Katja Laakso

Communication and Huntington's disease: qualitative interviews and focus groups with persons with Huntington's disease, family members, and carers

BACKGROUND As an effect of the cognitive, emotional and motor symptoms associated with Huntingtons disease, communicative interaction is often dramatically changed. No study has previously included the subjective reports on this subject from individuals with Huntingtons disease. AIMS To explore the qualitative aspects of how communication is affected by Huntingtons disease from a triangular perspective represented by individuals with Huntingtons disease, family members and professional carers. METHODS & PROCEDURES Eleven persons with Huntingtons disease, seven family members and ten carers were interviewed in focus groups or individually, using a semi-structured interview guide. The interviews were transcribed verbatim and analysed using thematic content analysis, resulting in a number of free codes concerning communication. The codes describing related phenomena were merged into categories. Categories were analysed and reanalysed resulting in three major themes, common to the three groups of participants. OUTCOMES & RESULTS The themes found were: Communication has changed; Factors that influence communication negatively; and Factors that influence communication positively. Subcategories differed between the three groups. All participants seemed to acknowledge the variability and lack of initiative in communication. The persons without Huntingtons disease focused on the changes in terms of speech, language comprehension, the lack of depth in conversation and the need to make adjustments, while the persons with Huntingtons disease focused on the effort and concentration demanded to communicate. They described the change they perceived in their communicative ability in terms of loss. All participants thought that an emotional load had a negative impact on communication. Furthermore, individuals with Huntingtons disease stressed that other peoples speed of communication had a negative impact, while family members and carers stressed that things such as personality changes in persons with Huntingtons disease and lack of eye contact with them influenced communication negatively. All participants acknowledged the need for increased participation in social life in order to enhance communication. CONCLUSIONS & IMPLICATIONS In brief, persons with Huntingtons disease expressed a need for a richer social life and more (adjusting) conversation partners, family members expressed a need for more support and professional carers wanted more information about Huntingtons disease. The triangular perspective utilized in the present study completed the picture of the communicative consequences of Huntingtons disease. In particular, it became clear, that the insights of persons with Huntingtons disease can and has to be included in communicative assessments and plans for intervention.

Assessing high-level language in individuals with multiple sclerosis : a pilot study

This study describes the development of a test battery to assess high-level language function in Swedish and a description of the test performances of a group of 9 individuals with multiple sclerosis (MS). The test battery included tasks such as repetition of long sentences, understanding of complicated logicogrammatical sentences, naming famous people, resolving ambiguities, recreating sentences, understanding metaphors, making inferences, defining words. The MS group included individuals with self-reported language problems as well as individuals without any such problems. Their performances were compared to a group of 7 control subjects with a KruskalWallis one-way ANOVA which indicated significantly different total mean scores. Post hoc analysis with Mann-Whitney Utests revealed that the group with self-reported language problems had significantly lower mean scores when compared to control subjects and to MS subjects without self-reported language problems. None of the language difficulties were detected by a standard aphasia test.This study describes the development of a test battery to assess high-level language functions in Swedish and also the test performances of a group of nine individuals with multiple sclerosis. The test battery included tasks such as repetition of long sentences, understanding of complicated logico-grammatical sentences, naming famous people, resolving ambiguities, recreating sentences, understanding metaphors, making inferences, and defining words. The multiple sclerosis group included individuals with self-reported language problems as well as individuals without any such problems. The performances of these two subgroups were compared to that of a group of seven control subjects using a Kruskal-Wallis one-way ANOVA. Post hoc analysis with Mann-Whitney U-tests revealed that the group with self-reported language problems had significantly lower mean scores when compared to control subjects and to multiple sclerosis subjects without self-reported language problems. None of the language difficulties were detected by a standard aphasia test.

Making Sense of the Cleft Young Adults’ Accounts of Growing Up with a Cleft and Deviant Speech

Individuals born with a cleft lip and palate risk developing a deviant appearance and speech during childhood and sometimes also as adults. In this study, 13 young adults born with a cleft (lip and) palate, who had had deviant speech in adolescence, participated in semi-structured interviews. The core category Making sense of the cleft, comprising the two categories Shaping one’s attitude to the cleft and Dealing with being different with seven subcategories, describes the processes of developing self-image in relation to the cleft. The findings are believed to be relevant for individuals born with a cleft, their parents and caregivers.

Syllable Repetition vs. Finger Tapping: Aspects of Motor Timing in 100 Healthy Adults.

In this study we systematically compared syllable repetition and finger tapping in healthy adults, and explored possible impacts of tempi, metronome, musical experience, and age on motor timing ability. One hundred healthy adults used finger-tapping and syllable repetition to perform an isochronous pulse in three different tempi, with and without a metronome. Results showed that the motor timing was more accurate with finger tapping than with syllable repetition in the slowest tempo, and the motor timing ability was better with the metronome than without. Persons with musical experience showed better motor timing accuracy than persons without such experience, and the timing asynchrony increased with increasing age. The slowest tempo 90 bpm posed extra challenges to the participants. We speculate that this pattern reflects the fact that the slow tempo lies outside the 3-8 Hz syllable rate of natural speech, which in turn has been linked to theta-based oscillations in the brain.

Communicating with individuals receiving home mechanical ventilation: the experiences of key communication partners.

Abstract Purpose: The aim of the study was to explore the communication experiences of key communications partners (CPs) of individuals receiving home mechanical ventilation (HMV), with particular emphasis on the possibilities, difficulties and limitations CPs experienced in communication, possible support given to facilitate communication and exploring what made a skilled communicator. Method: A qualitative research design using interviews was used. The participants included 19 key CPs of individuals receiving HMV. Results: The analysis resulted in five themes: Encountering communication limitations, Functional communication strategies, Being a communication facilitator, Role insecurity and Emotional reactions and coping. The findings revealed that CPs needed to develop partly new reference frames for communication. In particular, participants emphasised the need to understand and interpret subtle details in the communicative interaction. Conclusions: The findings are discussed in the light of previous research, in particular an earlier study exploring another perspective; the ventilator-supported individuals’ experiences of communication. Issues relating to the educational needs of CPs of individuals receiving HMV are discussed. The results are intended to enhance understanding of the challenges that individuals receiving HMV and their CPs face with communication, which should be of relevance not only to speech therapists, but for all healthcare practitioners in the field of HMV. Implications for Rehabilitation Individuals receiving home mechanical ventilation (HMV) as well as their communication partners (CPs) face many challenges with communication. Skilled CPs adopt a variety of communication strategies and roles to support the communication of individuals receiving HMV and to enhance empowerment. It is important to promote care continuity, as experience is an important factor in being a skilled communicator. Speech therapists should play an active role in the management of individuals receiving HMV and their CP training.

‘I’m almost never sick’: Everyday life experiences of children and young people with home mechanical ventilation

Developments in medical technology and treatment have increased the survival rates of children with serious illnesses or injuries, including those receiving home mechanical ventilation, which is a small but growing group. The aim of this study was to explore everyday life experiences of children and young people living with home mechanical ventilation (HMV). Data were obtained through interviews with nine participants. The interviews were supported by photovoice methodology: photographs taken by the participants before or during the interviews were used to facilitate conversation. Interview data were analyzed using qualitative content analysis. The findings revealed that everyday life on a ventilator can be described as including power but simultaneously as characterized by vulnerability to the outside world, comparable to balancing on a tightrope. Various types of technology, both information and communication technology (ICT) and vital medical technology, enabled the participants to engage with the world around them. This study contributes knowledge about the experiences of children and young people with HMV, who depict their lives as good and valuable. The study also underscores, when designing plans and home support, it is necessary to take a sensible approach to personal experiences of what a good life is and what resources are needed to attain and maintain health.

Aphasia and literacy-the insider's perspective.

Abstract Background Few studies have investigated how people with aphasia (PWA) experience literacy skills. Taking the insiders perspective is a way to increase understanding of the individual experiences of literacy among PWA, which may have clinical implications. Aims To describe how literacy, i.e., reading and writing, is experienced in everyday life by PWA and to gain insight into the part played by literacy skills in their lives. Methods & Procedures A qualitative descriptive research approach was taken. In‐depth interviews were conducted with 12 PWA (six women and six men) who had all lived with aphasia for at least 6 months post‐stroke. The interviews were analysed using qualitative content analysis. Outcomes & Results One overarching theme emerged from the data: literacy as an ongoing recovery process. Based on this overarching theme, two subthemes were identified: changes in conditions for literacy (experiences of reading and writing initially post‐onset compared with experiences at the time of the interview); and facing expectations about literacy (participants’ own and other peoples expectations of them in terms of literacy). Conclusions & Implications The findings are important at a general level in that they indicate that PWA are able to articulate their individual experiences and thoughts about literacy, i.e., reading and writing. Specifically, PWA in this study experience literacy as playing an essential part in their lives and the findings imply that personal experiences are important in the design of reading and writing interventions in speech and language therapy.

Signs of dysarthria in adults with 22q11.2 deletion syndrome

The aim of the study was to investigate how adults with 22q11.2 deletion syndrome (22q11DS) performed on dysarthria and intelligibility tests compared with a control group. Ten participants with confirmed 22q11.2 deletion, five males and five females with a mean age of 31 years (range: 19–49), were compared with a control group matched for gender and age (five males and five females, mean age: 32 years, range: 19–49). Assessment of non‐verbal and verbal tasks reflecting respiration, phonation, oral motor function, velopharyngeal function, articulation, and prosody was performed as well as the Swedish Test of Intelligibility (STI). All assessments were made by two raters; inter‐rater and intra‐rater reliability was acceptable. The participants with 22q11DS had significantly more problems than the control group on all investigated dimensions except the STI. Overall, the severity of their speech deviation was rated as mild to moderate. The largest difficulties were found regarding speech respiration, phonation, oral motor function, and velopharyngeal function. The results of the present study suggest that a neurological etiology could be added to the previously described structural etiology explaining the speech difficulties found in 22q11DS. Signs of difficulties in both speech motor planning and speech motor programming were found. Further studies are needed to confirm the results, as are studies of the association between structural brain abnormalities and neurological speech symptoms. For clinical purposes, it is important that clinicians have knowledge about the variable speech symptoms that may occur in individuals with 22q11DS and that they be aware of the complexity of the etiology of such speech symptoms.