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CarE of a Child with down’s syndromE

Lisa Hughes and Pauline Cardwell describe a student’s experience of supporting parents during their son’s hospital stay

Child dEvElopmEnt is a vast and complex subject which considers the growth and maturation of the child and the possible influences on how this occurs (Berk 2008). the nature-nurture debate has endured for many years, with conflicting views being proposed on how a child has the capacity to reach adulthood (moules and ramsay 2008, Bee and Boyd 2010). the nativist perspective is that development is a predetermined pattern; the result of the individual’s biological inheritance (Berk 2008), whereas empiricists emphasise the importance of external stimuli in child development, such as a mother’s interaction with her baby (Glasper and richardson 2010). however, many experts favour a combination of innate biological components and lifelong external influences – for example, environment and social relationships – as playing a vital role (moules and ramsay 2008).

the focus of this article is the development of a child who was cared for in hospital during a clinical placement of the first author, and takes into consideration the physical and psychosocial elements that influenced his growth and maturation. for nurses caring for children and young people, professional knowledge of how children typically grow and develop is important. when a child’s

development does not proceed along the predicted ‘normal’ milestones, nurses need to understand the implications for everyone involved.

Characteristics people with down’s syndrome have 47 chromosomes in each cell because they have an extra copy of chromosome 21 (trisomy 21) (Burns and Gunn 1993). this additional chromosome and the genetic material it accommodates causes too many proteins to be produced in the cell, which disturbs the normal growth of the fetus (selikowitz 1997). this abnormal growth results in the cognitive and physical impairments seen in children who have down’s syndrome (hockenberry and wilson 2007). there is a wide variation in symptoms associated with the condition: some individuals achieve average competence and others have severe intellectual disability (Burns and Gunn 1993).

with one or two affected children being born every day in England on average, down’s syndrome is common and, because of the increased incidence in babies born to older mothers, the incidence is predicted to rise as more women are opting to delay starting families (Bailey 2009, Blakemore 2009).

Sean’s development sean (not his real name) is a 19-month-old boy with down’s syndrome, who lives with his mother and father and younger brother liam, aged seven months. physically, sean displays some of the classical features of the condition (mcCance and huether 2002), including microgenia (an abnormally small chin), macroglossia (an abnormally large protruding tongue), an epicanthic fold from the inner corner of the eye to the bridge of the nose

abstract The unique healthcare needs of children and their families living with Down’s syndrome are identified; nurses must understand these to be able to help fulfil the person’s full potential in life. The article also explores how working in partnership with the individual and family members can support optimal development.

Keywords Child development, children’s nursing, Down’s syndrome

Children with Down’s syndrome reach their developmental milestones at a later than average age (Posed by model)

Correspondence [email protected]

Date of acceptance September 2 2011

Peer review This article has been subject to double-blind review and has been checked using antiplagiarism software

Author guidelines www.learningdisabilitypractice.co.uk

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and eyes that slant slightly upwards (hockenberry and wilson 2007). people with the syndrome can also have congenital heart defects and deficits in hearing and vision (rCn 2011), and hypotonia, ligament laxity and short stature (mcCance and huether 2002).

sean can sit up unaided. this gross motor skill may be attained at between six and 30 months by a child with down’s syndrome, whereas the typically developing child sits independently at about six months (Bee and Boyd 2010). sean has begun mastering the ‘pincer grasp’ and can hold a cup and drink from it. his parents were relieved and happy when sean reached this milestone – achieved at six to eight months in typically developing children – because it requires strong posture control of the back and arm muscles and intricate grasp co-ordination (selikowitz 1997, Berk 2008).

it is difficult to determine exactly why children with down’s syndrome are slower to attain motor development. motor control problems and physiological and cognitive deficits as a result of impaired brain development may all be involved (Cleland et al 2010).

Learning through play sean’s parents expressed dismay when they could not stimulate and engage him in play. he did not seem willing to explore and interact with his environment and it was difficult to excite or motivate him. this is why, as the nursing student, the first author became involved in helping this family. her role was to liaise with the play therapist about the most appropriate and effective activities to use to stimulate sean. several options were explored, but we found a multisensory ‘house’, which offered various visual, auditory and textural stimulus, to be the most successful in motivating him and this proved to be the source of his enjoyment during his time in hospital.

other members of the multidisciplinary team who contributed to sean’s care were the physiotherapist and the occupational therapist. these health practitioners have attended sean since he was three months old to aid his mobility as he grows. during these visits, sean is assessed extensively as he takes part in play-orientated tasks and activities. this also includes massage therapy, which has been linked to improved muscle tone and motor development (hernandez-reif et al 2006).

the health professionals examine the child’s gross and fine motor abilities, posture, co-ordination and capacity to learn new skills (Burns and Gunn 1993). Currently, the therapies being used with

sean are focused on muscle and joint strengthening exercises in his abdomen and legs. this is to support his posture and balance as he learns to walk.

sean was admitted to hospital for a minor surgical procedure and it was during this brief stay that the first author worked alongside the physiotherapist to ensure continuity of care and offered support to his parents. the involvement of sean’s parents in this treatment also allowed them to learn the exercises so they would be able to practise them following his discharge from hospital. sean’s parents were aware of the importance of this in supporting the efforts of sean in gaining new skills, which is acknowledged as being a valuable part of an infant’s movement repertoire (Burns and Gunn 1993).

his mother uses play and games to stimulate and develop new skills with her son. play is an important aspect of development, because it helps to consolidate skills learnt (Glasper et al 2010). it also stimulates the child to explore, aids powers of concentration and increases the potential to learn new skills (rondal et al 1999).

although the ability to reach physical milestones lies in inherited functions, such as the neurological, muscle and skeletal systems, and the capacity to receive and interpret information, external influences or nurturing of these skills by physiotherapy, play and practice, help an individual to achieve his or her full potential. therefore, someone’s development depends not only on genetic factors but on external influences, such as the environment and social relationships (Burns and Gunn 1993). furthermore, physical impairments may affect psychosocial and other aspects of development.

Communication learning to speak is another complex task for the growing child. some developmental psychologists view the ability to communicate as innate. Glasper and richardson (2010) identified work by Chomsky which proposed that children are ‘pre-programmed’ – that competence for learning language is built in. similarly, nativist theorists hold that humans are equipped with a ‘language acquisition device’ that provides the capacity to construct vocabulary and sentences (Glasper and richardson 2010). this view is plausible as it states that linguistic input, such as listening, is not sufficient to explain how children learn language (Berk 2008).

Conversely, empiricists conclude that language development is a process of imitation and social experience (Bee and Boyd 2010). however, the intricacies of effective language acquisition are thought to arise from a combination of a nurturing

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social environment and inborn physiological and psychological mechanisms (moules and ramsay 2008).

the area in which individuals with down’s syndrome vary the most is language development (roberts et al 2008), where they lack the ability to meet the norms largely due to motor, intellectual and social delays (Cleland et al 2010, van duijn et al 2010). research has indicated that they have difficulties in storing phonological information and, compared with a typically developing child, show large differences in vocabulary size and ability to form sentences (Burns and Gunn 1993, Cleland et al 2010).

normally, a child of 19 months should be beginning to construct simple sentences known as telegraphic speech (Berk 2008). sean only managed to say a few words such as ‘baba’ and ‘dada’. it was difficult to ascertain what he felt or wanted at times, which was frustrating and sometimes distressing for him. sean’s mother used a trial- and-error approach to identify what he was trying to communicate and encouraged staff to do the same. this approach to sean’s care was at times successful but also frustrating for him and his mother because the author was not always accurate in her assessment of his needs.

Discussion it is important that nurses acknowledge that children with down’s syndrome may rely on non- verbal gestures to express themselves, rather than vocalisation (selikowitz 1997, Cleland et al 2010).

during sean’s time in hospital staff learned how to assess his behaviour in response to pain, hunger and distress. for example, when assessing his pain level, nurses observed his physiological status and behaviour by using the paediatric pain profile scale (rCn 2009), which is suitable for managing pain in children with severe learning disabilities when used in conjunction with parental input (Coyne et al 2010, rCn 2011).

Caring for sean’s family was a positive learning experience. sean and his mother had a strong, loving bond and his friendly personality helped the first author to build a therapeutic relationship with them during his stay. his parents appeared devoted to meeting his needs and celebrating his successes and individuality. it was an enriching encounter that demonstrated how the families of the children in hospital can be active partners in service delivery and the outcome.

an individual’s development depends on his or her physical inheritance and innate qualities, and on environmental input. it is important to appreciate that no two children follow the same path of development, and to ensure that the care offered is aimed at achieving optimal growth and maturation (Bee and Boyd 2010, rCn 2011). when supporting patients and their families, nurses are offered a privileged insight and input at what is often a distressing or vulnerable time in their lives. Understanding their needs and tailoring care to meet them can only improve these experiences for all involved.

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References

Conflict of interest None declared

At the time of writing this article, Lisa Hughes was a second-year child branch nursing student at Queen’s University Belfast

Pauline Cardwell is a teaching fellow (children’s nursing). Both at Queen’s University Belfast

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