Many children have communication difficulties that are not picked up in the preschool period.1 Delays in diagnosis and intervention are a cause for concern to parents, and this concern in itself is statistically significantly related to poor language development.2 However, little is known about the way that GPs and health visitors react to parents' initial worries about their child's language development. This paper reports on the experiences of one group of parents whose children with persistent speech and language difficulties were later admitted to a specialist language unit.
Background
It is estimated that almost a fifth of parents in Britain are concerned about their child's speech and language development at any one time.3 Professional opinion is divided on the significance of early developmental language delay because almost 60% of speech and language problems resolve spontaneously by the age of 3 years.4,5 However, continuing speech and language impairment can result in later behavioural and psychiatric problems, poor academic performance, and long-term personal and social difficulties.6,7
There is no universal screening for speech and language difficulties because of the doubtful value of available screening instruments, many of which lack concurrent validity, sensitivity and specificity, and do not report sample size.8 In the absence of formal screening, health visitors are the main referrers to speech and language therapy preschool, although there is little information in the literature on how they or GPs make their judgements to: reassure; watch and wait; or refer for specialist intervention (such as speech and language therapy).8 Speech and language difficulties may occur as part of a more global neurodevelopmental problem.9 However, many children with ‘specific language impairment’ have difficulties that are not explained by a primary medical condition, hearing loss, or other developmental disorder.3 These children present a major challenge to health professionals in the early preschool years, because it is often not possible to predict at the time of identification which children, particularly very young children, are likely to have persistent problems.4,5,8 Variations between children make prognosis difficult.9 Parent information can help the clinician in making referral decisions, although there is some debate as to whether parents have sufficient knowledge of normal language development to detect abnormalities in their child's speech and language system.3 To explore the issue further, this paper presents an account of the experiences of one group of parents whose children had persistent speech and language problems, to the point where all were later admitted to a language unit.
METHOD
Participants
A total of 180 children were identified from language unit records in two Local Education Authorities (LEAs) in Merseyside. All of the children in the study had identified speech and language difficulties that were sufficiently severe to warrant language unit admission. Children whose problems had resolved spontaneously were not included.
Data collection took place between 1996 and 1998 and was part of a wider, unpublished study looking at children's experiences of moving from language units into mainstream schools. Children still in language units, and those with primary medical conditions, complex receptive problems, or structural or neurological abnormalities did not take part in the study. Parents of 180 children were identified, of whom 138 were eligible to take part. Of these, 30 parents showed initial interest but failed to respond to appointment letters or telephone calls to arrange an interview date; three had moved house with no forwarding address; six parents refused to take part and four parents were not at home for pre-arranged visits. Of the remaining 95 parents, 40 took part, giving a 29% response rate.
How this fits in
The role GPs and health visitors play in the detection of speech and language problems in young children is not well documented. However, early detection and intervention is crucial if these children are to have good long-term outcomes. This paper reports on the experiences of one group of children and their parents, and shows that this is an important area for examination in the drive to improve children's services in primary care.
At the time of the study, all but four of the children were in primary school, with ages ranging from 5 years 3 months to 16 years 9 months (mean = 9.82; standard deviation = 2.39). Thirty of the children were male and 10 female. The LEA's administration sent an introductory letter and information sheet to parents, and all parents gave written consent before the study began.
A chronological or life-history approach10 was used for parent interviews, which allowed parents to describe the child's speech and language development from birth to eventual language unit admission. An interview guide exploring key pre- and post-language-unit topics was used to cover key areas; for example, age of the child at detection, timing of diagnosis, and referral for speech and language therapy. Prompt questions or probes were used as necessary,10 and all parent interviews were tape-recorded in the home. Interview transcripts were annotated with words or phrases to identify themes, using the same words that parents had used in the text. A list of main themes and sub themes was constructed, which allowed for detailed checking of each transcript and also comparison of themes to be made across cases. All transcripts were coded. In the preliminary stages of analysis, an independent researcher randomly assessed 20% of transcripts to establish consensus on themes identified. Where necessary, discussion took place until full agreement was reached, and the agreed coding frame was used to code and recode transcripts as necessary. Where there was uncertainty regarding contextual meaning, tape recordings and field notes were listened to again and transcripts re-read, to check that responder views had been accurately represented.
RESULTS
In 28 cases (70%), parents could remember when they first noticed something wrong with their child's speech and language development. Of these, 17 reported problems before the child reached the age of 2 years (in two cases mothers noticed their child was making no sound from as early as 8 months). Nine parents reported problems between 2–3 years, and two between 3–4 years.
Out of 40 parents, four said that when first concerned about their child's speech and language development, they consulted their GP or health visitor, and were referred directly for speech and language therapy assessment. Of these, one child had stopped talking following meningitis; one was only making grunting noises at the age of 2 years; one child had borderline receptive problems, and one child's parents thought he was deaf.
Six children (aged 8–18 months) were referred for hearing tests by their GP or health visitor when parents consulted with concerns over the child's speech and language development. Two of these children had persistent hearing difficulties, and were referred for speech and language therapist assessment at between 2 and 2.5-years old. The other four children passed their hearing tests. Of these, one was referred by his GP for a full neurological assessment, which showed ‘some delay in him in the way he responded to things’. After that he attended a child psychology unit and was later referred for speech and language therapy. His mother said:
‘I've got no criticism whatsoever of the help I've had. I mean it makes me shudder to think that had I not decided off my own bat to go to the doctors and start the ball rolling I don't know what would have happened.’
Another child from this group had a family history of speech problems, and at 2 years old was making sounds but had no clear speech. The family health visitor arranged a speech and language therapy referral, and regular therapy began shortly afterwards. The other two children in this group reached the age of 3–3.5 years before being referred for speech and language therapy, one by a preschool nursery, and the other by a health visitor.
Of the remaining 30 children, three attended hospital paediatric clinics, one for coeliac follow-up, one for checks of a large head circumference at birth, and one for an enlarged spleen. Of these three children, one was referred for speech and language therapist assessment by her paediatrician at age 2 years, while despite parental concern, the remaining two children reached the age of 4 years before a similar referral was made. One of these mothers said:
‘Come 18 months I was sort of getting concerned and would mention it to different ones [at the hospital] and they would say, “oh, some are slower than others”. They would just turn round and say that one day he'll come out with a mouthful and you'll wish he never had … you know, he'll never stop talking.’
One 3-year-old child was an inpatient for several weeks on a paediatric orthopaedic ward, where one of the staff noticed that the child spoke little and that speech sounds were ‘odd’. The family had previously noticed that the child was unable to form a two-word sentence, and words sounded wrong, but had decided to ‘deal with one thing at a time’ and let the child recover from two separate operations before requesting help with speech and language development. The local clinic subsequently referred the child for speech and language therapist assessment.
Of the remaining 26 children, six were referred by their nurseries for speech and language therapist assessment, and of these, four parents had been concerned about their child's speech and language development and had previously raised these concerns with primary healthcare professionals. Two children, who attended a child psychology unit because of temper tantrums, had finished nursery and were due to start school before the unit referred them for speech and language therapist assessment.
The remaining 18 children had difficulties in getting speech and language therapist referral in primary care settings. Parents were not satisfied with GP and health visitor responses to their concerns:
‘The doctor that we saw at first was just … it seemed as though he didn't want to listen. He was like … “Just go away. It's all right, it'll go on its own”.’
In many cases, parents said they felt those they approached did not take their concerns seriously enough:
‘After he was 2, I felt concerned about his speech and I kept going to the clinic and pestering them but no way. They kept saying, “well, he's only 2”. And I kept saying, “yes, but he's going to nursery”.’
In 10 cases, parents specifically remembered the way health professionals responded to their concerns. Four mothers were advised not to worry because ‘the older child is speaking for him/her’; two mothers were told ‘he/she will speak when ready’; two mothers were told ‘the speech will come on its own’; and two mothers were told to ‘wait a while longer and see what happens’.
Some mothers commented on the lack of follow up:
‘He was 2 when I went to my health visitor and then she said, “leave him till he's 3,” and he didn't improve. She didn't come back. I went and they actually said he should have really been looked at earlier which I was really annoyed about.’
After repeated unsuccessful visits to surgery or clinic, many mothers said they began to think that health professionals considered them ‘neurotic’ or ‘over anxious’, or that they were worrying over nothing.
For the group as a whole, an average of 2 years passed between the first approach by the parent to health professionals and subsequent referral to speech and language therapy. Six parents were satisfied with the way their concerns were handled by primary healthcare professionals, but the majority expressed some dissatisfaction at the lack of urgency of referral from health professionals in both primary and secondary care. Only one parent said developmental screening had detected a problem with their child's speech and language.
