levels of anxiety (McDowell, 2023; Williams, Pease, Goodenough, et al., 2021). Research on adults who are blind or have low vision (BLV) has also shown a similar trend, with one study finding 81.7% of low-vision adults experience anxiety and 85% experience depression (Khurana et al., 2024). This is compared with a prevalence rate of between 10% and 15% of both anxiety and depression in a general adult population (rates vary across different regions) (Dobson et al., 2020; Hajek & König, 2020; Sinha et al., 2021). Additionally, a systematic review by Hepworth and Rowe (2016) highlighted a reduction in quality of life for stroke survivors experiencing visual difficulties. However, to date, there has been no research specifically focused on mental well-being issues experienced by adults with CVI.

In addition to the mental well-being issues experienced by many in society (i.e., anxiety and depression), many individuals with CVI have highlighted a mental well-being issue that is unique to this population: CVI meltdowns. CVI meltdowns are described as an incapacitating behavioural reaction that occurs in overwhelming situations and environments, where there are too many sights and sounds (CVI Scotland, 2025). CVI meltdowns can greatly impact on how individuals with CVI interact and engage with the world around them and can further reduce mental well-being when experienced often (McDowell, 2019; McDowell & Dutton, 2019). However, to date, there has been no research exploring how many adults with CVI experience CVI meltdowns, the impact they have on day-to-day life, or the types of environments that can trigger them.

In relation to physical health issues, adults with CVI have reported that they experience headaches, nausea, fatigue and physical injuries (Andrésdóttir et al., 2024; CVI Scotland, 2024; McDowell, 2019, 2024a). While it is not uncommon for adults who are BLV to experience a range of physical health issues, it is generally thought to relate to a sedentary lifestyle and reduced physical activity and not necessarily directly caused by their visual issues as such (Barbosa Porcellis da Silva et al., 2018; Marmeleira et al., 2014). However, in the case of CVI, due to the neurological basis of the visual issues, they can create a unique physiological impact or burden not typically seen in individuals with ocular visual impairments (OVI) (Martin et al., 2016). The constant cognitive effort required to process and interpret visual information with damaged or inefficient visual pathways may trigger a cascade of neurological responses, including increased cortical activation and compensatory mechanisms that can manifest as physical symptoms (Zihl & Dutton, 2015). For instance, adults with CVI have reported a flu like response (high levels of fatigue, body aches, nausea), leading to an extreme exhaustion following visually demanding tasks or environments (Andrésdóttir et al., 2024). This description appears distinct from reports of visual and/or general fatigue experienced by adults with OVI.

Additionally, the physical symptoms reported by adults with CVI often relate to specific environments. For example, many report their symptoms intensify in environments that are visually complex, cluttered, crowded and/or busy, as well as noisy and unknown environments, and changes in routine. This suggests a direct relationship between visual processing demands and physical well-being (Andrésdóttir et al., 2024; Zihl & Dutton, 2015). This environmental and context correlations further support the idea that these physical health issues stem directly from the additional cognitive load of processing unreliable and inefficient visual information, rather than from secondary factors, such as reduced physical activity. Furthermore, adults with CVI may have an increased risk of sustaining physical injuries due to their visual issues (Patino et al., 2010), specifically challenges with visual fields, depth perception, spatial awareness, and visual guidance of movement (Goodale, 2013; Rowe et al., 2022), creating additional physical health concerns. Compounding both the mental well-being and physical health issues is the bidirectional nature of CVI and the issues experienced. For example, the visual issues themselves may trigger an emotional response, such as anxiety in a cluttered environment, or in extreme cases, a CVI meltdown, which in turn further reduces visual function in general. This relationship has again been described by those with lived experience of CVI (Andrésdóttir et al., 2024; CVI Scotland, 2024; McDowell, 2019, 2024a), but is currently not highlighted in detail in CVI research and literature.

In addition to the mental well-being and physical health issues experienced by adults with CVI, many also experience additional or associated conditions. Common additional conditions in children with CVI include OVI, oculomotor disorders, neurodevelopmental disorders (autism, attention-deficit/hyperactivity disorder [ADHD], intellectual disability, dyslexia, auditory processing disorder) and cerebral palsy (Chokron et al., 2020; Fazzi et al., 2007; Sant et al., 2023). While it can be surmised that adults with CVI since birth also experience similar additional conditions, to date, there has been no research focused on this specifically, or even the prevalence of additional conditions in this population (including those with acquired CVI). Moreover, given the ongoing strain and impact on the body of both the mental well-being and physical health issues reported by adults with CVI (Andrésdóttir et al., 2024; CVI Scotland, 2024; McDowell, 2019, 2024a), the potential for chronic illnesses, such as autoimmune conditions, may be increased. Again, to date, there has been no research exploring the long-term impact on health of mental well-being and physical health issues in adults with CVI.

When combined, the visual, mental well-being and physical health issues experienced by adults with CVI have the potential to greatly impact on both day-to-day functioning, as well as overall quality of life. By better understanding this complex interplay, a more holistic approach to supporting adults with CVI can be developed, which would hopefully reduce the daily impact of living with this condition. The purpose of this research, therefore, was to gather initial data on the types of mental well-being and physical health issues experienced by adults with CVI, the overall impact their issues had on day-to-day life, and whether specific environments or contexts exacerbated these issues. In addition, the research aimed to gather data on the prevalence and types of additional conditions adults with CVI commonly experienced.

Research process

A quantitative research design was used in this exploratory study looking at the mental well-being and physical health issues experienced by individuals with CVI. In addition to better understanding the mental well-being and physical health issues adults with CVI experienced, the study also aimed to help determine what further research is needed in this area.

Procedure

In order to reach as many adults with CVI as possible from around the world, an online survey was deemed the most appropriate research method. To ensure the questions asked in the survey were relevant to the community being investigated, the first draft was shared with a pilot group of four people. This group included BLV adults (including those with CVI), parents of children who have CVI and academics working in the field of supporting people who are BLV and were recruited through the authors CVI networks. Suggestions from this pilot group were then incorporated into the survey prior to the research being advertised. Once the final version of the survey was agreed on by the two authors, the research was advertised via social media, CVI websites, through BLV agencies and the authors own CVI networks. Potential participants were provided with information on the first page of the survey to allow them to make an informed decision on whether they would like to participate in the research. Completion of the survey implied consent. The authors email addresses were provided, and participants were encouraged to make contact if they wanted to discuss the research further. Links to BLV and CVI support services were also provided in case any of the questions in the survey caused any distress to the participants. The research was approved by the Massey University Human Ethics Committee (approval number OM1 24/41).

Participants

Following a data cleaning process that removed six survey responses that contained incomplete or missing data, a total of 27 responses were recorded from adults who had CVI. These responses were from a total of seven different countries around the world, including the United Kingdom of Great Britain and Northern Island (39%), the United States (31%), Australia (8%), Iceland (8%), the Netherlands (8%), Germany (4%), and New Zealand (4%). Participants were not asked to indicate if responses were completed by a proxy; however, participants were asked to discuss responses with the individual with CVI if they were responding on behalf of them.

Data gathering

The research was based on a multi-sectioned, online survey for both adults with CVI and parents and caregivers of children (of any age) with CVI (the results of the child data are reported in a separate article). Participants could choose not to answer any question or respond with prefer not to say if an answer was required for the skip logic in the survey to work effectively. The survey was written in English and consisted of the following sections:

1. Demographics. Questions pertaining to the adult’s gender, age, and country of origin. Also, at what age they acquired CVI, whether or not their CVI has been diagnosed by a medical professional, how long it took for them to be identified as having CVI and whether they had additional conditions.

2. Mental well-being. Questions pertaining to the adult’s mental well-being and whether they experienced specific mental health issues. In relation to each mental health issue, adults were asked how much the issue impacted on day-to-day life, what environments and contexts exacerbated the issues and what strategies were used to reduce the impact of the issue.

3. Physical health. Questions pertaining to the adult’s physical health and whether they experienced specific physical health issues. In relation to each physical health issue, adults were asked how much the issue impacted on day-to-day life, what environments and contexts exacerbated the issues and what strategies were used to reduce the impact of the issue.

Data analysis

The data from the survey were analysed quantitatively. Descriptive statistics were used to summarise participants’ demographic information and prevalence rates of reported mental well-being and physical health issues. Chi-square goodness-of-fit tests were utilised to determine the significance of differences in reported experiences compared to what would be expected by chance. In addition, binomial tests were conducted to compare proportions and assess the impact of various issues on daily life. The distribution of environmental triggers was also analysed to identify significant patterns and correlations with the reported mental well-being and physical health issues.

Results

Demographics

The age of the adults ranged from 18–25 to 66–75. The numbers in each age bracket were as follows: 18–24 n = 7, 26–35 n = 8, 36–45 n = 3, 46–55 n = 4, 56–65 n = 4, and 66–74 n = 1. The median age bracket was 26–35 years, which was also the modal age bracket (n = 8, 29.63%). Seventy-seven per cent of the adults were female, 16% were male, 4% were nonbinary and 4% preferred not to say. Seventy-four per cent of the adults had had CVI since birth, 8% had acquired CVI and 20% were not sure when they developed CVI. Eighty-five per cent reported that their CVI had been diagnosed by a medical practitioner, 12% had not been diagnosed and 4% had not yet been diagnosed. Seventy-seven per cent reported they had additional conditions, some of which included neurodevelopmental conditions (41%), autoimmune conditions (26%), cerebral palsy (11%), and ocular visual issues (11%). A chi-square goodness-of-fit test revealed a significant difference in the expected distribution of responses, x²(2) = 23.17, p < .001, indicating a higher than what would be expected by chance prevalence of participants experiencing additional conditions.

Mental well-being

Emotional regulation

A chi-square goodness-of-fit test was conducted to examine participants’ self-reported difficulties with emotional regulation. Of the 27 responses, 18 (66.7%) reported that they often had difficulties with regulating their emotions, while 6 (22.3%) did not report such difficulties. Two (7.4%) were unsure and 1 (3.7%) preferred not to say. The chi-square analysis revealed that the distribution differed significantly from what would be expected by chance, x²(3) = 27.07, p < .001, indicating a strong tendency among participants to report challenges with emotional regulation.

From the 18 who reported difficulties with emotional regulation, the impact on daily life was most commonly rated as ‘A lot’ (38.9%) or ‘A moderate amount’ (27.8%), with a mean rating of 3.39 (SD = 0.95) on a scale from 1 to 5. Statistical analysis revealed that this distribution of ratings across categories, x²(4) = 8.11, p > .05, and the proportion of high impact ratings (50%, p = 1.00) did not differ significantly from chance expectations, possibly due to the small sample size.

Analysis of environmental triggers for emotional regulation difficulties (participants could select multiple triggers from a predetermined list) revealed that participants (n = 18) identified multiple factors per person (M = 5.56). The most commonly reported triggers were unknown environments and extreme temperatures (83.33% each), closely followed by cluttered environments, noisy environments, busy environments, and environments with many people (77.78% each). Physical environmental factors collectively represented 57% of all selections, while social and predictability factors comprised 40%.

Anxiety

Participants were asked if they regularly experienced anxiety. A chi-square goodness-of-fit test was conducted to determine whether the frequencies of participants reporting regular anxiety experiences differ significantly from chance. Of the 24 participants, 20 (83.3%) reported experiencing anxiety regularly, while 4 (16.7%) did not. The analysis revealed that this distribution differed significantly from the expected equal distribution, x²(1, N = 24) = 10.67, p = .001, Crammer’s V = 0.67. This indicates a strong and statistically significant tendency for participants to experience regular anxiety.

Participants were then asked how much the anxiety impacted on their day-to-day lives. A binomial test was conducted to evaluate whether the distribution of anxiety impact scores significantly differed from what would be expected by chance alone. Participants responses to the 5-point Likert-type scale measuring anxiety impacts were categorised as ‘low impact’ (scores 1–2), or ‘moderate to high impact’ (scores 3–5). Of the 18 participants reporting anxiety, 72.2% (n = 13) indicated that anxiety had a moderate to high impact on their daily functioning, while 27.8% (n = 5) reported low impact. The binomial test revealed that this distribution differed significantly from the hypothesised proportion of 50% (p = .048, two-tailed), suggesting that anxiety has a meaningful impact on daily functioning for most participants experiencing it.

Participants were then asked if there were any environments or contexts that made their anxiety worse. Unknown environments were most frequently reported (17%), followed by busy environments with lots of movement (16%), cluttered environments (15%) and the presence of many people (15%). Notably, no participants indicated an absence of environment or context triggers, suggesting ubiquitous environmental sensitivity among those who experienced anxiety. A chi-square goodness-of-fit test was performed, and the analysis yielded a significant result, x²(8) = 29.56, p = .002, indicating that certain environmental factors consistently trigger anxiety more than others. The category ‘none’ (0%) and ‘other’ (1%) showed the greatest deviation from expected frequencies, further supporting the findings that participants identify specific environmental factors rather than reporting no environmental sensitivity.

CVI meltdowns

Of the participants (22) who responded to the question on whether they experience CVI meltdowns (described as an incapacitating behavioural reaction to too many sights and sounds), 16 (72.7%) responded with yes, 5 (22.7%) did not experience them, and 1 (4.5%) was unsure. A chi-square goodness-of-fit revealed that this distribution differed significantly from the expected equal distribution, x²(2, N = 22) = 16.45, p < .01. This indicates that the prevalence of CVI meltdowns in this sample was substantially higher than would be expected by chance.

Among the 16 participants who reported experiencing CVI meltdowns, none reported ‘no impact at all’, while 3 (18.75%) reported ‘a little impact’, 6 (37.5%) reported ‘a moderate amount’, 6 (37.5%) reported ‘a lot’, and 1 (6.25%) reported ‘a great deal of impact’. A chi-square goodness-of-fit test did not reveal a significant difference in the distribution of impact ratings, x²(3, N = 16) = 4.5, p > .05, indicating the participants’ responses did not differ significantly from what would be expected by chance across the observed impact categories. When comparing participants reporting moderate to high impact (Levels 3–5) versus low impact (Levels 1–2), a binomial test showed that significantly more participants reported moderate to high impact (81.25% vs. 18.75%, p = .021). However, when comparing only high impact (Levels 4–5) versus low to moderate impact (Levels 1–3), the difference was not statistically significant.

Participants identified multiple environmental contexts that worsen CVI meltdowns, with an average of 5.3 triggers selected per respondent. The most frequently reported triggers were busy environments with lots of movement (16%), followed by noisy environments (15%), unknown environments (15%), and environments with many people (15%). Cluttered environments were also commonly reported (14%). Changes to routines and extreme temperatures were each selected by 11% of respondents. Notably, no participants selected ‘None’, indicating that all respondents identified at least one environmental trigger. A chi-square goodness-of-fit test revealed a significant difference in the distribution of environmental triggers, x²(8, N = 85) = 22.26, p < .01, indicating that certain environmental factors were consistently reported as more problematic than others. When grouping the categories into broader categories (sensory environments, social/cognitive environments, and none/other), sensory environments (56.47% of respondents) and social/cognitive environments (41.18% of respondents) were significantly more frequently reported than the none/other category (2.35%), x²(2, N + 850 = 39.69, p < .01.

Physical health

Headaches

A chi-square goodness-of-fit test was conducted to examine whether participants were equally likely to experience regular headaches. The results revealed that a significantly high proportion of participants reported experiencing regular headaches (76%, n = 16) compared to those who did not (24%, n = 5), x²(1, N = 21) = 5.76, p < .05.

A chi-square analysis revealed the impact of headaches on participants’ daily lives was not equally distributed across response categories, x²(4, N = 16) = 13.38, p < .05. Half of the participants (50%) reported that headaches impacted their daily lives ‘A lot’, while 31.25% reported ‘A little’ impact. Binomial tests examining the proportion of participants reporting high impact versus lower impact were not statistically significant, suggesting that while the distribution across specific categories was uneven, the proportion of participants experiencing substantial disruption to daily life did not significantly exceed what might be expected by chance.

A chi-square analysis was conducted to examine whether certain environments or contexts were more frequently reported as exacerbating headaches. The results indicated no statistically significant differences in distribution of environmental triggers, x²(8, N = 69) = 7.83, p > .05. However, descriptively, extreme temperatures (16%) and environments with many people (14%) were the most commonly reported triggers, while very few participants (3%) reported that no particular environment worsened their headaches. This suggests that while triggers varied among individuals, most participants could identify specific environmental factors that exacerbated their headache symptoms.

Nausea

Participants were asked if they regularly experienced nausea. Of the 20 responses, 12 (60%) reported they did, 7 (35%) reported they did not, and 1 (5%) was unsure. A chi-square goodness-of-fit test revealed that this distribution of responses differed significantly from the expected equal distribution, x²(2) = 9.10, p < .05. This indicates that the pattern of responses, with a majority reporting regular nausea symptoms, is statistically significant and unlikely to have occurred by chance.

Participants who responded that they did experience nausea were then asked how much this impacted on their day-to-day life. In total, 38.46% (n = 5) have ‘A little’ impact, while 23.08% (n = 3) reported ‘A great deal’ of impact. Equal proportions (15.38% (n = 2)) reported ‘A moderate amount’ and ‘A lot’. Only 7.67% (n = 1) reported no impact at all. The chi-square test indicated that this distribution did not differ significantly from what would be expected by chance, x²(4) = 3.54, p > .05. When responses were dichotomised into low impact (ratings 1–2; 46.15%) and high impact (ratings 3–5; 53.84%) categories, a binomial test revealed no significant difference from an equal 50/50 spilt (p = 1.0). The mean impact rating was 3.08 (SD = [including standard deviation]), suggesting that participants typically experienced a moderate level of disruption to daily activities due to nausea symptoms.

Participants identified multiple environmental factors that exacerbated their nausea symptoms. Busy environments with lots of movement and extreme temperatures were each reported by 15.91% of respondents (n = 7 for each), making them the most frequently identified triggers. Unknown environments were reported by 13.64% of respondents (n = 6). Four categories – cluttered environments, noisy environments, presence of many people, and other (i.e., strong fragrances, and bright lights) – were each reported by 11.36% of respondents (n = 5 for each). Change in routine was reported by 6.82% (n = 3), while only 27.27% (n = 1) experienced no triggers. A chi-square test revealed that this distribution of responses across different environmental triggers and contexts did not differ significantly from an equal distribution, x²(8) = 5.91, p > .05. On average, participants identified 3.88 different environmental triggers, suggesting that nausea symptoms are typically exacerbated by multiple environmental factors rather than a single dominant trigger.

Tired

When asked if they are often very tired, the vast majority of participants (95%, n = 19) responded affirmatively, with only one participant (5%) responding negatively. This overwhelming pattern was, unsurprisingly, statistically significant when compared to an equal distribution, x²(1, N = 20) = 16.2, p < .001.

Participants were also asked to rate how much their tiredness impacts on their day-to-day life. All participants reported at least a moderate impact, with the majority indicating substantial effects (73.7% reporting ‘A lot’ or ‘A great deal). A chi-square test confirmed that this distribution differed significantly from an equal distribution across response categories, x²(4, N = 19) = 13.89, p < .01. Binomial tests further revealed that the proportion of participants reporting high impact (categories 4–5) was significantly greater than would be expected by chance (p = .003), as well as the proportion reporting at least a moderate impact (p < .001).

Participants identified multiple environmental contexts that exacerbated their tiredness. Chi-square analysis revealed a significant difference in the distribution of responses across all categories, x²(8, N = 109) = 20.88, p < .01. Nearly all participants (95.4%) identified at least one specific environmental trigger, with very few reporting no triggers or unspecified ‘other’ triggers, x²(1, N = 109) = 19.61, p < .001. Among the seven specified environmental factors, there was no statistically significant preference, x²(6, N = 104) = 1.00, p > .05, suggesting that cluttered environments (15.6%), busy environments (14.7%), noisy environments (13.8%), unknown environments (13.8%), and environments with lots of people (13.8%) all contributed similarly to increased tiredness. This pattern indicates that multiple types of sensory and social environments can trigger or worsen fatigue among participants.

Physical injuries

Participants were asked if they often acquired physical injuries from falls, trips or walking into objects. From the 20 responses, 65% (n = 13) responded ‘Yes’, while 25% responded ‘No’, and the remaining participants selected ‘Not sure’ (5%, n = 1) or ‘Prefer not to say’ (5%, n = 1). A chi-square goodness-of-fit test indicated that this response distribution differed significantly from the expected equal distribution, x²(3) = 19.2, p < .001. This suggests that participants’ responses were not randomly distributed across the available options but showed a clear pattern favouring affirmative responses to experiencing physical injuries.

When asked about the impact of physical injuries on their day-to-day lives, participants reported varying levels of impact: ‘None at all’ (7.1%, n = 1), ‘A little’ (35.7%, n = 5), ‘A moderate amount’ (28.6%, n = 4), ‘A lot’ (0.00%, n = 0), and ‘A great deal’ (28.6%, n = 4). A chi-square goodness-of-fit test indicated that their response distribution did not differ significantly from an equal distribution, x²(4) = 6.71, p = .15. Further analysis using binomial tests revealed that the proportion of participants reporting moderate or greater impact (57.1%) versus those reporting less than moderate impact (42.9%) was not significantly different from an expected equal distribution (p = .79). The mean impact rating was 3.07 (SD = 1.33) on a 5-point scale, with ‘A little’ being the most frequently selected response.

Participants identified several key environmental factors that worsen their experience of physical falls. Unknown environments (18.5%) and busy environments with lots of movement (18.5%) were most frequently reported, followed by environments with many people (16.9%) and cluttered spaces (15.4%). A chi-square analysis indicated a significant non-random distribution of responses across the nine categories, x²(8) = 20.15, p < .01, indicating clean environments that increase fall risk.

Autoimmune conditions

Twenty-six percent of respondents reported that they had also been diagnosed with an autoimmune condition in addition to their CVI. Comments from participants also suggested that they believed their CVI had directly contributed to their developing autoimmune conditions. For instance, one participant noted ‘I believe living in the constant cortisol/adrenaline rush has really worn down my endocrine system, which is in turn affecting my hormones’.

Discussion

CVI has historically been viewed solely as a visual impairment, with limited research exploring the impact the visual issues can have on both the mental well-being and physical health of affected adults. While more and more adults with lived experience have been sharing how CVI can impact all aspects of their lives (Andrésdóttir et al., 2024; CVI Scotland 2024; McDowell, 2019, 2024b), the literature supporting these accounts remains limited. To improve quality of life for affected adults through more targeted supports (for visual, mental well-being and physical health issues), it therefore seems imperative that this disconnect between the lived experience and the literature is explored in depth, to bridge this gap and develop a more holistic framework/approach for supporting adults with CVI.

Given that a statistically significant number of adults with CVI in this research also had additional conditions (77%), it seems vital that when developing a support framework for this population, this needs to be taken into account. This also highlights that, similar to children with CVI, adults with CVI will have a unique presentation in terms of their visual and health needs, meaning there shouldn’t be a one-size-fits-all approach to support services for this population (McDowell, 2024b). Again, similar to supporting children with CVI and their families, the focus for adults with CVI, should instead be on empowerment and helping them to lead their own rehabilitation programme, supporting them with information and resources to help them make their own informed decisions about their individual needs (McDowell, 2020). However, it is important that the community works together on this with input from the different stakeholders (i.e., adults with CVI, rehabilitation specialists, mental health professionals, and health professionals), to ensure that any potential framework is fit for purpose and meets the needs of all adults with CVI. This is vital, given the mental well-being and physical health complexities that have been highlighted by this research.

From the analysis of the mental well-being data, it is clear that a statistically significant number of adults with CVI in this research experience mental well-being issues, specifically emotional regulation difficulties (66.7%), anxiety (83.3%), and CVI meltdowns (72.7%). Looking at each of these separately, first, in relation to emotional regulation difficulties. As this was self-reported and participants were not asked to provide any further details about their issues, other than that it was regularly experienced, it is difficult to compare this result with other adult populations. Moreover, the term emotional regulation is broad and could include a range of different issues, such as an inability to recognise and respond or to control/modulate certain emotions, or as an inability to adjust emotions to fit different situations. Further research is therefore needed to unpack the specifics of the emotional regulation difficulties experienced by adults with CVI to establish what support is needed.

For anxiety, this prevalence rate is slightly higher than what is reported in low-vision adults (81.7%) (Khurana et al., 2024), but significantly higher than the rates in a typical adult population (10%–15%) (Dobson et al., 2020; Hajek & König, 2020; Sinha et al., 2021). A prevalence rate of anxiety in adults with CVI of more than five times what is experienced by a typical adult population highlights a pressing area of concern for the field. Not only is there a need to help adults with CVI develop strategies to deal with the anxiety when it occurs, but there also needs to be a focus on how this high rate of anxiety can be reduced, both at a societal and an individual level. As CVI meltdowns are unique to people with CVI, it is not possible to compare this prevalence to any other adult population. However, this is another pressing area of concern that requires further research to fully unpack CVI meltdowns, with a focus on establishing what the underlying mechanisms are, how to support someone when they are having a CVI meltdown and how to stop them occurring in the first place.

It is also possible that these mental well-being issues are interconnected and when one is experienced, it can cause a knock-on effect, triggering other issues as well. In particular, unsupported or untreated emotional regulation difficulties may lead to anxiety, which spirals into a CVI meltdown when in a challenging environment. The link between emotional regulation difficulties and anxiety (and also depression) has been shown in recent research looking at a student population in a university setting (Boudriga et al., 2024), highlighting that this hypothesis could indeed be accurate. However, further research is needed to confirm this. In addition, while participants in the research being reported in this article were not asked if they experienced depression, a high number of respondents did list depression as an additional mental health issue they experienced. Any further research therefore should also look at the prevalence of depression in adults with CVI and the link between emotional regulation difficulties, anxiety and depression.

Research has also shown that emotional regulation difficulties due to early life stresses in childhood increases the likelihood of anxiety disorders as adults (Fonzo et al., 2016). When comparing the adult responses to the responses from parents reporting on their child, it is clear that this pattern might be occurring in individuals with CVI. While 67% of adults experienced emotional regulation difficulties and 83% experienced anxiety, the numbers were almost exactly switched for children with CVI. Parents reported that 83% of their children experienced emotional regulation difficulties, while only 66% experienced anxiety. This finding will be further unpacked in the article reporting the children with CVI data, but for now, this difference highlights the need for early emotional regulation support for children with CVI to help reduce the chance of them developing anxiety in the future.

When these mental well-being issues are considered together, these issues suggest that CVI can cause an additional mental well-being burden, which could further impact the overall quality of life for affected adults. This view is supported by the analysis of the impact on day-to-day life data. In relation to the emotional regulation difficulties, two-thirds of the participants reported that these difficulties impacted their day-to-day life ‘A lot’ (38.9%) or ‘A moderate amount’ (27.8%). This suggests that for participants in this research, their emotional regulation difficulties can make daily tasks and activities challenging at times, and they could potentially benefit from strategies to help them better regulate their emotions. A more statistically significant number of adults (72.2%) reported that anxiety had a moderate to high impact on day-to-day life. This again suggests that everyday activities are often made more challenging as a result of their CVI, causing high levels of anxiety. Finally, in regard to CVI meltdowns, again significantly more participants reported moderate to high impact (81.25%), suggesting that CVI meltdowns can greatly impact day-to-day life. These findings provide further evidence of the need for mental well-being support for adults with CVI.

To help understand what environments or contexts can trigger mental well-being issues, participants were asked to identify what factors impacted them the most. Interestingly, while there were similarities across the mental well-being issues, there were also some differences identified. Common triggers for all three were unknown environments, environments with lots of people and movement, cluttered environments and noisy environments. Participants also reported that extreme temperatures caused emotional regulation difficulties and CVI meltdowns. CVI meltdowns were also commonly triggered by changes in routine; however, this did not trigger emotional regulation difficulties and anxiety as much. What was most notable in regard to the environmental or context triggers was that all participants reported at least one trigger for both anxiety and CVI meltdowns, suggesting that these mental well-being issues are highly correlated with environmental and contextual factors. These findings suggest that support for adults with CVI needs to focus on developing visual and overall strategies to help reduce the challenges experienced when in a difficult environment. This finding will be explored in more detail in future publications reporting on the strategies adults in this research use to help reduce the mental well-being issues in different environments or contexts.

In terms of the physical health issues experienced by adults with CVI, while many participants indicated that they experience a number of the issues included in the survey (headaches, migraines, nausea, sore stomach, digestive issues, dizziness, light headedness, tired, getting hungry quickly and physical injuries), only four issues had a prevalence rate that was statistically significant (headaches [76%], nausea [60%], tired [95%], and physical injuries [65%]). While it is impossible to know whether CVI was the direct or only factor that caused these issues, these findings suggest that, for the adults in this research, they experienced these particular health issues significantly more than what would be expected by chance. Individually, these health issues, when experienced regularly, could make daily functioning challenging, but when considered together, the overall additional physical health burden could be immense.

The most significant physical health issue experienced by the adults in this research was tiredness. To quantify this further, the question that was asked in the survey was ‘Are you often very tired?’. So not only are a statistically very significant number of adults with CVI (95%) reporting that they are tired, but they are also indicating that this is a daily issue for them that impacts greatly on their quality of life. This was further supported by the impact on day-to-day life data, with a statistically significant majority reporting that it has a substantial effect (73%). These findings suggest that the constant strain of trying to process and understand confusing and unreliable visual information results in extreme levels of fatigue that could then further reduce visual and overall functioning. This highlights another pressing area of focus for the field – understanding the underlying mechanisms that make daily functioning so exhausting for adults with CVI and finding strategies to either stop this from occurring or reducing the impact of the fatigue levels.

Given the high prevalence rate of tiredness, it is also possible that the other mental well-being and physical health issues feed into this, in addition to the visual issues. For instance, the next most prevalent health issues were headaches, with 76% of participants reporting that they experience these regularly. It is possible that there is a bidirectional relationship between these two health issues, with constant headaches causing tiredness and vice versa, high levels of fatigue causing headaches. However, this would need to be explored further to confirm this. Further research is also needed on the link between headaches and CVI to help understand this possible correlation better. With 50% of the participants reporting that this causes a moderate to high impact on their day-to-day life, adults with CVI could benefit greatly from a better understanding of why they develop headaches regularly and what they could do to help reduce them from occurring.

While the prevalence rate for the other two health issues was not as high (nausea (60%) and physical injuries (65%)), it was still statistically significant and warrants further investigation. However, unlike the other two health issues, the day-to-day impact was not as significant for the adults in this research, suggesting that it only causes a moderate impact, possibly due to not occurring as much. On the other hand, it appears that certain environmental and context triggers were more likely to cause these issues. For example, busy and unknown environments were rated the highest trigger for both nausea and physical injuries, with busy environments with lots of movement and lots of people, and cluttered environments also more likely to cause physical injuries. A similar pattern was seen in the triggers of headaches and tiredness, with the addition of extreme temperatures being linked to nausea and headaches. When considered together, these findings highlight the need for support and strategies for adults with CVI that focus on navigating and interacting in different complex environments. This will be further unpacked in future publications exploring the strategies the adults in this research used to help reduce the impact of the physical health issues.

Another notable finding from this research was in relation to the incidence of autoimmune conditions in this population. Autoimmune conditions can be defined as disorders where the immune system mistakenly attacks the body’s own healthy cells, tissues or organs, leading to inflammation and potential damage (Yasmeen et al., 2024). Just over a quarter (26%) of adults with CVI reported that they also experienced autoimmune conditions in addition to their CVI. While there are significant variations in prevalence of autoimmune conditions across different regions, higher rates are often observed in high-income countries (Cao et al., 2023). As all the respondents to this survey were from high-income countries (i.e., the United States, the United Kingdom, Australia and New Zealand) it is appropriate to make a comparison with prevalence rates from one of these countries. Therefore, in comparison, in the United Kingdom, the prevalence rate is approximately 10.2% (Conrad et al., 2023). The prevalence rate of 26% in this research is significantly higher, indicating that adults with CVI may experience autoimmune conditions at a higher rate than a typical adult population. However, further research exploring the incidence of autoimmune conditions in adults with CVI would need to be conducted to confirm this, with a specific focus on understanding what is driving an increased prevalence rate if this is the case.

Conclusion

While adults with CVI have been sharing that they experience additional mental well-being and physical health issues for a while now, this is the first research study that has explored this phenomenon in any depth. As such this study has provided useful insights into the additional mental well-being and physical health burdens many affected adult’s experience, the significant impact they have on their day-to-day life and the environments that can exacerbate these issues. These insights can be used to help ensure more effective wraparound services are provided for adults with CVI, with a focus on visual, mental well-being and physical health support. However, when doing this, it is important that the adults with lived experience are included in the development of a more holistic support framework. They are the experts on their experiences and need to be listened to. This exploratory study also helped to identify a number of areas where further research is needed to better understand the unique experiences of adults with CVI, which have been highlighted throughout the results and discussions sections. An important component of any further research would be to also explore what supports need to be in place for children with CVI to ensure that they do not end up experiencing worsening mental well-being or physical health issues as they transition into adulthood.

Limitations

This study, which explored the mental well-being and physical health issues of adults with CVI, relied exclusively on an internet-based survey, which presents several limitations. First, the sample size was relatively small, which limits the statistical power of the findings. In addition, the use of an online format inherently excludes individuals with CVI without internet access or those less comfortable with digital technology, introducing an unknown sampling bias. The voluntary nature of participation may also have contributed to self-selection bias, as individuals with CVI and personal experiences with related health concerns may have been more inclined to respond. As we were analysing the data we found that due to the limitations of some of the closed-ended survey design, certain complex aspects of mental and physical health may not have been fully captured or explored which is why we urge further participatory research in this area.

While this exploratory study provides valuable initial insights, future research would benefit from more comprehensive statistical reporting, including standard deviations and confidence intervals for factor counts and environmental triggers. The current analysis focused on prevalence patterns and significance testing, but more detailed descriptive statistics would enhance understanding of the variability in participant experiences. An important limitation of this exploratory study is that we examined mental well-being and physical health issues separately rather than investigating their inter-relationships. The bidirectional nature of CVI and associated symptoms suggests complex interactions between variables, for example, how anxiety levels may correlate with fatigue severity, or how environmental triggers for CVI meltdowns relate to physical injury frequency. Future research with larger sample sizes should employ correlation and regression analyses to map these relationships, which would inform more targeted intervention strategies. Understanding these interconnections could reveal whether addressing one primary issue (such as anxiety management) might have additional benefits for other symptoms.

Furthermore, this study included participants who self-identified as having CVI but did not possess a formal diagnosis. While this decision was made deliberately to avoid discriminating against individuals who face significant barriers to obtaining adult CVI diagnoses in many countries, it introduces methodological complexity. The lack of standardised diagnostic confirmation may affect the precision of findings and their generalisability. However, given that many adults with clear visual difficulties consistent with CVI remain undiagnosed due to limited health care awareness, inadequate assessment services, and poor diagnostic pathways, excluding these individuals would have undermined our research’s person-centred and empowerment-focused approach. This inclusive methodology reflects the real-world challenges faced by the CVI community, but should be considered when interpreting results.