Young people and CP - experiences of health, well-being and support needs

Last time, I blogged about quality of life in children and adolescents. This blog stays close to the topic writing about young people with CP embarking on their road to independence, the challenges they face and their dreams about their future. Elisabet Björquist and colleagues from Lund University explored how young people with CP experience their own health, well-being and support needs on their way to becoming adults. They were hoping that the views will help them to see how transition programmes work in Sweden and whether there is anything that could be done to make transition easier for young people with CP.

The authors interviewed 12 Swedish 17-18 year olds either individually or in a group setting to learn about their views on important topics such as family, friends and love, hopes for the future and challenges in daily life and the support they would need. During the interviews, the authors used pictures to guide them through the discussions. 

From the interviews it became clear that they were looking forward to being adults, but were not always sure whether they were ready yet. They voiced the same hopes for their future as any other young person about to leave home: stressing how important good friends are and that finding a partner would be nice too, but sometimes being unsure how to get to know people. On the other hand they were aware of needing continued support to gain more independence. Not just for learning new skills such as cooking but also doing things like preparing a sandwich or tying shoe laces. 

The young people look forward to becoming more independent and think that the process should be a gradual one. Knowledge on what kind of support to expect and where to find it will help them through the process and allow them to take part in activities that matter to them.

Björquist, E.,  Nordmark E. & Hallström, I. (2014). Living in transition – experiences of health and well-being and the needs of adolescents with cerebral palsy. Child: care, health and development, 41(2), 258–265

Quality of life of young people with CP

I recently came across an article published in the The Lancet on quality of life (QoL) of children and teenagers with CP. It may not be directly related to speech therapy in young people with CP, but it makes for an interesting reading nonetheless. Allan Clover from Newcastle University in England together with colleagues from six further European countries provide a glimpse into the wellbeing of teenagers with CP. 

They carried out a large scale study to discover how best to promote quality of Life of Children with CP in Europe. It is called SPARCLE, which stands for the Study of PARticipation of Children with CP Living in Europe. Across Europe more than 800 8-12 year old children took part in the project. About 5 years later the very same children - now teenagers - were asked about their wellbeing again. The great thing about seeing the same children is that the researchers can look at long-term development of QoL, and whether some problems in childhood can predict QoL for teenagers with CP. The researchers also compared the teenagers’ answers with that of their peers.

How was the data collected? The researchers went to visit the teenagers at home. They also spoke to their parents. The teenagers filled in a questionnaire called KIDSCREEN. It measures QoL from their view looking at physical, mental and social wellbeing. Their parents filled in a strengths and difficulties questionnaire.

What did they find? The views of about 430 children were analysed. Goods news first: the teenagers with CP enjoy by and large the same QoL as their peers. Only social support and peer relationships stood out. It seems that the teenagers find it a bit harder to develop new friendships. 

The not so good news: the teenagers reported pain more often than they did when they were children. The researchers also found that pain as well as seizures led to lower wellbeing ratings overall. The researchers also found that walking ability predicted quite well how (in)dependent the children felt at this stage in life.

What can the findings tell us? The authors of the study were happy to see that QoL reported by the teenagers is not really different from that of their peers. They also think that the teenagers might need help to form new friendships; and that more research should be done to find out why peer relationships seem to get worse for many young people with CP…I think that it would be very worthwhile to find out whether communication is one of the areas that can be supported to improve their relationships.

Colver, A. et al. (2015). Self-reported quality of life of adolescents with cerebral palsy: a cross-sectional and longitudinal analysis. The Lancet, 385, 705-716.

Does speech therapy change voice quality in children with CP?

Speech therapy focusing on aspects such as breath control and speech tempo has shown to improve voice quality and articulation. These changes can boost intelligibility, i.e. how well speakers are understood by listeners. Nick Miller and colleagues therefore expected that work on breathing should help improve intelligibility. Whether this is indeed the case was tested in a study published in 2013. Specifically, the authors explored whether perceived voice quality is altered following a speech therapy focusing on respiration and phonation.

 

The study used single word and connected speech data of 16 children with CP (mean age was 14) collected before and after a six-week block of speech therapy. 16 SLTs took part in the perception study. They were asked to rate the voice quality of the speech files using the GRBAS scale. This is an evaluation scale that perceptually rates the voice quality for 5 parameters:  

     

 - Grade (degree of voice abnormality)
 - Roughness (steadiness of vocal cord function)

 -  Breathiness (extend of air leakage)

 -  Asthenia (weakness)

 -  Strain (tension)

Each parameter is assigned a value on a 4-point scale, where 0 is normal and 3 is severe. The SLTs were specialists in voice problems and knew how to use the scale. They rated the speech files assigned to them without knowing whether it was a recording made before or after therapy.

Findings showed that the children with CP had voice problems - before and after therapy. They also showed that the perceived changes in voice quality were small, which means that the children’s voice did not change much as a result of the therapy. This in turn means that voice changes were not the reason for the improvements seen for intelligibility. And indeed, only asthenia, i.e. weakness of the voice, was found to have some importance for intelligibility. Overall, other aspects such as tempo and speech melody will need exploring to explain the improvements in intelligibility observed after therapy.

Miller, N., Pennington, L., Robson, S., Roelant, E., Steen, N., Lombardo, E. (2013). Changes in Voice Quality after Speech-Language Therapy Intervention in Older Children with Cerebral Palsy, Folia Phoniatrica et Logopaedica, 65(4), 200-207.

Activity and participation in children with CP

Research has shown that children with CP and speech problems can find it harder to engage with others in social situations than children with CP who do not have any speech difficulties. Cristina Mei and colleagues from Australia built on these findings trying to find out how speech problems can affect children’s day-to-day interactions in different communication settings such as home, school and community. 

Seventy-nine 5- to 6-year olds from Victoria, Australia, took part in the study. A range of scales were used by the first author to collect information on the presence of speech problems, and the severity of speech problems reflected in level of intelligibility and functional communication, i.e. how well children get their messages across: 

1. Viking Speech Scale (VSS) to judge presence of speech problems 
2. National Technical Institute for the Deaf (NTID) rating scale to rate intelligibility (using connected speech obtained during free-play between parent and child
3.  Functional Communication Classification System (FCCS) and Communication Function Classification System (CFCS) to measure functional communication

In addition, parents were asked to rate on a 1 to 10 point scale whether their children find it easy or difficult to participate in activities within home, school and community settings because of their ability to communicate.

Results revealed that 90% of children did show some speech problems. This is a high number compared to other studies, which found that between 30 to 70% of children with CP have some form of communication problem. The authors think that maybe only those parents who were concerned about their children’s speech were interested in participating. The analysis of the intelligibility scores also showed that over half of the children were highly intelligible. The authors also found that about 60% of children were good at getting their messages across. In addition, a clear link between speech skills and activity and participation was found with children with mild speech problems being more successful communicators in social situations than children with severe speech problems.

The study also revealed that participation was easiest in familiar environments such as home, and more difficult in school and community, although this was influenced by the severity of the speech problems. The good news is that children with mild problems were equally successful in participating in social interactions than children without speech problems. This means that mild speech problems did not have any negative effects on communication – at least for the children in this study. It can therefore be reasonably concluded that intervention to increase social participation is likely to be more important for children with moderate to severe speech problems.

Mei, C., Reilly, S., Reddihough, D., Mensah, F. & Morgan, A. (2014). Motor speech impairment, activity and participation in children with cerebral palsy. International Journal of Speech-Language Pathology, 16(4), 427-435.

Therapy outcome measures for children with dysarthria

A recent discussion with a parent and a speech and language therapist about how best to measure whether therapy has had an effect made me choose this article for this month’s blog post. 

I am not telling you anything new when I say that speech therapy can have a positive impact on a person’s communication and wellbeing. However, services are under increasing pressure to prove that their therapies are effective – from a clinical as well as cost-effective point of view. According to Pamela Enderby, one of the leading researchers on speech and language therapy and health interventions in the UK, outcome measures are important for evaluating and improving clinical services as they can measure communication changes in individuals, but also allow for comparison across services.  

Outcomes measures try to establish whether an individual has benefitted from therapy. There are several reasons why this is this difficult to find out for an area such speech and language therapy: 1) there are a wide range of therapy options for a child with dysarthria depending on the communication problem; 2) it is one thing to measure improvement in speech e.g. intelligibility, but how do you measure wellbeing, improved coping skills or increased confidence, which can all contribute to improved communication?

According to Enderby, Therapy Outcomes Measures or TOM (Enderby et al., 2006) can capture these more holistic aspects of therapy. TOM allows clinicians to describe the abilities of a child for impairment, communication activity, participation and wellbeing before and after therapy. The four features are rated on an 11 point scale (0 – severe to 5 – normal for age and sex) using the usual assessment procedures. I see TOMs strengths in the fact that they are a set of scales which are based on the International Classification of Functioning, Disability and Health framework (WHO). It is a quick tool that has proved reliable for a range studies, and can be applied irrespective of the various assessment procedures that exist in services. 

On the other hand, I think that in some cases a qualitative analysis of the data would be helpful to better understand results. For instance, no change in the rating could be considered a positive outcome in cases where the dysarthria is due to progressive disorders. Also, training may be needed to ensure consistency in the use of the scale. Being a member of review panels, I know how differently the same work can be viewed, with some judges, for instance, never exhausting the full scoring range available to them. After all, judging is the act or process of forming an opinion or making a decision after careful thought, i.e. it has a subjective element to it. This, however, should not stop us in our endeavour to improve the quality of the services we offer.

Enderby, P. (2014). Use of extended therapy outcome measure for children with dysarthria. International Journal of Speech-Language Pathology, 16(4), 436-444.