Hilary Hart

Can constraint therapy be developmentally appropriate and child‐friendly?

the latter study older children achieved a better functional outcome than younger children. Measures to make this form of therapy child-friendly have been adopted in several studies. Naylor and Bower1 used gentle restraint with the therapist holding the hand together with verbal encouragement. In a study4 of children aged between 4 and 14, the two major elements of adult CIMT were retained (repetitive practice and shaping – approaching a motor behaviour in small steps) and the children wore a sling for 6 hours a day for 10 days. In each of these studies great emphasis was placed on making the therapy sessions fun with social interaction, interesting activities, encouragement, rhymes, and songs. Although many studies show at least short-term benefit from CIMT there is a dearth of level 1 trials. However, many questions need answering, for example, what is the lowest level of hand function which could improve with therapy? Unlike in other studies, Eliasson et al2 included children with very reduced function and intriguingly the more impaired children fared best. Active practice is the important treatment variable but how much does restraint matter? Although one study has shown that the use of restraint was associated with improved results compared with the same therapy without restraint (probably because of increased practice), the environment used to solicit intense practice is all important for change.5 ‘Perhaps the most important question for future work is whether similar intense practice can be elicited without the restraint and whether this might result in even better outcome.’5

Terminology to benefit children

Terminology means ‘a set of words used in a specially understood or defined sense’. From the standpoint of an international journal welcoming English language material from all over the world, it is apparent that widespread differences in meaning and uses of terminology exist in the field of developmental medicine. Differences in terminology matter, as Bax and Mac Keith1 commented, ‘First, foremost, surely, is how careful we must be in our language. If words are used... (that) confuse us they may in fact harm the patient’. There are three main areas where terminology has a powerful effect on the lives of children with disabilities. Firstly, when a label which is used to describe characteristics of a health condition is used in a derogatory way, the child may experience distress and an increased feeling of exclusion. Unfortunately, when diagnostic labels are attached to a condition associated with disadvantage, stigmatism readily occurs. This even happens when a term is beneficial to the individual as in the word ‘idiot’, which seems appalling now, but originally described prisoners with learning disabilities bestowing on them the advantage of being offered care rather than punishment. Likewise, ‘spastic’, the clinically useful term meaning hypertonic, has developed an alternative unpleasant usage. Language is a sensitive issue and poses delicate questions for authors and editors. For example, a frequent difficulty arises when a term such as ‘mental retardation’ enjoys common usage in some countries but is considered negative and inappropriate elsewhere. In the UK the alternative phrase ‘learning disability’ is favoured by paediatricians, children, parents and the Department of Health. However, the World Health Organization uses ‘mental retardation’ in its ICD-10 classification (WHO 1993)2. Many authors are therefore reluctant to relinquish a term which is widely used in international scientific language. This journal encourages the use of ‘learning disability’ together with a footnote explaining its equivalence in meaning to ‘mental retardation’. Secondly, confusion about certain terms may frustrate scientific research into childhood disability as criteria for defining study samples may lack consistency. For example, specific learning disorders in the UK (failure in an area of academic achievement such as reading or arithmetic) are termed ‘learning disabilities or disorders’ in North America – the very term used in the UK to denote generalized cognitive impairment. Such international difficulties are illustrated in a recent note from a paediatrician from the southern hemisphere concerning the use of ‘mental retardation’. She was happy for it to be replaced with ‘intellectual disability’ but not with ‘learning disability’ because she felt that it meant such things as dyslexia and did not include what people in her region refer to as ‘intellectual retardation’ Even the UK-preferred term ‘specific learning disorders’ has shortcomings. As Whitmore and Bax3 discuss, the term ‘learning’ implies acquisition of academic skills and traditionally excludes other ‘learned’ behaviours such as attention and moderation of activity level. Furthermore, ironically, the concept that disorders are ‘specific’ is at odds with the clinical picture of comorbidity. It is well recognized that children with one specific learning problem often have another; for example, dysgraphia as well as dyslexia. Whitmore and Bax suggest that an aetiological approach might be more helpful clinically, perhaps using the term ‘neurodevelopmental dysfunction’ which signals the role of the nervous system and of development in the evolution of the problems. Whatever terminology is chosen, authors should define their population. A third area in which terminology impinges on the welfare of children lies in the allocation of resources. In some circumstances, a health condition defined in a certain way confers specific entitlement to benefits and services. In North America, largely because of dislike of the term ‘mental retardation’, the Association for Retarded Citizens (Arc), a parent-based organization, is considering whether to change to an organization representing people with developmental disability. However, according to federal policy, individuals with mental retardation qualify for special education whereas those classified as having developmental disabilities may not. Clearly, decisions to alter terminology should not be taken lightly. Although terminology may be refined and rationalized, disablement will continue to exist – irrespective of labels. The problem is not only an issue of language but also, and mainly, an issue of the attitudes of other individuals, society, and health care professionals towards disablement. Disablement is in the eye of the beholder and takes no account of the person’s inner world or the concepts an individual may have of him/herself. Many persons who have a physical or psychological impairment and appear to be at grave disadvantage in performing everyday tasks do not regard themselves as disabled. What is needed to benefit children, in addition to a change of attitude, is courteous language together with correct content and usage.

Disabled children living away from home in foster care and residential settings.

The vast majority of disabled children in the UK are well-cared for within the family setting, but around 12 000 disabled children live away from home in foster families, residential homes, and residential schools. Around two-thirds of children are placed under a care order and about one third under a voluntary arrangement made with parents. In the UK disabled children are eight times more likely to be ‘in care’ than non-disabled children and that 28% of all children ‘in care’ are disabled. Although care in a home setting is the ideal, fewer disabled children than non-disabled children are found places in foster care as opposed to residential provision. In the USA most children cared for ‘out-of-home’ are in involuntary rather than voluntary care but placement is more likely to be in a homesetting. There are multiple reasons for a child needing care outside the family. The practical and emotional difficulties of caring for a severely disabled child challenge every family, more so in the presence of poverty and social isolation. Many parents guilt that they cannotkeeptheirchildathome.Periodsof short term‘respitecare’ may prevent the need for long-term care away from home but too fewfamiliesareoffered this lifeline. However, disability itself may not be the main reason for childrencoming into thecare system. About two-thirdsof children come into care because of physical or sexual abuse or neglect. Hames emphasizes that the causal pathways leading to abuse and neglect are confounded by the type of impairment and by the coexistence of many socio-familial risk factors. The link between abuse and severity of disability is unclear with some studies showing an increased risk with more severe disability and others showing a reduced risk. Recent reviews suggest that children with certain types of disability are at increased risk of abuse. Children with conduct disorders and learning disability* are at greatest risk. There is weak evidence to suggest that children with cerebral palsy may be at increased risk of physical abuse and neglect. Autism and sensorydisordersdonot seemtopredispose toabuse. The negative effects of abuse and neglect on long-term psychological and intellectual outcomes are becoming increasingly clear. Evidence from children who were institutionalized in Romania suggests thatearly institutionaldeprivationcanhaveresidualeffects on intellectual and emotional development at least until the age of 11 years. Emotional neglect, without subnutrition, is associated with markedly diminished head growth. It has also been shown that the intellectual and emotional effects of early deprivation can bemodulated to a remarkably largeextentby fosteringoradoption with the greatest gains seen in children adopted before the age of 6 months. Studies looking at the hypothalamus-pituitary-adrenal axis lend support to theories for possible mechanisms for environmental modulation of brain development. Findings suggest that positive attachments and sensitive parenting can protect the developingbrain fromthepotentialnegativeeffectsassociatedwith prolonged, stress-induced increasedcortisol levels. Loss of a secure parental attachment and family life is one of the devastating consequences of a child entering the care system and particularly worrying for the youngest children who may demonstrate disturbed attachment behaviour. Studies have shown that many children in residential placements have reduced parental contact and that substitute care may lack consistency with children insomeresidential schoolshavingnumerous carers. How can the needs of this especially vulnerable group of children be met? Children with communication impairments represent a unique challenge for those looking after them to find out what they want and to help them communicate their everyday needs and discomforts. Training in how to use different communication methods effectively can help staff achieve these goals. CALL (Communication Aids for Language and Learning http://www. callcentrescotland.org.uk) has developed the concept of a Personal Communication Passport containing a narrative of the child’s life and preferences tohelp thechild ‘tell theirownstory’. Attachment to a primary caregiver is central to innovative projects in the Netherlands which have explored careful matching of disabled children and foster parents, an approach being increasingly embraced in the UK. For children who are unlikely to be able to return home every effort should be made to gain permanence by adoption, although this may not be easy to achieve. One study found that 40% of children seeking permanence through adoption had some form of special need and 20% has significant impairments. However, some children with high support needs may be able to be cared for only in a residential setting. Therefore the challenge for these children lies in providing a secure and emotionally sensitive environment. As Cousins proposes ‘all those who come into contact with disabled children should ask the following two fundamental questions. Does this child have a sense of home and family? Who is monitoring this child’s long-term needs?’

‘Puppet’ children. A report on three cases (1965)

The association of mental retardation with abnormal physical development of congenital origin still includes a great variety of conditions whose causation is undetermined and which lack precise classification. The (three) children described here possess such similarities as to justify combining them into a specific group, as yet of unknown cause. Their flat heads, jerky movements, protruding tongues and bouts of laughter give them a superficial resemblance to puppets, an unscientific name but one which may provide for easy identification. It will be seen that all these children possess a number of characteristic features in common and may be summarised as follows:

Speech and language disorders and associated problems: meeting children's needs

accumulate at an early age and flags up an opportunity to identify precursors before the appearance of signs of the child having failed. The study by Sturm et al.4 finds that the majority of children with another neurodevelopmental disorder, high functioning autism, have associated problems of ADHD or DAMP and many have a major medical diagnosis such as epilepsy or sensory impairment. Interestingly, the earliest descriptions of autism reported co-existing neurological disorders, such as epilepsy, and more recent studies of children with the full range of autistic spectrum disorders have reported even higher epilepsy rates. The study by Sturm et al. highlights the need for children with autism to have a multiprofessional assessment. Clearly, children with more than one impairment, whether causally related or not, are additionally disadvantaged. A model for care needs to focus on the early detection of multiple impairments and provisional individually-tailored interventions. A further consideration is the possible increase in the number of such children with the increased survival of very preterm infants who may initially appear to have escaped brain insult but may later display subtle neurological, behavioural, or learning problems. Speech therapists, psychologists, physiotherapists, and occupational therapists are key members of the diagnostic and interventional team. Unfortunately, this is one area where even in many developed countries, including the UK, we may be failing these children. Long delays in arranging for a child with language problems to have a speech therapy assessment or for a child who is failing at school to receive help from an educational psychologist are frustratingly common. There is no doubt that increased numbers of these skilled professionals are required to meet the challenge of fulfilling the needs of this important group of children.

How we decide

Each year over three hundred papers are submitted for publication in this journal, of which less than half are accepted. Many good papers are received but only those of the highest standard are selected. The decision process leading to acceptance or rejection is involved and often difficult. It focuses on two principal considerations: the scientific quality of a paper and its appropriateness for the readership of the journal. Papers are sent out to two referees and to a statistical referee when indicated. Frequently, our referees are world authorities in their field, whose detailed appraisal of a paper together with their perspective on its value as a contribution to the literature, shape the outcome of the selection process. In around twothirds of cases the referees are in broad agreement, but in about one-third their opinions diverge. A further opinion may be sought but in the final stages it is the senior editor’s task to make a decision in the light of the referees’ comments and his own judgment (which may not agree with either referee). Very few papers are accepted without revision which probably reflects the meticulousness of the reviewers’ reports. Once accepted, papers undergo copy-editing that is more intensive than in many other journals. It is interesting to note the criticisms that most regularly feature in reviewers’ reports. A frequent concern is overenthusiastic interpretation of the significance of findings resulting in unjustifiable clinical recommendations. Conventionally, recommendations should correspond to the level of a study in the hierarchy of research designs with large randomized-controlled trials carrying the strongest weighting.1 Recently, this traditional view has been challenged by Concato et al.2 and Benson and Hartz3 who conclude that the results of well-designed observational studies do not overestimate the magnitude of treatment effects. However, developmental disability research presents particular difficulties in study design for reasons such as heterogeneity of clinical groups, problems in finding suitable controls, and the rarity of some of the conditions being investigated. Single subject design (where participants act as their own controls) is one approach often used and although such studies are not incorporated into Sackett’s method of grading research, they may afford the best available evidence. As Sackett comments, if more rigorous studies are not available we must follow the trail to the next best external evidence and work from there. However, reporting the conclusions of such studies merits a degree of circumspection.1 Referees are also vigilant in detecting sources of bias. Selection bias (where participants selected for study differ in some systematic way from those not selected) may occur, for example, when there is a high non-response rate, loss to followup, or a non-representative sampling frame such as hospital out-patient referrals. Confounding bias (where there are important differences between the groups being compared that are also related to the variable of interest) is also a potential E diorial