Mental Health and Quality of Life in Children and Young People with Vision Impairment: A Systematic Review

Abstract

A systematic review was conducted to understand mental health, including emotional problems and well-being, self-perception, self-esteem, and quality of life (QoL), in children and young people with vision impairment (CYPVI) aged 6–25 years. Following PRISMA guidelines, we identified 6,623 records and included 21 studies in our analysis that met the inclusion criteria: (a) sample had an age of 6–25 years, (b) quantitative and qualitative studies; (c) reporting on mental health, QoL, self-perception and other similar outcomes and (d) either child-reported; parent-reported; clinician-reported or any combination thereof. Our data represented samples from 12 countries. Our review found that overall CYPVI often experience worse mental health and psychosocial development. The decline in mental health among CYPVI is frequently linked to the inaccessibility they encounter across various life contexts. The findings highlighted the importance of social support from friends and families for CYPVI enabling them to thrive in school and social contexts.

Lay abstract

This study explored the mental health of children and young people with vision impairment (ages 6–25). We reviewed 21 studies from around the world and found that many children and young people with vision impairment experience challenges with their mental health, including anxiety, depression, and low self-esteem. These difficulties often stem from barriers they face in daily life, such as limited access to education and social activities.

Our findings emphasize the crucial role of strong social support from family and friends in helping these children thrive. This support can improve their emotional well-being, self-confidence, and overall quality of life.

This study highlights the need for interventions that address the unique mental health needs of children with vision impairment and provide them with the support they require to lead fulfilling lives.

Keywords

vision impairment neurodiversity mental health quality of life

Introduction

Vision impairment (VI) impacts 2.2 billion people globally (World Health Organisation, 2023), including about 19 million children and young people (Khabazkhoob et al., 2022; Solebo & Rahi, 2014). VI encompasses a range of eye- or brain-based differences that disrupt neurotypical visual processing. The World Health Organisation (WHO) classifies VI by severity – mild, moderate or severe – and includes significant impairments in distance and near vision, as well as blindness (Solebo & Rahi, 2014; World Health Organisation, 2024).

The prevalence of VI increases with age and different challenges are experienced from each age group. Early onset VI disturbs the developing child's ability to engage in a predominantly neurotypical world (Wall, 2019) intensifying challenges, the risk of stress, anxiety, and depression compared to neurotypically sighted peers (Demmin & Silverstein, 2020; Langelaan et al., 2007). Evident poorer mental health and quality of life (QoL) is documented amongst children and young people with vision impairment (CYPVI). Limitation in independence, social interaction, adverse academic experiences and low self-esteem are prognostic of those poor mental health trajectories (Tadić et al., 2016).

Previous studies and systematic reviews have demonstrated the suboptimal mental health development of CYPVI (Augestad, 2017a; Augestad, 2017b; Hayton & Dimitriou, 2019; Li et al., 2024). With more recent evidence from the pandemic, highlighting increased social isolation and disruption in healthcare and education, as noted in other underrepresented groups (see Castle et al., 2024). However, CYPVI often faced additional barriers due to lack of accessibility in remote learning and telehealth services (Ejimanya & Komolafe, 2020; Gothwal et al., 2021; Heinze et al., 2021). To fully understand CYPVI's mental health, it is essential to consider moderating and mediating effects of age, gender, self-concept, culture, socio-economic status (SES), and access to support systems (Augestad, 2017a; Augestad 2017b).

This systematic review critically aims to explore mental health and QoL outcomes among CYPVI through the lens of the neurodiversity paradigm. Reconceptualising VI as a form of neurodivergence – analogous to sensory and cognitive neurodivergences such as autism and attention-deficit/hyperactivity disorder (ADHD) – facilitates a shift away from individualised, pathology-oriented models. Existing literature frequently presupposes a direct correlation between the severity of vision loss and poor mental health outcomes (e.g., Li et al., 2024), thereby reinforcing a deficit model. In contrast, neurodiversity-informed approaches, prioritise lived experience, adaptive strengths, and the significance of inclusive contexts (Robertson et al., 2020). Recent work in neurodevelopmental research highlights the role of social framing and systemic support in shaping developmental trajectories and mental health (Sonuga-Barke, 2024). An intersectional lens further highlights how age, ethnicity, socioeconomic status, parental resources and co-occurring neurodivergences influence access to supportive environments and opportunities for inclusion (Jessup et al., 2018). This framework challenges traditional impairment-focused narratives and advocates for structural changes that foster belonging, resilience, and holistic QoL for CYPVI.

Recent studies and systematic reviews highlight the poor QoL amongst CYPVI with specific eye conditions (Buffenn, 2021; Khadka et al., 2012; Li et al., 2024), and great discrepancies between parent–child reports exist (Chadha & Subramanian, 2011). Yet little is known whether the child–parent report discrepancies are universal for all conditions under the VI umbrella, or if researchers in VI rely heavily on parent-reports (Koot, 2020). Raising critical questions about how these differing perspectives are interpreted in the context of educational and healthcare decisions (De Los Reyes, 2011), the extent of support required for CYPVI to independently complete such assessment tasks (Tadić et al., 2016), and how context shapes their reports and experiences (see Tadić et al., 2020 for recent inquiry on the association of contextual factors, e.g., age, and QoL in VI).

Our primary aim was to synthesise the evidence on the mental health and QoL in CYPVI published from 2017 onwards. This timeframe was selected for two key reasons: first, to build on rather than duplicate existing reviews (see Augestad, 2017a; Augestad 2017b); and second, to capture recent developments in the field. The period following 2017 has been marked by significant societal changes – including global economic crises, the coronavirus disease 2019 (COVID-19) pandemic, and geopolitical instability – that have reshaped mental health trends (BMA, 2024). Alongside these, cultural shifts towards more inclusive discourse and research have influenced how mental health is studied, particularly in non-neurotypical populations (Chapman, 2021; Cutler, 2019). By situating our review within this evolving landscape, we provide a timely and contextually relevant synthesis of contemporary research.

Secondary exploratory aims focused on examining the agreement between children and parents regarding mental health and QoL outcomes, methodological implications of the studies, as well as study moderators and mediators within the identified studies i.e., SES; co-occurring neurodivergences such as autism. Finally, we explored whether the heterogeneity in conditions of VI explained variations in mental health and QoL.

Method

A protocol was created for this review following the Open Science Framework guidelines. It is available online (see Cheng et al., 2024).

A systematic review was conducted through four databases (Medline Ovid, PubMed, Scopus and APA PsychInfo). Each database was searched between January 2017 to February 2024 for titles, abstracts and keywords, using the following search terms: (visual impairment* OR vision impairment* OR vision loss OR visual disability* OR severe sight impairment OR blindness OR low vision OR residual vision OR ocular disease* OR corneal disease* OR retinal disease* OR optic nerve disease* OR sensory deprivation) AND (child* OR adolescent* OR young adult OR young people OR paediatric OR paediatric OR juvenile OR early onset) AND (mental health OR well-being OR wellbeing OR stress OR anxiety OR anxiety disorder* OR depression OR depressive symptom* OR mood disorder* OR mental disorder* OR quality of life OR self-concept OR self-esteem OR psychological problem* OR psychosocial problem* OR psychosomatic problem* OR emotional problem*). The search was restricted to studies with human subjects and published in or officially translated into English. Only studies that have been fully published and peer-reviewed were considered for inclusion. A repeated search was conducted in July 2024; however, no further publications were identified.

Studies were excluded following the inclusion/exclusion criteria (see Table 1) and checked using PRISMA guidelines. VI was defined as any visual conditions that cannot be corrected with prescribed glasses or lenses, either caused by physical damage to the eye (e.g., glaucoma, retinal detachment) or underlying health conditions (e.g., diabetic retinopathy, congenital conditions). Papers reporting on children (6–12 years), adolescents (13–18 years) and young adults (19–25 years) were eligible due to the limitation of accurate mental health measures that account for the younger populations. The broad age group afforded the opportunity to include and examine children and young people across schools and educational institutions and understand better the reasons why CYPVI might take additional years to complete their studies (Reed & Curtis, 2012).

Table 1.

Inclusion and Exclusion Criteria.

Inclusion	Exclusion
Studies with participants aged 6–25 years.	Studies focusing on individuals who have undergone successful vision correction, where the primary aim is to assess pre- and post-treatment mental health outcomes.
Observational studies (both qualitative and quantitative studies).	Intervention studies, conference proceedings, studies not in English, other reviews or studies not based on collected data.
Studies that report mental health, self-perception, and quality of life (QoL) outcomes including emotional well-being, mood disorders, depression or depressive symptoms, anxiety disorders, stress, self-concept or self-esteem, and health-related or vision-related QoL.	Studies with less than 10 participants.
Studies where outcomes are either child-reported; parent-reported; clinician-reported or any combination thereof.	Quantitative studies that do not use standardised assessment tools for outcomes or lack clear diagnostic.

A range of methodologies was eligible for inclusion in this review to provide a holistic view of the findings. Comparative studies with age-matched typically sighted control and age-matched control who had undergone successful treatment with corrected-to-normal vision were also included. Other observation studies with no comparator and no control group that reported factors associated with mental health outcomes were also included. Finally, the studies that compared the perceived mental health outcomes between children and their parents were eligible for inclusion. However, studies with fewer than ten participants, studies not based on collected data, and studies that engage interventions were excluded. Our decision to exclude both quantitative and qualitative studies with fewer than 10 participants was due to the increased risk of bias of those studies considering the heterogeneity of VI and how studies often include participants with various VI types. The primary outcome measures were mental health, self-perception and QoL, including emotional well-being, mood disorders, depression or depressive symptoms, anxiety disorders, stress, self-concept or self-esteem, and health-related or vision-related QoL. Additional outcomes such as suicidal behaviour, substance use, and loneliness were included as CYPVI are prone to such conditions (Hadidi et al., 2013; Lee et al., 2022). All outcomes had to be measured using standardised assessment tools or a clear diagnostic report was available for inclusion.

Studies after deduplication were screened against the inclusion and exclusion criteria by YC. The reliability of the review was ensured by double screening for both the titles/abstracts and full texts by a second screener (SW). A random 10% sample of titles/abstracts (n = 539) was double screened and a random 15% sample of full texts (n = 11) was double screened. Any discrepancies were resolved by discussion between the two screeners (YC; SW) and any further disagreements were resolved by JH and VS. The inter-rater agreement was 99% (Kappa = 0.80) for the titles/abstracts screening, indicating strong agreement (McHugh, 2012). The inter-rater reliability was 91% (Kappa = 0.75) for the full text, indicating moderate agreement. Details of the number of studies identified from each database, stages of inclusion and exclusion, and exclusion reasons are presented in the PRISMA flowchart in Figure 1.

Figure 1.

A PRISMA Flowchart Diagram for the Study Inclusion Process.

A Mixed Methods Appraisal Tool (MMAT) Version 2018 was used for quality appraisal and evaluation of the included studies. This critical appraisal tool was developed for reviews that include quantitative, qualitative and mixed-method studies and has been used in published reviews. All included studies met the minimum criteria for methodological quality. The two qualitative studies demonstrated high coherence between research questions, data collection, and interpretation. Among the 19 quantitative studies, most showed strong internal validity, although some studies lacked clear definition of VI or used outcomes measures not validated for the CYPVI population. A summary of the MMAT ratings is provided in Supplemental Table 1.

Results

Abstracts and citations of papers from database search (n = 6623) were imported into EndNote 21. Duplicates were removed using the ‘Find Duplicates’ tool and manual de-duplication. A further backward search through citations was conducted. Notably, one study (Belson et al., 2022) was a secondary data analysis based on an existing data set of another included study (Belson et al., 2022) with a similar study objective. Therefore, the secondary study was excluded and only Belson et al. (2022) was included in the synthesis. As the study sample remains the same, the exclusion does not lead to missing findings. In total, 21 studies were eligible for inclusion in this review (See Table 2 for participant information and Table 3 for study information).

Table 2.

Participant Information.

Paper	Country	Sample	VI Category	Severity	SES	Co-occurring Conditions	Gender
Akram and Batool, 2018	Pakistan	n = 537	Mixed	Not reported	Not reported	Not reported	Men = 311, women = 226
Anderson et al., 2020	Australia	n = 21	Mixed	Severe	Not reported	9 reported additional co-occurring conditions (i.e., learning disabilities and mental health conditions)	Men = 15, women = 6
Bathelt et al., 2019	UK	n = 18	Mixed	Moderate	Not reported	No additional co-occurring conditions	Men = 9, women = 9
Belson et al., 2022	United States	n = 101	Retinoblastoma	n = 89 Severe n = 87 No VI	Middle-income	24 reported additional co-occurring conditions: 19 reported chronic medical condition (i.e., asthma, hearing loss, and thyroid problems) 5 reported a psychological / mental health chronic condition ((i.e., anxiety, depression, or attention-deficit/hyperactivity disorder [ADHD]) 4 reported second malignant neoplasm/metastasis	Men = 50, women = 51
Elsman et al., 2021	Netherlands	n = 250 child–parent pairs	Mixed	Mild VI = 47 Moderate VI = 69 SVI = 4 Blind = 22 No VI = 103 Unknown = 5	Middle-income	118 reported additional co-occurring conditions	Men = 148, women = 102
Elsman et al., 2018	Netherlands	n = 172	Mixed	Mild VI = 75 Moderate VI = 61 SVI/Blind = 35 Unknown = 1	Middle-income	79 reported additional co-occurring conditions: 70 (40.7%) reported co-occurring conditions which weren’t specified 9 reported cognitive impairment	Men = 79, women = 93
Giese et al., 2017	Germany	n = 155	Mixed	Not reported	Not reported	No additional co-occurring conditions	Men = 67, women = 48
Haegele et al., 2019	United States	n = 22	Mixed	B1 = 8, B2 = 5, B3 = 9	Not reported	No additional co-occurring conditions	Men = 12, women = 10
Leksaranyaphong and Suppapitiporn, 2021	Thailand	n = 77	Mixed	Not reported	Not reported	9 reported additional co-occurring conditions	Men = 34, women = 43
Li et al., 2023	China	n = 405	Mixed	Not reported	Low-income (predominantly)	Not reported	Men = 983, women = 1009
Magdalene et al., 2021	India	n = 442	Mixed	VI = 124, SVI = 16, Blind = 370, No VI = 5	Not reported	Not reported	Men = 265, women = 177
Meer et al., 2022	United States	n = 180,297	Mixed	Not reported	Low-income	111,100 reported additional co-occurring conditions	Men = 89,738, women = 90,519
Oliveira et al., 2018	Portugal	n = 18 child–parent pairs	Mixed	Severe	Not reported	Not reported	Men = 8, women = 10
Robertson et al., 2021a	UK	n = 17	Mixed	Low vision = 1, Moderate VI = 11, SVI = 2, Blind = 3	Low-middle income (predominantly)	No additional co-occurring conditions	Men = 10, women = 7
Robertson et al., 2021b	UK	n = 84	Mixed	Low vision = 35, VI = 21, Moderate VI = 18, SVI/Blind = 10	Low-middle income	No additional co-occurring conditions	Men = 41, women = 43
Robertson et al., 2021c	UK	n = 152 parent–child pairs	Mixed	VI = 120, SVI/Blind = 32	Low-middle income (predominantly)	No additional co-occurring conditions	Men = 85, women = 67
Semrov et al., 2023	UK	n = 151	Mixed	VI = 120, SVI/Blind = 31	Low-middle income (predominantly)	26 reported additional co-occurring conditions	Men = 84, women = 67
Tadić et al., 2016	UK	n = 90 child–parent pairs	Mixed	Mild VI = 43, Moderate VI = 35, SVI = 10, Blind = 11	Low-middle income (predominantly)	No additional co-occurring conditions	Men = 57, women = 42
Tailor et al., 2017	UK	n = 38	Congenital and secondary cataract	Not reported	Not reported	Not reported	Men = 34, women = 38
Valconcha et al., 2020	Philippines	n = 67	Mixed	Mild VI = 21, Moderate VI = 17, Severe unilateral VI = 17, Severe bilateral VI = 12	Low-income	No additional co-occurring conditions	Men = 32, women = 35
Vlasova et al., 2019	Ukraine	n = 95	Mixed	Not reported	Not reported	Not reported	Not reported

VI: vision impairment; SES: socio-economic status; SVI: severe VI.

Table 3.

Study Information.

Paper	Methodology	Outcome	Measure(s)	Reporter	Effect	How Established
Akram and Batool, 2018	Quantitative	Suicidal behaviour	Standardised	Self-reported	Negative	Significance testing
Anderson et al., 2020	Qualitative	Sense of identity	Interviews and focus groups	Self-reported	Mixed	Descriptive measure
Bathelt et al., 2019	Quantitative	Wellbeing quality of life (QoL)	Standardised	Parent	Negative	Significance testing
Belson et al., 2022	Quantitative	QoL Self-esteem	Standardised	Self-reported	QoL: No significant difference. Self-esteem: Negative	Significance testing
Elsman et al., 2021	Quantitative	QoL Child–parent discrepancy	Standardised	Child and Parent	Mixed due to child–parent disagreement (children reported better QoL)	Significance testing
Elsman et al., 2018	Quantitative	QoL	Standardised	Self-reported	Negative	Significance testing
Giese et al., 2017	Quantitative	Emotional wellbeing	Standardised	Self-reported	No significant difference	Significance testing
Haegele et al., 2019	Quantitative	Psychological well-being	Standardised	Parent	Negative	Significance testing
Leksaranyaphong and Suppapitiporn, 2021	Mixed methods	Anxiety	Standardised	Self-reported	Mixed (Anxiety associated with gender, education, friends, finance, environment and family)	Descriptive measure
Li et al., 2023	Quantitative	Depression, anxiety, stress	Standardised	Self-reported	Mixed	Significance testing
Magdalene et al., 2021	Quantitative	QoL; Anxiety and stress;	Standardised	Self-reported	Negative	Descriptive measure
Meer et al., 2022	Quantitative	Anxiety disorder; Depressive disorder; Substance use/addictive disorder; bipolar disorder; Schizophrenia	Standardised	Clinician	Negative	Significance testing
Oliveira et al., 2018	Quantitative	QoL; Child–parent discrepancy	Standardised	Child and Parent	Mixed due to child–parent disagreement (children reported better QoL)	Significance testing
Robertson et al., 2021a	Qualitative	Identity and self-concept	Semi-structured interview	Self-reported	Mixed	Descriptive measure
Robertson et al., 2021b	Quantitative	QoL	Standardised	Self-reported	Neutral	Descriptive measure
Robertson et al., 2021c	Quantitative	QoL; Child–parent discrepancy	Standardised	Child and Parent	Mixed due to child–parent disagreement (children reported better QoL)	Significance testing
Semrov et al., 2023	Quantitative	QoL	Standardised	Self-reported	Mixed	Significance testing
Tadić et al., 2016	Quantitative	QoL; Child–parent discrepancy	Standardised	Child and Parent	Mixed due to child–parent disagreement (children reported better QoL)	Significance testing
Tailor et al., 2017	Quantitative	QoL; Child–parent discrepancy	Standardised	Child and Parent	Mixed due to child–parent disagreement (children reported better QoL)	Significance testing
Valconcha et al., 2020	Quantitative	QoL	Standardised	Self-reported	Negative	Significance testing
Vlasova et al., 2019	Quantitative	Self-perception Emotional comfort	Standardised	Self-reported	Negative	Significance testing

The included studies represented samples from 4 continents and 12 countries: Asia (China = 1, India = 1, Pakistan = 1, Philippines = 1, Thailand = 1), Europe, (UK = 7, Netherlands = 2, Germany = 1, Portugal = 1, Ukraine = 1), North America (United States = 3) and Oceania (Australia = 1). While most studies included European countries and Western cultures, the diverse population in Asian countries was also well-represented as the studies from that region had the biggest sample sizes (Akram & Batool, 2018; Leksaranyaphong and Suppapitiporn, 2021; Li et al., 2023; Magdalene et al., 2021; Valconcha et al., 2020).

Studies used different approaches to investigate mental health in CYPVI. Eighteen studies employed quantitative methods, of which ten studies included self-reports from CYPVI and the remaining eight reports from parents, clinicians or from any combination thereof. Two studies were qualitative (Anderson et al., 2020; Robertson et al., 2021a) with both reporting data directly from CYPVI, similarly to the one study that used mixed methods (Leksaranyaphong and Suppapitiporn, 2021). With overall, 13 studies including self-reports and the remaining a mix of parent, clinical and parent–child reports (see Table 3).

Due to the nature of the research objectives, all included studies were cross-sectional. Out of the 21 included studies, nine studies examined the mental health of CYPVI, including suicidal behaviour, anxiety, depression, stress, other mental health conditions and general emotional/psychological well-being. In addition, 12 studies examined the QoL, which is closely related to mental health. Four other studies reported different outcomes of interest, including the sense of identity and self-esteem. The included studies used different measures which are all standardised or translated versions of standardised measures, except Meer et al. (2022) which used mental health diagnoses.

In this review, 12 included studies were comparative, of which eight had a sighted or healthy age-matched control group and four evaluated results using the population normative scores. Two qualitative studies examined the impact descriptively - where CYPVI reported on their mental health. In addition, three studies reported the associated factors of mental health and QoL outcomes. Four studies examined the discrepancy between child-reported and parent-reported outcomes.

The studies differed in terms of their sample characteristics¹. The sample sizes varied from 17 to 180,297. The age of the participants ranges from 6 to 25 years, with a mean age of 11.01. Studies had wide age-ranges of at least three years. Overall, the gender ratios reflected a relatively even distribution of women (50.1%) and men samples (49.9%). Four of them found that women had more self-reported anxiety and depression (Belson et al., 2022; Leksaranyaphong and Suppapitiporn, 2021), lower QoL (Oliveira et al., 2018) and greater child–parent discrepancy (Tadić et al., 2016), whereas one study (Akram and Batool, 2018) found that men are at higher risk of self-reported suicidal behaviour. Samples were collected from clinics and hospitals (n = 9), schools and education institutions (n = 6) and other VI-related services (n = 3). One study derived data from an existing dataset. Studies also differed in terms of the type of VI and the researchers adopted different definitions of VI. Most studies included participants with various diagnoses of VI (n = 19), with one study examining the sample of retinoblastoma survivors (Belson et al., 2022) and one study examining the impact of paediatric cataracts (Tailor et al., 2017).

Eight studies excluded CYPVI with other co-occurring physical conditions such as illness, 6 studies did not report health conditions, and seven studies reported co-occurring conditions. Among the seven studies that reported co-occurring conditions, the percentage of it ranges from 9.1% to 61.6%. For example, Anderson et al. (2020) found that nine CYPVI reported learning disabilities and mental health conditions; Elsman et al. (2018) found that nine CYPVI had cognitive impairments in addition to those with co-occurring conditions (n = 70); Belson et al. (2022) found that CYPVI had chronic medical (n = 19) and psychiatric conditions (n = 5) and second malignant neoplasm/metastasis (n = 4); Leksaranyaphong and Suppapitiporn (2021) reported nine CYPVI with additional illness; Meer et al. (2022) reported that the 61.6% of the VI group had at least one co-occurring condition, but did not specify the type of conditions. Šemrov et al. (2023) found that CYPVI who had additional co-occurring conditions had worse QoL, and Elsman et al. (2021) found that co-occurring conditions ranging from allergies to ADHD (n = 118) were associated with greater child–parent discrepancy.

Thirteen studies reported family SES (and parental income) or the effect of SES, in which four of them found that lower SES or coming from deprived/disadvantaged families led to lower QoL, more anxiety but less suicidal behaviour and greater child–parent agreement. Four studies showed no association between SES and mental health (Li et al., 2023; Robertson et al., 2021a; Robertson et al., 2021b; Valconcha et al., 2020). Five studies that showed a negative effect had participants with low to middle SES. Additionally, three studies showed that higher parental education level was associated with less anxiety (Li et al., 2023), higher QoL (Šemrov et al., 2023) and greater child–parent agreement (Elsman et al., 2021;).

Mental Health and Well-Being

The included studies reported the impact of a broad range of mental health outcomes, including mental health conditions and emotional well-being of which two studies only examined the prevalence and associated factors with these impacts. The prevalence of anxiety and stress was relatively high: Magdalene et al. (2021) showed that 56.56% of CYPVI showed anxiety and stress; and Leksaranyaphong and Suppapitiporn (2021) found that 33.8% and 45.5% of CYPVI had state anxiety and trait anxiety respectively. Overall, CYPVI experience an increased number of mental health challenges when compared to control groups.

Three studies examined the impact of anxiety, stress, depression and other mental health conditions in CYPVI, and the findings are mixed. In total, two studies reported an overall negative impact, and one study reported a mixed effect. Meer et al. (2022) showed that CYPVI had a higher prevalence of mental illness diagnoses including anxiety, depression, bipolar disorder and schizophrenia compared to control groups (vision and hearing impairment/no VI). Akram and Batool (2018) found a higher prevalence and odds ratio of overall suicidal behaviour among vision-impaired teenagers and young adults compared to those with hearing impairment and without sensory impairment. In contrast, Li et al. (2023) found a mixed result: anxiety and depression symptoms were observed at the same level for children with or without VI, whereas there was a higher prevalence of extremely severe stress symptoms in children with VI.

Numerous studies broadly addressed the general emotional/psychological well-being of CYPVI, most reporting negative impacts of VI (75%). For example, Haegele et al. (2019) reported that CYPVI had lower prosocial scores and higher difficulty scores than their sighted siblings. Bathelt et al. (2019) suggested a smaller impact for children with mild to moderate VI compared to severe to profound VI. However, no effect was seen in Giese et al. (2017) which examined the emotional well-being of CYP-VI, and the outcomes were not associated with the severity of VI but rather support systems around them.

The studies reported several related factors to the mental health in CYPVI. Giese et al. (2017) suggested that higher levels of emotional well-being were associated with good body composition values but not the severity of VI. Leksaranyaphong and Suppapitiporn (2021) highlighted that women were at higher risk for anxiety. Having good relationships with friends and family, high socioeconomic status and meeting educational needs also correlated with lower anxiety. Similarly, Vlasova et al. (2019) found that CYPVI attending residential schools demonstrated lower emotional comfort, whereas those attending special classes in mainstream schools showed better socialisation and emotional comfort. Akram and Batool (2018) stated an association between SES and suicidal behaviour, with individuals from the most deprived backgrounds being more likely to report suicidal tendencies.

When looking at the qualitative studies, Anderson et al. (2020) offer important ideas from first-hand accounts of 21 adolescents’ contributions advocated a broader vision rehabilitation focus that supports the ongoing balancing of the important elements of a young person's life that contribute to their life quality and fall across four key life domains: social connection, physical health, capability, and control. Similarly, Robertson et al., (2021a) makes a similar argument but this time researchers discuss how the following key domains can have a great impact on the mental health and QoL of CYPVI: (a) social support and relationships; (b) health services and integration and (c) psychosocial challenges, highlighting the importance of relationships and the sense of self. These studies together add strong evidence about a range of mediating and moderating factors when addressing mental health of CYPVI, something that the quantitative studies fail to do. For example, Anderson et al., (2020) and Robertson et al., (2021a) discuss the importance of looking at social support networks, school relationships, health care policies and overall externals social determinants of mental health. Similarly, Leksaranyaphong and Suppapitiporn (2021), in their mixed-methods study, highlighted that anxiety in CYPVI is associated with gender, education, friends, finances, environment and family, highlighting the importance of psychosocial factors in mental health. But also adding to the broader understanding of the multifaceted factors influencing mental health in this population.

Self-Concept

The outcomes relating to the sense of self were explored in four studies and the results were mixed. Negative impacts were indicated in two studies. All four studies had adolescent samples. Belson et al. (2022) illustrated that the self-esteem of CYPVI (in the retinoblastoma group) was significantly lower than healthy controls. Equally, Vlasova et al. (2019) found that adolescents with VI found it difficult to accept their impairment and exhibited low to moderate self-perception scores. Conversely, one study used a qualitative design to examine the sense of identity and demonstrated mixed and neutral findings (Anderson et al., 2020). Young adults with VI frequently raised their sense of identity and what they valued within, and they were aware of their self and identity as a product of their unique circumstances. The other quantitative study also showed mixed results that adolescents with early onset VI frequently described VI as their personal attribute that made them unique and interesting, whereas those who had full functional vision before VI onset reported a complex transition in self-acceptance (Robertson et al., 2021a).

Quality of Life

QoL was also examined (n = 8), with two studies focusing on the determinants of QoL. Most studies that compared the QoL between CYPVI and sighted controls or normative scores reported a negative impact and poorer QoL for CYPVI (Bathelt et al., 2019; Elsman et al., 2018; Magdalene et al., 2021; Tailor et al., 2017; Valconcha et al., 2020), except Belson et al. (2022) that found a similar QoL score to controls which was explained by the middle-class retinoblastoma sample with insurance that covered ocular prosthetics.

Several studies identified individual characteristics, environmental factors and clinical status that are related to the QoL of CYPVI, even though there were mixed findings. Oliveira et al. (2018) found that QoL was higher in the men group and children. Higher QoL in CYPVI was also associated with higher socioeconomic status and attending mainstream schools compared to home-schooled or specialist schools (Šemrov et al., 2023). In addition to the above-mentioned factors, four studies also showed that QoL scores were negatively associated with the severity of VI, that CYPVI with mild VI exhibited higher QoL scores than those with severe VI (SVI) or blindness (Bathelt et al., 2019; Elsman et al., 2018; Oliveira et al., 2018; Valconcha et al., 2020). In contrast, the two studies that only examined QoL determinants reported that the severity of VI was not associated with the QoL scores (Robertson et al., 2022; Šemrov et al., 2023). Specifically, Robertson et al. (2022) showed that CYPVI with progressive and early-onset VI scored higher in QoL though it did not reach the statistical significance threshold. On the other hand, Šemrov et al. (2023) found that better QoL was associated with self-perceived functional vision rather than the clinical status of their VI.

Child–Parent Discrepancy on QoL Outcomes

Five studies examined the child–parent agreement on the QoL outcome measure (Elsman et al., 2021; Oliveira et al., 2018; Robertson et al., 2021; Tadić et al., 2016; Tailor et al., 2017). Among the five studies, there is a consistent finding that parents reported a declined QoL of their children compared to the children and young people's own rating. There is a wide range of disagreement that parents both underestimated and overestimated their child's QoL. Specifically, the extent of child–parent disagreement varied by sociodemographic and clinical factors. For example, Robertson et al. (2021) found that for each one-year increase in the child's age, there were 1.18 greater odds of children self-reporting higher vision-related QoL than their parents. Similarly, Tadić et al. (2016) reported a greater child–parent agreement for children with more severe, late-onset and progressive VI, due to greater communication and parental vigilance on the illness. In addition, Oliveira et al. (2018) reported that parents had a better perception of the ‘Parent Relations and Home Life’ dimension but overestimated their child's QoL scores for ‘Social Acceptance (Bullying)’ and ‘Moods and Emotions’.

Impact of Methodology on Findings

The role of methodological characteristics was examined to better contextualise the outcomes of this review. There was a dearth of studies that involved in participatory or coproduced research or reporting community involvement. Only one study was identified where the first author's own experiences as a young person with VI was used, which allowed disruption of the researcher-participant imbalances. They also engaged participants with a member-checking focus group process. In Bathelt et al. (2019), the experimenter was trained by a neurodisability paediatrician specialised in VI, and Magdalene et al. (2021) had a team comprising of an Ophthalmologist and optometrists. However, except for Anderson et al., (2020), no other study has put consideration of involving CYPVI to better elicit their views about their mental health. Two out of the three studies that employed some sort of coproduction design reported negative mental health outcomes in CYPVI, suggesting that these methods may be better positioned to surface complex or underreported experiences. This highlights the potential of co-production and participatory approaches to generate more meaningful insights, particularly in populations who are often marginalised in research.

Eighteen studies employed quantitative methodologies, the majority of which reported evidence of a negative impact of visual impairment on mental health and QoL. These studies primarily relied on significance testing and the use of standardised outcome measures. While such tools offer consistency, they often reflect normative assumptions embedded within deficit-based frameworks, potentially limiting the scope of what is measured and how outcomes are interpreted. The prevalence of this methodological approach may contribute to the perpetuation of dominant narratives in VI research – narratives that foreground internal struggle and pathology over contextual or structural influences.

Although the findings varied, one study reporting predominantly negative outcomes and the other mixed, they still offered deeper insight into the lived realities of CYPVI, highlighting the complexity and individuality of mental health experiences. Additionally, one study adopted a mixed-methods design, combining standardised assessments with qualitative narratives to yield a more comprehensive understanding. This integrated approach underscores the value of methodological plurality in capturing both general trends and nuanced, context-sensitive perspectives, and supports a shift towards more inclusive neurodiversity informed research.

Nineteen studies utilised standardised measures. Of these, 14 studies focused on mental health/QoL, with more than half (n = 9) reporting negative outcomes. Four studies examined child–parent discrepancy in QoL, all showing evidence of child–parent disagreement (as explained above). One study focused on self-perception and emotional comfort rather than mental health or QoL and showed negative outcomes amongst CYPVI. The two studies that used interviews/focus groups to measure mental health/wellbeing showed mixed outcomes.

Finally, in terms of who reported the outcomes, of the 13 self-reported studies only six showed negative outcomes, with the remaining showing mixed or inconclusive outcomes. Whereas the studies that were reported by parents (n = 2) showed negative outcomes, similarly to the studies that either were reported by both children-parents (n = 1, not including the four studies that examined child–parent disagreement) and clinicians (n = 1).

Discussion

Previous reviews have revealed alarming mental health trends in CYPVI (Augestad, 2017a; Augestad, 2017b; Demmin & Silverstein, 2020; Langelaan et al., 2007; Li et al., 2024). However, our systematic review extends these findings by situating CYPVI's mental health and QoL outcomes within the neurodiversity paradigm, shifting the focus from individual deficits (i.e., severity) to the broader societal and environmental factors shaping their experiences. A total of 21 studies met the inclusion criteria and included in the current systematic review. Below, we provide an overview of key findings, provide recommendations for future research and discuss limitations in the current review and literature.

Out of the 21 studies reviewed, eight studies focused on mental health with six studies (75%) reporting poorer mental health amongst CYPVI. However, this is not surprising as global mental health trends have been on the decline in neurodivergent populations since 2020 (Castle et al., 2024). SES determined anxiety levels amongst CYPVI, with the least privileged ones being more affected. A well-established relationship in neurotypical (e.g., see Kirkbride et al., 2024), and other neurodivergent populations (see Mahjoob et al., 2024). Nevertheless, gender differences were only evident in two studies examining mental health, limiting our conclusions. Similarly, the evidence on the association between VI severity and mental health outcomes remains inconclusive; while some studies reported a link between greater severity and poorer outcomes (Bathelt et al. 2019), others found no clear pattern, preventing definitive conclusions (Giese et al., 2017). Yet these inconclusive outcomes are not surprising as researchers still lack a good understanding of the causes of mental health conditions in CYPVI (Binder et al., 2020).

The two studies that examined self-perception and self-esteem revealed that lower self-perception and self-esteem amongst CYPVI were identified due to significant social pressure, isolation, rejection, and restriction early on in their life (Augestad, 2017; Elsman et al., 2021; Oliveira et al., 2018; Sacks 2006). Supporting our argument that environmental and social factors are significant for shaping CYPVI's wellbeing but also being in line with previous reviews (Augestad, 2017; Datta, 2014) and research (Garaigordobil & Bernaras, 2009; Palenzuela-Luis et al., 2022; Papadopoulos et al., 2014; Reiter et al., 2012, Sebastian et al., 2008).

We reached three key conclusions when reviewing the QoL literature. First, emerging evidence suggests that SES and gender shape QoL outcomes in CYPVI (Li et al., 2023; Šemrov et al., 2023). For instance, having a lower SES and being a woman appears to be associated with greater QoL challenges. This finding suggests that the less financially privileged you are, the more likely to experience lower QoL, which has also been observed in neurotypicals (Kivits, Erpelding & Guillemin, 2013). Second, this time severity showed differing effects for QoL, with those with mild VI reporting better QoL than those with SVI or blindness (Bathelt et al., 2019; Elsman et al., 2018; Oliveira et al., 2018; Valconcha et al., 2020). While VI severity did not predict QoL, it determined its levels in a similar way to other factors such as chronic health conditions and age (Tadić et al., 2020; Upton et al., 2008). Social relationships reversed the effect (Elsman et al., 2021; Oliveira et al., 2018). This finding supports our argument that mental health and QoL are not outcomes of the ‘impairment’, and there are social determinants that shape QoL (Kivits et al., 2013). Finally, there were great child–parent discrepancies in the QoL reports; parents reported worse QoL for their CYPVI. This is an important finding as it challenges what we know from parent-reported studies on the wellbeing of CYPVI. While both child–parent reports have value, parent reports can offer insights into caregiving challenges and perceptions – they are not direct substitutes for the child's lived experience. Parents’ views are shaped by their own expectations, worries, and interpretations, which may not reflect the child's subjective reality. Therefore, clinical practitioners should be aware of this discordance, particularly in older children, where self-awareness and autonomy are more developed. Understanding the parent's viewpoint is useful in its own right, but it should not be relied upon to speak for the child's experience. Instead, child and parent reports should be viewed as complementary to each other rather than interchangeable sources of information (Tadić et al., 2016b). This reinforces the importance of actively seeking and prioritising CYPVI voices, especially in both research and practice contexts where they have historically been marginalised.

Reframing VI Research Through A Neurodiversity-Informed Lens

The limitations of a dominant deficit-based approach are evident in our review – framing CYPVI's mental health struggles as intrinsic to their ‘impairment’ rather than considering societal and environmental barriers that contribute to these challenges (Šemrov et al., 2023; Vlasova et al., 2019). Instead of offering specific recommendations, we identify key areas for research improvement and future directions.

To advance a more inclusive and contextually grounded understanding of mental health and QoL in CYPVI, greater attention must be given to coproduction in research. Current methodologies often neglect the voices of CYPVI and their families, resulting in research agendas and outcome measures that may not reflect their lived realities or priorities (Pilson, 2019). Participatory and codesign approaches, which position CYPVI and their families as active collaborators in shaping research questions, methods, and interpretations, are essential for addressing this gap (Clifton et al., 2020). These approaches not only enhance the relevance and validity of research but also align with the neurodiversity paradigm's emphasis on valuing lived experience and challenging top-down, deficit-oriented frameworks. By embedding principles of coproduction, researchers can more effectively capture the complexity of CYPVI's wellbeing, recognising the dynamic interplay of individual, social, and environmental factors. Furthermore, involving participants in the research process can empower communities, foster trust, and ensure that future interventions and policies are both inclusive and meaningful (Mimmo et al., 2021). Whilst we see a small engagement from the VI research community with participatory methods (Anderson et al., 2020; Bathelt et al., 2019; Magdalene et al., 2021), a stronger engagement is needed to understand better the lived experiences of CYPVI and research priorities that emerge from the community.

Greater methodological refinement is needed, including the systematic collection of demographic data; use of validated, accessible tools for assessing mental health and QoL in CYPVI; and development of consensus around which mental health conditions warrant focused investigation. Research must move beyond descriptive findings to examine how intersecting factors such as age, gender, socioeconomic status, and co-occurring neurodivergences (e.g., autism, deafness) moderate or mediate mental health outcomes. Notably, autism is frequently under- or late diagnosed in CYPVI (Do et al., 2017; Fazzi et al., 2019; Jure et al., 2016, Molinaro et al., 2020; Mukaddes et al., 2007). This can significantly affect access to appropriate support, resulting in masking unmet educational, social, and emotional needs. It also reduces the likelihood of tailored accommodations being put in place, which can compound difficulties related to both autism and VI, placing additional strain on families, children and service providers

Furthermore, researchers should prioritise child-reported outcomes and develop inclusive approaches to support independent self-reporting, reducing reliance on parental proxy. This shift requires recognition of the diverse and individualised needs of CYPVI, including how they shape identity and wellbeing. While involving stakeholders such as parents and educators is essential for promoting inclusion (Pavlopoulou et al., 2022), potential biases – such as parental perceptions shaped by deficit-based ‘tragedy narratives’ (Howe, 2006) – must be critically examined to ensure authentic representation of children's experiences.

Finally, global economic challenges, the COVID-19 pandemic, and increased awareness of inclusive research practices, understanding how these broader factors shape CYPVI's mental health remains a pressing concern (Castle et al., 2024). We urge researchers to take in mind these considerations when designing new research with CYPVI, rather than for – aligning with an open, transparent and participatory and neurodiversity-informed approach similar to research in other neurodivergent populations (Sonuga-Barke et al., 2024).

Limitations of the Current Systematic Review

The following limitations should be considered when interpreting the findings of this review. Firstly, heterogeneous sample sizes in terms of age and VI classification as well as clinical characteristics limited our ability to synthesise results comprehensively. Secondly, most studies used standardised assessments that facilitated cross-study comparison, these measures were predominantly developed in English-speaking countries and our review included global perspectives. The challenge in the cross-cultural validation of translated questionnaires in non-English-speaking countries. Given that our review included studies from diverse global contexts, the challenges associated with the cross-cultural validation of translated assessments must be acknowledged. Next, our decision to exclude qualitative studies with fewer than 10 participants may have limited the depth and diversity of qualitative insights included in the review, potentially overlooking valuable perspectives from smaller, in-depth studies. Finally, limitations also extend to searches only conducted in English and inconsistencies in the reporting of demographic variables, including gender and SES, and other contextual factors. The absence of standardised demographic reporting limits the ability to examine how these variables moderate or mediate mental health and QoL outcomes in CYPVI. Furthermore, there remains a pressing need for the development of population-, age-, and VI-specific assessment tools, such as Braille versions of standardised questionnaires, to ensure accessibility and validity across different groups.

Conclusions

Our review highlights poor mental health trends amongst CYPVI, and less nuanced QoL patterns due to the child–parent report disagreements. Our research provides evidence on the impact of contextual factors (e.g., age, gender, SES and social support) on mental health and QoL in CYPVI. However, the current evidence is limited. Future research should firstly better examine all VI cases and types of VI cause likely not all CYPVI will fall under the VI umbrella as well as involve CYPVI in research and practice about their lives. It is also essential to meaningfully unpack similar factors (i.e., onset of VI and the impact of diagnosis on mental health) and explore how contextual factors (i.e., SES; school relationships with peers and teachers; access to services) may influence and help explain the diverse mental health exepriences of CYPVI, recognising their individuality and resilience.

Supplemental Material

sj-docx-1-ndy-10.1177_27546330251346835 - Supplemental material for Mental Health and Quality of Life in Children and Young People with Vision Impairment: A Systematic Review

Supplemental material, sj-docx-1-ndy-10.1177_27546330251346835 for Mental Health and Quality of Life in Children and Young People with Vision Impairment: A Systematic Review by Yiyuan Cheng, Siqi Wang, Georgia Pavlopoulou, Jessica Hayton and Vassilis Sideropoulos in Neurodiversity

Footnotes

ORCID iD

Georgia Pavlopoulou

Jessica Hayton

Vassilis Sideropoulos

Funding

The authors received no financial support for the research, authorship, and/or publication of this article.

Declaration of Conflicting Interests

The authors declared no conflicts of interest with respect to the research, authorship, and/or publication of this article.

Supplemental Material

Supplemental material for this article is available online.

Notes

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