Juliet Goldbart

Interaction training for conversational partners of children with cerebral palsy: a systematic review

BACKGROUND Research has shown that children with cerebral palsy have difficulties acquiring communication skills and that conversation with familiar partners follows restricted patterns, which are characterized by high levels of partner control and childrens responsivity. Speech and language therapy often includes training for conversational partners to help to them recognize childrens communicative signals and to create opportunities for children to take a more equal and independent role in conversation. However, the effectiveness of this indirect therapy has not been demonstrated reliably. AIMS To review systematically all experimental research on communication training for conversational partners of children with cerebral palsy and to evaluate the effectiveness of this type of intervention. METHODS & PROCEDURES As part of a wider review, health, psychology and education electronic databases were searched up to December 2002 for reports of experimental studies on the training of conversational partners to facilitate the communication of children with cerebral palsy, which contained an element of control. References from identified studies were followed-up and relevant journals and conference reports were hand-searched. Identified studies were assessed for inclusion by the first author. Two reviewers independently abstracted data on the quality and content of each study. OUTCOMES & RESULTS Four studies were identified from five research reports that met the criteria for inclusion in the review, comprising three group studies and one single case experiment. Common targets for training were observed across the studies. These included positioning of the conversational partner and child for interaction, creating communication opportunities and responding to childrens communicative signals. Changes were observed in the conversation patterns used by conversational partners, which should facilitate the communication of children with cerebral palsy. However, the studies contain methodological flaws and as a result they cannot demonstrate that the changes were definitely a result of the intervention. CONCLUSIONS Research on the effectiveness of interaction training for conversational partners of children with cerebral palsy is in its early stages. Training has incorporated common targets, which are widely acknowledged by clinicians to affect the communication of children with motor disorders. Trends in behaviour change have been suggested by research to date, but further studies that address the methodological inadequacies of the original research are needed to evaluate the effectiveness of this type of intervention. Suggestions of ways to improve the design and reporting of future studies, that will allow the mapping of interventions to clients, are discussed in this review.

Direct speech and language therapy for children with cerebral palsy: findings from a systematic review

Children with cerebral palsy (CP) often have speech, language, and/or communication disorders and are referred to speech and language therapy (SLT). They may also be referred to SLT services for dysphagia: treatment of which is beyond the scope of this review. Although the exact prevalence of the communication disorders associated with CP is not known, it has been estimated that approximately 20% of children with a diagnosis of CP have severe communication impairment and are classified as non-verbal. Many more will have less severe speech and communication disorders as a consequence of their motor impairment, or disorders arising from speech, language, and cognitive processing deficits associated with CP.

Adherence to Eating and Drinking Guidelines for Adults With Intellectual Disabilities and Dysphagia

The extent to which 40 individuals with intellectual disabilities and dysphagia and their caregivers adhered to speech and language pathology dysphagia guidelines was evaluated. These individuals were observed having a meal across four settings. In addition to monitoring overall adherence, guidelines were split into separate sections corresponding to consistency modification of food and drinks, physical positioning, use of equipment and utensils, and support and prompting recommendations. Adherence to speech and language pathology recommendations was generally high, particularly regarding consistency modification that can help reduce the risks of aspiration and asphyxiation. Significant differences in adherence were found across settings, across type of guidelines, and between people who were fed by caregivers and those who fed themselves.

‘Happy and excited’: Perceptions of using digital technology and social media by young people who use augmentative and alternative communication:

Young people are using digital technology and online social media within their everyday lives to enrich their social relationships. The UK government believes that using digital technology can improve social inclusion. One well-recognized outcome measure for establishing social inclusion is to examine opportunities for self-determination. Individuals with physical disabilities and complex communication needs who use forms of augmentative and alternative communication (AAC) have lower social participation opportunities. The integration of mainstream digital technology into high-tech forms of AAC (voice output communication aids), and the recent appearance of voice output applications, or ‘apps’, on Apple and Android products, has provided increased opportunities for people who use AAC to engage with digital technology. Research exploring this area, especially in regard to online social media, with people who use AAC is extremely limited, and a specific gap for self-reported experiences exists within the UK. This article describes qualitative, interview-based, grounded theory research with 25 adolescents and young adults who use AAC about their use of digital technology and online social media. The data presented here are part of a larger study, and the findings within this article suggest that participants have a desire to use the internet and online social media as it is perceived to increase opportunities for self-determination and self-representation whilst enriching friendships. The wide diversity of literacy and language skills amongst participants, as well as accessibility challenges, mean collaborating with others and receiving technical support from educational settings, families and friends are vital.

Describing participants in AAC research and their communicative environments: Guidelines for research and practice

Purpose. People who use augmentative and alternative communication (AAC) vary widely in their skills and communication needs. Interventions have been developed to meet different needs, but have met with varied success. Attempts to discover why interventions succeed or fail are hindered by the lack of detailed description of the research participants and the environments in which they communicate. This paper reviews the information commonly given about AAC research participants and presents guidelines for the description of people who use AAC, their conversation partners and their communicative environments. Method. Electronic databases were searched for AAC intervention research reports published between 1990 and 2004. Data on research participants and their communication environments were extracted from reviewed papers. Information given in published papers and variables known to affect communication were presented to an expert group. A modified Nominal Group technique was used to decide what information should be reported in AAC intervention research. Results. Guidelines for participant description that link with the World Health Organization International Classification of Functioning, Disability and Health were developed from the results of the nominal group. Conclusions. Detailed information is needed to demonstrate efficacy of AAC interventions. Guidelines for participant description are presented and discussion of their utility is now needed.

‘It is not going to change his life but it has picked him up’: a qualitative study of perspectives on long term oxygen therapy for people with chronic obstructive pulmonary disease

BackgroundLong-term oxygen therapy (LTOT) extends life in patients with chronic obstructive pulmonary disease with severe hypoxaemia. Questionnaire-based studies of the effects of LTOT have not suggested uniformly positive findings. The few qualitative studies suggest that patients report benefits but also concerns about dependency on oxygen therapy. The aim of the study was to explore the views and experiences of COPD patients, their carers and the healthcare professionals who deliver these services, on the long-term use of oxygen therapy.MethodsFocus groups were conducted with 16 patients with from the LTOT service, six carers, and nine healthcare professionals (n = 31). Eleven patients with COPD, four carers and one staff manager (n = 16) participated in semi-structured interviews. Interviews and focus group were digitally recorded and field notes were taken. Data were analysed using the thematic network analysis approach.ResultsPatients and carers reported the benefits of LTOT including increased social activity, perceived improvements in health status and self-management in routine daily activities. Concerns were raised regarding stigma, dependency on LTOT and deterioration in health status. Staff accounts included negative perceptions, suggesting that LTOT was often inappropriately prescribed and under-used but recommended active patient management to address this challenge.ConclusionsLTOT has some beneficial effects in improving daily activities and social interaction of patients with COPD but also some limitations. Increased support and monitoring by healthcare professionals would address some concerns, as would better information for patients, carers and the general public.

“Everything was spiraling out of control”: Experiences of anxiety in people with chronic obstructive pulmonary disease

OBJECTIVE This study sought to elicit and describe the first-hand experiences of anxiety in community patients with stable chronic obstructive pulmonary disease (COPD). Anxiety is common among patients with COPD. Clinical anxiety affects up to two thirds of patients, leading to reduced quality of life and physical functioning. There has been little research exploring the experiences of anxiety in patients with COPD, particularly in individuals with stable respiratory symptoms. METHODS We interviewed 14 community patients with stable COPD and self-reported symptoms of anxiety. Data were analyzed using thematic network analysis to develop basic, organizing, and global themes. RESULTS Patients reported intense thoughts of fear, hopelessness, and confusion that were associated with the anxiety and panic attacks. Self-management was important, particularly self-talk coping strategies. CONCLUSIONS Unmanaged anxiety seems to be particularly distressing for patients with COPD. Self-management strategies can be highly effective in preventing and managing anxiety.

Partnership in Action: Introducing family‐based intervention for children with disability in urban slums of Kolkata, India

This paper presents the processes and findings of a three‐year action research project implemented in a small number of urban slums in the city of Kolkata (previously known as Calcutta), the capital of the state of West Bengal in Eastern India. The project involved partnership between an established institute for cerebral palsy in Kolkata, two United Kingdom (UK) universities and three non‐government organisations working on community development in the urban slums of Kolkata. These diverse groups working jointly were able to reach low‐income, disadvantaged families with low literacy skills, providing individualised home‐based intervention for their child with disabilities.

Emergence of working memory in children using aided communication

Purpose – Working memory (WM) is a key component of effective and efficient communication in typical communicators, with, potentially, even greater significance for those who benefit from augmentative communication. This study aims to explore the emergence of WM strategies in children with complex communication needs who may be reliant on aided communication strategies.Design/methodology/approach – A quasi‐experimental repeated measures, multi‐factorial research design, comparing 30 children with complex communication needs (CCN) aged three to six years and 30 age‐matched typically developing peers. Picture stimuli representing verbs and adjectives in three categories: control words, long words and phonologically similar words are presented visually or silently in sequences of increasing length to establish each participants memory span.Findings – Articulatory rehearsal does not appear to be used as a memory strategy with verb material. With adjective material, there is limited evidence of emerging artic...

Beliefs and Attitudes of Primary School Teachers in Mumbai, India Towards Children Who Stutter

Beliefs and attitudes of teachers in Mumbai, India, towards children who stutter were investigated using questionnaires and semi-structured interviews. Questionnaires were completed by 58 teachers, four of whom were subsequently interviewed. Results from the questionnaires showed that teachers believed that a child’s environment influenced stuttering and that children who stuttered had the potential to overcome the condition. They did not agree that children who stuttered were quiet and shy. Two global themes emerged from the interviews. These were teachers’ philosophies about stuttering, and their perceived roles in supporting children who stutter. All teachers reported limited experience of children who stutter, but their responses indicated a desire to do their best to support such children in the classroom. Stuttering was, however, considered to be less important to teachers’ working lives than dyslexia.