Adolescents with physical disability: seeing the individual in context
- Correspondence to Dr Catherine Tuffrey, Child Health Services, Unit A4, Alpha Court, Segensworth Business Centre, Fareham, Hampshire PO15 5RQ, UK;
- Received 14 November 2012
- Revised 17 February 2013
- Accepted 20 February 2013
- Published Online First 12 March 2013
Adolescence is a time of profound developmental change—socially, cognitively and psychologically. Although we know that many young people with a variety of long-term conditions negotiate adolescence with no more difficulty than other young people, those with physical disabilities can face barriers to their development in a number of areas. While many of these may not affect their physical health directly, it is important for health professionals to take a holistic view and remember that, as with other areas of child development, opportunities lost at critical periods may have later consequences. We need to anticipate potential difficulties early and discuss them with young people, parents and other professionals if we are to best improve outcomes for this group of patients.
Adolescent development is as important as that in early childhood, but until relatively recently has been neglected in medical teaching. This may be one of the reasons why many doctors lack confidence in recognising and responding to the needs of adolescents.1 ,2 Most young people with long-term conditions and disability negotiate adolescence with no more difficulties than their non-disabled peers.3 However, some do encounter barriers to their participation in areas of life which impact on their development and as a result, on adult functioning. This article aims to illustrate how physical disability may impact on adolescent development and what healthcare professionals can do to help facilitate normal development. There are a huge number of individual conditions which cause physical disability. They may be congenital or acquired, and due to neurological, rheumatological or skeletal impairments. Some of the issues discussed are common to all groups, while others will be more relevant to some conditions than others. The scope of this article does not include intellectual or sensory impairments, which will clearly present different and additional challenges for young people and which may coexist with physical disability.
A summary of suggestions for how health professionals may positively influence young people's development are shown in box 1.
Suggestions for how health professionals can help young people with physical disabilities negotiate adolescence
Discuss parents’ aspirations and expectations of adulthood early and help ensure these are appropriate
Ask young people about their social participation including part-time work, leisure activities and peer relationships and help them identify facilitators and barriers
Remind carers and school staff of the need for young people to have sufficient time alone when they choose, as well as time with friends without adults present
Encourage young people to identify their own strengths, skills and developing autonomy in managing their health and well-being
Model respect and kindness to young people, encouraging the same in trainees and colleagues
Implications from neuroscience research
The American psychologist Steinberg commented recently “that the brain changes characteristic of adolescence are among the most dramatic and important to occur during the human life-span”.4 One important finding of recent neurosciences research is a demonstration of the significant plasticity of the brain in early adolescence.5 This has been suggested as a reason for the increased vulnerability of adolescents to various forms of psychopathology as well as to stress.4 It has also been shown in both animal and human studies, that structural development such as myelination is affected by experience.6 It is likely then, that interaction between changes in brain structure and functioning and the individual's experience are of crucial importance at this time.4 Reduced opportunities for normal adolescent participation could have an effect not just on short-term psychological functioning, but on structural brain development, which may not be reversible. This makes the reduced opportunities for some disabled young people all the more important to address.
Models of adolescent development
A number of psychosocial theories of adolescence were developed during the 20th century. One model which may be useful when thinking about adolescent development is that proposed initially by the American psychologist John Hill7 and then modified by Steinberg and described in his book ‘Adolescence’.8 This is presented diagrammatically in figure 1.
This model describes three fundamental changes characteristic of adolescence, four contexts in which adolescents live their life and five areas of psychosocial development. These are not all unique to adolescence but are of particular importance at this time. This model is useful when thinking holistically about a young person in the clinic, and predicting where problems might occur. Areas which may present particular challenges to those with disabilities are discussed in more detail below.
The timing of puberty may be affected for some young people by treatment for their underlying condition. Cerebral insults predispose to early or late puberty and some rheumatological conditions may cause delay.9 Empirical research has also demonstrated that for boys, delayed puberty can cause problems with self-esteem and social success, while for girls, early puberty can be problematic, with evidence for an increase in mental health problems and reduced popularity with other girls.10 Research now shows that some brain maturational changes are linked to pubertal stage, including some elements of social emotional development,11 which may explain some of these findings.
Impairments in hand function can make some practical aspects of pubertal development challenging, for example, girls managing tampons and other sanitary protection. Foreseeing such difficulties and helping the girl develop strategies in advance, for example, with the help of an occupational therapist, can be helpful.
Transition to adult roles
Studies of young adults with disabilities have shown that fewer will have made all the transitions to adult life compared to non-disabled peers. Studies in Europe and North America have shown lower rates compared to the non-disabled population of adult roles such as independent living, employment and marriage in groups of young adults with conditions including cerebral palsy (CP),12 paediatric-onset spinal injury13 and juvenile idiopathic arthritis. In the latter group, despite similar educational attainment to controls, unemployment rates were found to be three times higher.14 The current high rate of youth unemployment and the high cost of housing in the UK and elsewhere is likely to exacerbate many of these difficulties. Transition to adult roles may be even more challenging for those with degenerative disorders such as Duchenne muscular dystrophy where life expectancy is significantly shortened and few have the opportunity for sexual relationships or employment.15
A study of young disabled adults16 suggested that parents perceived to be ‘over-protective’, or those with low expectations of their disabled children, may be a barrier to them achieving independent living and employment. On the other hand, parents (and professionals such as school staff) who had high expectations and insisted on young people learning self-care and other tasks, were identified as important facilitators. Health professionals have a role in encouraging parents and other professionals to have appropriate expectations and aspirations for these children from an early age. It is also important that more research is carried out to determine which experiences in adolescence are most important in maximising the chances of young people acquiring adult roles, and that knowledge is then shared with young people, families and other professionals.
A full discussion of the challenges of healthcare transition is beyond the scope of this article and has been discussed extensively elsewhere. As with all young people who will require transition to adult services, planning should be undertaken early. There may be particular difficulties for young people with physical disability where there may be no secondary care adult service to move them to. In this case, it is important that young people, their families and general practitioners are aware of potential future health problems and how to access help if and when they occur.
Peer group and family
A strong social network of peers has been shown to improve resilience for young people with disabilities.17 Disabled young people attending special schools may travel some distance to school, so friends may not live locally, which makes socialising outside school more difficult. Other barriers to informal socialising include access and transport. As young people get older, it becomes less acceptable to them and their peers for parents to accompany them. If a group of friends all use equipment such as wheelchairs, meeting in public places such as restaurants or the cinema may need advanced organisation, mitigating against the informal and spontaneous leisure time enjoyed by others of the same age.
An Australian study of adolescents aged 11–17 years with CP18 examined social participation compared to a non-disabled sample. They found that young people with CP reported a lower level of physical activity, with participation reported more commonly by those with CP including playing with animals and with younger children, using playground equipment and swimming, all activities less likely to include opportunities for social activities with peers. A study of boys with Duchenne muscular dystrophy aged 5–15 years showed that social participation (eg, visiting friends, going to parties or the cinema) became less frequent with age in contrast to unaffected boys where no such change occurred.19 The cause for these observed patterns may be multifactorial, but clinicians should be asking young people about their social lives and whether they need help in overcoming barriers.
The disabled young people in one study20 identified the attitudes of non-disabled peers as one barrier to social participation, as some treated them as though they were younger or less intelligent. They also identified their own worries about acceptance as a barrier. This latter observation is not a surprise, given the increased self-awareness and concern about others’ perception of oneself, which is a developmental feature of adolescence. Given the findings that younger children with CP have fewer friends and are more likely to be victimised,21 ,22 perceptions for some may also be based on prior experience.
As adolescents have a developmental need to communicate with a wide selection of people outside the family, online communication is potentially highly beneficial.23 Qualitative research with disabled adults has described how online communication enabled interactions with others which would otherwise not have been possible because of opportunity or distance.24 In some cases relationships were only online, but in others this was associated with later face-to-face communication. Many young people may have similar experiences to these adults, as suggested by one participant in a qualitative study of young men with Duchenne whose romantic relationship was enabled by the internet.15
Many young people in the UK take part-time jobs while still in education. Part-time employment may have positive effects on responsibility, increased independence from parents and punctuality.25 Even if the work itself is not particularly stimulating or valuable in terms of skills learnt, it may give young people confidence that they are capable of holding down a job, and may also give future employers that same confidence.3 ,26 ,27 Decision-making about career choices and future work have also been shown to be influenced by experiences of work in adolescence.28
A study26 in the USA comparing the work experiences of a small sample of adolescents aged 13–19 years with spinal cord injuries and friend or sibling controls, found non-significant differences in participation in chores or voluntary work, but significantly fewer disabled young people had experience of paid employment. They suggest that reduced expectations from parents and resistance from employers both play a part and point out that those with more severe impairments may have less spare time available to take on paid work because of the demands of their condition. Work in the North of England with young people with CP aged 13–21 years found that significantly fewer (p<0.005) had an informal part-time job or formal paid work compared to a general population sample aged 13–17 years (unpublished data, C Tuffrey, 2011). As this lack of employment experience may be one reason for lower rates of employment in young adulthood,29 healthcare professionals should encourage young people to look for opportunities to improve their experience of work, both paid and unpaid.
Many disabled young people find sporting activities an important part of their leisure time. However, clubs for disabled sport may be some distance from young people's homes, and some families (and mainstream schools) may not realise what is available locally. Playing disability sport not only provides the same advantages of physical fitness, teamworking and positive socialisation that sport provides for able-bodied adolescents, but it can also be very important in providing positive disabled role models for the young people as well as a sense of achievement.
The use of new technologies is an important area of adolescent participation in the developed world. A study from the Netherlands30 examined the frequency and nature of internet use and degree of adult guidance for 97 physically disabled adolescents aged 13–18 years with normal IQ compared to a comparison group. While no differences were seen in access to the internet, fewer disabled adolescents used the internet for obtaining information or for downloading films. Why this is the case is not clear, but it may be that the difference in downloading of information reflects differences in educational expectations. This study also found that those with disabilities were more likely to be warned about the risks of the internet and had more rules imposed on them at home. This may be a barrier to participation, but could be appropriately protective.
Identity development is a key part of adolescence. It is a dynamic process which develops through adolescence, influenced by many different experiences and interactions. Young disabled people may identify with disabled or non-disabled role models, and this may change over time. The disability rights movement has enabled many to see a ‘disability identity’ positively. However, conflict may occur because disability identity cuts across the age range, whereas youth identity is age specific.31 Reconciling the two may be problematic. Changing health status in adolescence, which may occur with some conditions, adds to the challenges of identity development.32
The peer group is key to identity development.33 Interactions with peers enable adolescents to compare themselves with others, try out alternative identities and gain feedback on themselves and their identity. There are many practical reasons why disabled young people may have reduced opportunities for informal socialisation with peers as discussed above. Those with disabilities may also be less able to choose clothes, hairstyles and music as well as risk-taking behaviour which contribute to identity experimentation because of their greater reliance on parents and carers for transport and personal support. How this affects adult functioning has not been studied, but there is evidence, for example, that a certain amount of risk-taking behaviour is associated with better psychological outcome than none (or indeed too much).34 While one study into risk-taking behaviours found an increased frequency of smoking, alcohol and drug misuse, unsafe sex and non-use of seatbelts in adolescents with long-term conditions (mostly respiratory and sensory impairments) compared to non-impaired controls,35 work looking specifically at groups with physical disability found a lower rate of drug, tobacco and alcohol consumption but higher rates of unhealthy eating and lack of physical exercise.36 ,37
Although peer contact is important for adolescents, solitude is also important. Aloneness has been found to be viewed most positively in older adolescents, has been associated with positive psychological well-being and may be important in facilitating identity development and in the process of individuation.38 A young person with disabilities may have less time alone if they need significant personal assistance. Whether this has a detrimental effect is not known.
Parents may benefit from an explanation of this normal part of development when trying to understand and facilitate their young person's changing leisure preferences or friendship groups.
It has been suggested that the development of autonomy in adolescence is of similar importance and significance as the development of attachment in infancy. It is important to make the distinction between decisional autonomy and physical independence.39 Although some individuals will never be able to undertake some tasks without assistance, they may be able to make autonomous decisions, for example, about how and by whom they wish their personal care to be provided. This may be hard for adolescents where parents are providing care. Several studies with young people with spina bifida have shown a slower rate of increase in decisional and behavioural autonomy with age compared to comparison groups.40 ,41 Some of this difference is accounted for by lower cognitive ability, but not all.
Autonomy may also depend on the availability of appropriate aids and supports. One study42 looked at the support needs of 477 young people aged 16–24 years with motor disabilities in Sweden for a range of tasks. In 16–62% of cases, appropriate aids were unavailable. Of those who needed the assistance of another person, only 26% had chosen the person themselves. With the current financial situation, the provision of appropriate equipment and personnel may be threatened and health professionals must persuade funders of the importance to adolescents of autonomy.
Health professionals also have an important role in prompting parents and carers to consider how young people's autonomy can be encouraged, including autonomy in managing their own health. Many families do not consider helping young people to learn to undertake tasks such as ordering repeat prescriptions or medical supplies, making appointments, etc, unless prompted to do so. Starting to do these tasks in mid-adolescence when they can be fully supported should be encouraged. The use of measures such as the Rotterdam Transition Checklist12 can be a useful starting point for discussion of such issues. This is an instrument designed for young people with CP but appropriate for other groups. It covers a number of domains such as romantic relationships, employment and health transitions. Seeing adolescents without parents during clinic appointments can assist by demonstrating professionals’ expectations of evolving autonomy to young people and their parents. It is important to stress, however, that parents need to continue to support their young person while autonomy is developing. Studies with young people with conditions such as diabetes suggest that increased parental monitoring is associated with improved treatment adherence.43
Intimacy and sexuality
During adolescence, patterns of friendship change and develop. In early adolescence, same-sex friendships and peer groups are common. Close relationships may develop with members of the same sex, and young people may identify with fewer ‘best friends’. Intimacy in these relationships replaces the previous intimacy experienced with familial relationships and is an important precursor to close adult relationships. In mid and late adolescence, sexual relationships become commoner, in addition to non-sexual close friendships. These friendship experiments are possible because of the increasing amount of time adolescents spend with friends rather than family or other adults. They require the adolescents to be unsupervised by adults, with a degree of privacy. Adult assistants may unwittingly interfere with this.
Parents of disabled young people may have understandable concerns about allowing their children the freedoms normally experienced in adolescence because of worries about their safety.44 For example, parents may be concerned about allowing a young person who falls easily to use public transport without an adult. Young people who need their parents for assistance with toileting may find it difficult to socialise with peers alone. Both examples may lead to the young person being less able to develop intimate peer relationships.45
A Dutch study of young people with CP found that while 77% reported experience with a romantic relationship, only 23% were involved in such a relationship at the time of interview, which was significantly lower than the comparison group (61%, p<0.001).46 Going out with friends and dating were associated later with development of romantic and sexual relationships. Those who went out regularly with friends were four times more likely to have romantic relationships and sexual experience.
Parents may find it harder to appreciate that a disabled child is growing into a sexual adult than if they were non-disabled. A study of young people with spina bifida47 found that while 92% of young people reported having been romantically interested in someone, 58% of parents thought that this was the case for their adolescent. While 75% of young people said they expected to marry, and 71% to have children, 44% and 35% of parents had these expectations for their child.
This same study found that a high proportion of young people with spina bifida rated their knowledge about sexual health as poor. Practical and emotional concerns may affect disabled young people in contemplating and being involved in sex. Reduced manual functioning may make condom application difficult. Girls with adductor spasticity or limited or painful hip movements may be concerned about appropriate sexual positions. Fatigue is an issue for some.45 Masturbation may also be difficult. Concern about body image, for example, surgical scars or unusual limb morphology, may lead young people to be anxious about how sexual partners may respond to them.45
Some parents find it uncomfortable discussing sexual issues with their children whether disabled or not, and so where this is the case and the young person has a disability which has practical implications for masturbation or intercourse, parents may not be available to offer advice and support.44 Although schools offer sex education to all young people, most staff are unlikely to offer advice and information which is tailored to specific disabilities. Healthcare staff are best placed to provide information for young people, but this needs to be proactively offered, as young people may want to discuss such information but will not always raise the topic themselves.45
There are a number of areas in which health professionals can predict where a young person's disability may impact adversely on their development, although empirical evidence is often lacking of exactly how opportunities and experiences in adolescence, or lack of them, affect adult functioning. However, we do know that social participation is greatly reduced for adults with physical disability and it therefore behoves us to consider the developmental needs of the disabled young people we see and to educate families and other professionals to both consider and meet these needs.
This paper is dedicated to the memory of the late Dr Jenny Tyrrell, a great paediatrician and teacher, who first taught me to consider the unique needs of adolescent patients. I would like to thank Fiona Finlay and Kathy Padoa for their helpful comments on previous versions of this paper. I would also like to acknowledge the contributions in the past of Allan Colver and Belinda Bateman to discussions on this topic, in their roles as academic supervisors of my PhD project.
Funding Some elements of the literature search and ideas expressed in this article were developed while I was working on research funded by Northumbria Healthcare NHS Foundation Trust.
Competing interests None.
Provenance and peer review Commissioned; externally peer reviewed.