Introduction

Childhood is a transient period of life course, characterized predominantly by periods of growth and change, be it at the level of sexual maturity, specialized neurons in the brain, developmental capacity or emotional understanding. The subjective experience of some elements of growth or change during childhood is well-documented. For example, adolescence, the pinnacle of childhood, has traditionally been viewed as a period of stress and storm [1], with changing hormones triggering negative emotions, unpredictable behaviour and mood swings [2, 3]. Recent, advanced neuroimaging techniques have shed light into these behavioural and psychological upheavals, demonstrating the role of functional changes in the brain [4]. It is generally agreed that adolescence constitutes a vulnerable period in which morbidity and susceptibility to mental health conditions, such as anxiety and depression can increase [5].

When a child is living with a disability, the subjective experience of childhood and adolescence is likely to be qualitatively different from that of a child living without a disability. In addition to navigating normative, age-specific changes and challenges, children and young people living with disability will experience far-reaching, complex and dynamic issues associated specifically with their condition.

Currently, in the UK, 2 in every 1000 children and young people are estimated to be visually impaired or blind. Most will have been born with visual impairment or develop this in early life and have therefore grown up without normal vision [6, 7]. Existing qualitative studies have described the profound impact of VI during childhood and adolescence, showing that children and young people living with VI experience challenges participating in age-appropriate activities, such as reading, watching live sports or concerts, or playing outdoor games, and are subsequently unable to pursue the activities they enjoy the most [8, 9]. A robust evidence base documents the impact of VI on aspects of cognitive [10, 11], social [12, 13], and sensorimotor [14] development, demonstrating developmental delay among those diagnosed with VI early during childhood [15].

There is some literature which has focused specifically on psychological well-being among individuals who have grown up with VI, however conclusions about the impact of VI during childhood and adolescence are mixed. For example, remarkable similarities between visually impaired individuals and their sighted peers in psychosocial well-being, incidence of depression, and aspects of self-concept are documented [16–20]. Alternatively, adolescents living with VI have been shown to have smaller social networks [16, 21, 22], and score higher in assessments of obsession-compulsion, hostility, and paranoid ideation than their sighted counterparts [23].

Existing studies exploring the impact of VI on aspects of psychological and emotional well-being during childhood and adolescence largely rely on data collected using self-report measures, which are administered at one time point [24, 25]. These tools afford an optimal, quantitative approach for comparing different groups, but offer limited insight into the lived experience of being visually impaired, and of how young visually impaired people make sense of their experience of growing up with VI. Qualitative research studies are scarce and, where they do exist, have explored children and young people’s current experiences, primarily in relation to restricted daily activities [8].

As part of our broader research programme on quality of life of visually impaired children and young people [26, 27], we interviewed young people living with VI about their daily lives with an aim to understand more about their experiences living with VI. In conducting in-depth, semi-structured interviews with young people, we took the opportunity to capture, and present in this paper, young people’s retrospective experience of growing up with VI. Specifically, we explored the research questions: “How do young people describe their experience of growing up with VI?” and “What are the most important issues related to growing up with VI?”

Materials and methods

Results

Table 1 shows participants’ demographic and clinical characteristics, illustrating a wide range of characteristics with respect to the overall UK population of children and young people with VI (given the exclusion of participants with any other significant impairment) [6]. A total of 17 young people took part (40.48% participation rate).

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Table 1. Demographic and clinical characteristics of participants.

https://doi.org/10.1371/journal.pone.0254009.t001

Duration of in-depth interviews ranged from 40–139 minutes (Median = 88 minutes, IQR = 39). Sixteen interviews were conducted at participants’ family homes. One was conducted at the primary recruitment site. One or more parents/caregivers were present for part, or all of 4 interviews.

Overview of themes

Four basic themes emerged directly from the data, representing young people’s descriptions of everyday activities and attitudes, preferences and perceptions in relation to i) social relationships, ii) independence and responsibilities, iii) the future, and iv) rising to challenges. The issues discussed within these themes are best described using an overarching higher-order theme labelled as becoming me, describing a process in which participants developed a sense of self during childhood and adolescence, in the context of normative aspects of everyday life, as well as vision-specific experiences. Participants described the process of becoming me during childhood and adolescence, with three distinct stages: i) laying the foundations, ii) testing the waters and, iii) this is me. As shown in Fig 1, the 4 basic themes cumulatively mapped onto these stages (i.e. the final stage incorporating elements of all 4 basic themes). Variation emerged in the experiences of those with varying manifestations of VI (i.e. in relation to the timing of onset of VI, severity of VI, and rate of deterioration of vision).

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Fig 1. Thematic map.

Shaded boxes denote higher-order themes (higher level of abstraction than the original emergent themes). White boxes present themes.

https://doi.org/10.1371/journal.pone.0254009.g001

Discussion

Our study of young people’s retrospectively collected experience of growing up shows the profound impact of VI, with variations by the characteristics of VI on many aspects of everyday life. We present and describe a snapshot of the potential process whereby a child/young person living with VI (i.e. a childhood-onset, chronic health condition), comes to accept themselves as having a disability, and how this disability will shape their future. Three sequential stages of development emerged from the data as illustrative of children and young people’s experience of normative, age-specific issues, and vision-specific challenges. Just like their sighted counterparts, young people with VI experience dynamic changes and challenges during childhood and adolescence, in the nature of their social relationships; developing independence; and thoughts about the future. These normative aspects of growing up, however, were amplified by the experience of VI and a diverse range of additional, vision-specific, challenges. In this study, aspects of everyday life contributed cumulatively to participants’ developing sense of self, contributing in different ways and at different stages. The themes we developed focused on identity and becoming me emerged directly from the data, and best illustrate the process that young people described as important to their experiences of growing-up with VI. It is possible therefore, that beyond this stage, this process is not fixed (i.e. the foundations of identity development may continue to shift during adolescence and into adulthood). Thus, future application of this specific process will require extensive further validation.

Overall, our findings are in keeping with the extant literature in developmental psychology and resonate with some key theories of psychosocial development. For example, Erikson proposed that personality develops in a predetermined order through eight stages of psychosocial development, spanning infancy to adulthood, each involving a psychosocial crisis. According to Erikson, the 5^th stage (spanning 12–18 years) is characterized by an individual’s exploration of their sense of self and identity. The frequency and nature in which participants spontaneously emphasized the shaping of their sense of self over time, may be explained using some elements of Erikson’s description of an identity crisis. An identity crisis is thought to be “precipitated both by the individuals’ readiness and by society’s pressure” [34] (p.180), and to take place when 4 conditions have been met: a certain level of cognitive development must have been attained [35, 36]; puberty has to have occurred; a certain amount of physical growth must have been recently achieved; and cultural pressures have to be pushing the individual towards an identity re-synthesis [37]. In this study, elements of the identity crisis were most prominent in the final stage within which young visually impaired people began thinking about the future, and were faced with assimilating pressures from society (e.g. to follow a particular career path or start a family) with the restrictions imposed by VI.

Traditionally, young people are thought to resolve the identity crisis through establishing a realistic appraisal of the self, blended out of past, present and future [34, 35, 38]. Ideologies and beliefs which are congruent with the developing sense of self are retained, and those which are incongruent are discarded. Recently published literature, however, suggests that identity development may not follow the same pattern when young people are faced with disability or illness, particularly when onset is late and symptoms fluctuate [39]. Participants in the current study with late onset VI and/or progressively deteriorating vision, similar to those living with late-onset Crohn’s disease and Juvenile Idiopathic Arthritis [39], discussed acceptance of their condition, and efforts to adapt and explore alternative options, as important components of their search for an identity. Thus, it is possible that late-onset disability and/or fluctuating symptoms influence not only the outcome of the identity crisis, but also the process in which young people integrate their experience into a meaningful representation.

Young people with VI are traditionally thought to be at increased risk of social isolation [40]. However, there are mixed conclusions about the similarities of social support and networks among young people with and without VI. For example, young people with VI have reported lower levels of perceived support from peers than their sighted counterparts [41], while no between-group differences have been reported elsewhere [25, 42]. Dutch young people living with VI have reported lower levels of perceived parental support than their sighted peers [42], whereas a Finnish study found no differences in levels of parental support [25]. Exploring the relationship between source of social support and self-esteem, relationships with friends, but not with parents, were protective of low self-esteem [25]. Just like sighted adolescents, young people in the current study described a trajectory in which their social relationships transitioned during childhood, from family-centred, to peers, and eventually towards romantic partners [43, 44]. The nature of functional reward sought from social relationships meant that strong relationships, once established, were considered particularly valuable [45]. Only through the permits of these relationships, participants were able to explore and commit to personal values and ideologies [46], facilitating their developing sense of self. The role of social support from adults, such as parents and teachers, as discussed in the current study, seemingly transitioned in the later stages of adolescence, as young people began to consider their future. These relationships which had been established, and strengthened on the premise of functional support, later became instrumental for orientations towards the future.

The prevalence of mental health conditions among young people in the UK has been recently termed a ‘silent catastrophe’, with the number of adolescents reporting such conditions rising at a rate of fivefold in the last 10 years [47], and thought to peak at the age of 17–19 years [48]. Some literature suggests that adolescents with chronic physical health conditions may be more likely to develop psychiatric and behavioural disorders [49], and be depressed or have low self-esteem [50] than those without a disability. Among young adults living with chronic illness, a strong sense of identity has been associated with less depressive symptoms and better coping strategies [51]. These statistics, combined with the findings from the current study, indicate that the need for clinical monitoring of subjective well-being among adolescents living with chronic conditions such as VI, is critical, particularly since fluctuating clinical characteristics can impact the foundations of identity and sense of self. Participants with late-onset and/or progressively deteriorating VI in the current study were unique in their discussion of profound emotional and cognitive efforts to adapt to and accept VI, and thus might potentially be most vulnerable to the negative psychological impact of VI on developing identity. Future research, however, with larger sample sizes is needed before conclusions can be made about how best to support individuals with varying clinical characteristics.

In light of the ‘silent catastrophe’, emotional and psychological well-being for patients with long-term conditions has been prioritised in the NHS’s Five Year Forward View [52], generating a discussion about integrating physical and mental health services [53, 54]. Indeed, addressing the psychological needs of adults living with diabetes has been shown to improve physical health, support relationships between patients and health professionals [55], and there is scope for NHS savings [56]. The NHS Mental Health Implementation Plan proposes specifically, integration of services to support the needs of children and young people with physical health problems, and an ambitious and comprehensive ‘offer’ is expected to transform services by 2023/24 [57]. Whilst this ‘offer’ will take time and resources to develop and refine, it does not stop health professionals who are working closely with young people living with VI from engaging with patients’ subjective experience of VI. This can be done, for example, using robust and developmentally appropriate patient-reported outcome measures of vision-related quality of life [26], which may be particularly valuable when monitoring well-being over time with young people who, as shown in this study, are most at risk of negative psychosocial consequences of VI. The feasibility of combining the specialist skills of psychologists, and others involved in promoting psychological well-being among young people with VI, and clinicians who seek to assess, and support physical functioning, however, is an important focus for future research.

There are many, well-documented challenges associated with conducting interviews with children and young people [58]. For example, young people may strive to conform to their perceptions about the expectations of researchers [59]. For this reason, we carefully planned the interview procedure, and used ice-breaker activities, open-ended questions, and age-appropriate language with fostered a secure environment in which participants felt comfortable and confident to self-report. The rich qualitative data we present, and remarkable transparency and sincerity on behalf of participants, reflects these efforts. We also achieved a robust sample size which contained participants with a range of demographic and clinical characteristics. It is possible, however, that we have captured the attitudes and experiences of young people who are coping particularly well with VI, and are thus, more willing to discuss their experience that those experiencing greater psychological, emotional or functional distress. Although we collected robust data from participants with a range of clinical characteristics, the spread of participants with certain characteristics, such as late-onset VI was skewed, and conclusions regarding variation between participants with different clinical characteristics must be interpreted with caution until further research can be done. Additionally, this study is the result of secondary data analysis with the primary purpose to develop a collection of instruments [26, 27]. Data collected with the primary aim to explore the retrospective experience of growing up with VI may provide more detail.

To conclude, we present a snapshot of the self-reported descriptions of growing up with VI, from the perspectives of young people on the brink of adulthood, which illustrate the potential sensitive nature in which a chronic condition, with fluctuating progression and severity, can influence normative aspects of growing up. Using qualitative methods, we captured young visually impaired people’s perceptions of specific changes in their psychosocial development, adding to the growing body of quantitative literature which highlights the far-reaching impact of VI on psychosocial well-being during childhood and adolescence. The findings we report add granularity to existing research studies focused on identity and self-concept among children living with VI as, when given the opportunity, young people spontaneously described the process whereby children come to accept VI as part of their identity. These findings support the value of developing integrated physical and mental health services for this population and highlight the need for long-term monitoring of well-being and mental health in a population who may be particularly vulnerable to challenges and changes in developing a sense of identity.

Supporting information

Acknowledgments

We acknowledge the contribution of the members of the Child Vision PROMs group (Ameenat Lola Solebo, Phillippa Cumberland, Naomi Dale, Peng Tee Khaw, Gillian Lewando Hundt, Alki Liasis, Anthony Moore and Alison Salt) and the study advisory group (Corie Brown, Jackie Osborne, Paula Thomas, and Jude Thompson).