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Patients’ and communication partners’ experiences of communicative changes in Parkinson’s disease

JOHANSSON, Inga-Lena
SAMUELSSON, Christina
MULLER, Nicole
February 2021

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Purpose: The aim of the present study was to investigate the experiences of people with Parkinson’s disease and their close communication partners regarding disease-related communicative changes and participation in everyday conversations.

 

Materials and methods: Semi-structured qualitative interviews were conducted with six dyads consisting of a person with Parkinson’s disease and a close communication partner. The interview material was analysed through thematic analysis.

 

Results: The main theme was the experiences of barriers and facilitators for participation in conversations. Subthemes were experiences related to changes in voice and articulation, language and cognition, body language and facial expressions, fatigue, self-image, communicative initiative, and familiarity with conversation partner. The results show individual variation. A change observed in almost all dyads was the person with Parkinson’s disease participating less in conversations.

 

Conclusions: Assessment and interventions should be based on a broad perspective on communication, and individuals’ priorities should be foregrounded in intervention planning. Both the person with Parkinson’s disease and communication partners need to make adjustments for communication to work. Therefore, close communication partners should be included in assessment and intervention of communication in Parkinson’s disease from an early stage.

Does the criminal justice system treat disabled people fairly? Inclusive justice: a system designed for all

EQUALITY AND HUMAN RIGHTS COMMISSION
April 2020

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The UK Equality and Human Rights Commission launched an inquiry to understand the experiences of disabled defendants and accused people in the criminal justice system. They looked at:

  • whether their needs are properly identified
  • the types of adjustments being made to accomodate their needs, and
  • whether they can fully participate in court processes and understand the charges they face.

Based on their findings, recommendations are made to UK Governments.

 

The use of video hearings was rapidly expanded in response to the coronavirus pandemic. In April 2020, interim findings from this inquiry were released to help mitigate the risks that this technology poses to disabled people in the criminal justice system.

Transformative equality: Court accommodations for South African citizens with severe communication disabilities

WHITE, Robyn M
BORNMAN, Juan
JOHNSON, Ensa
TEWSON, Karen
NIEKERK, Joan van
April 2020

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Background: Persons with disabilities are generally at greater risk of experiencing violence than their peers without a disability. Within the sphere of disability, individuals with severe communication disabilities are particularly vulnerable and have an increased risk of being a victim of abuse or violence and typically turn to their country’s criminal justice system to seek justice. Unfortunately, victims with disabilities are often denied fair and equal treatment before the court. Transformative equality should be pursued when identifying accommodations in court for persons with communication disabilities, as the aim should be to enable such individuals to participate equally in court, without barriers and discrimination.

 

Objectives: This research aimed to identify court accommodations recommended by legal experts, which could assist individuals with severe communication disabilities in the South African court.

 

Method: A qualitative design was used to conduct a discussion with a panel of legal experts.

 

Results: Using Article 13 (Access to Justice) of the Convention on the Rights of Persons with Disabilities (CRPD) as a human rights framework, four themes were identified: equality, accommodations, participation and training of professionals.

 

Conclusion: Foreign and national law clearly prohibits discrimination against persons with communication disabilities because of their disability and state that they should be given fair and equal access to the court system. For transformative equality to be achieved, certain rules and laws need to be changed to include specific accommodations for persons with communication disabilities so that they may be enabled to participate effectively in court in the criminal justice system.

 

 

 

African Journal of Disability, Vol 9, 2020

Environmental Accessibility Assessment for People with Vision, Hearing and Speech Disabilities in Mongolia

BATDULAM, Tumenbayar
CHIMEDSUREN, Оchir
URANCHIMEG, Davaatseren
ENKHTSETSEG, Byambaa
2019

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Purpose: The main objective of this paper was to assess environmental accessibility for people with vision, hearing and speech disabilities in Mongolia, with particular focus on public buildings and public transportation.

 

Methods: A standardised internationally-used questionnaire, consisting of 29 questions, was used for the accessibility of public buildings assessment.  The questionnaire results were grouped into categories and descriptive statistics were obtained. To determine quality and accessibility to public transportation a standardised sheet, consisting of 51 questions from the internationally accepted SERVQUAL, was used. This model is commonly used for measurement of the discrepancies between actual performance and customer expectations.

 

Result: Assessment of public buildings in Mongolia revealed that they were moderately accessible for people with vision, hearing and speech disabilities. The assessment of public transportation found that the discrepancy between actual performance and customer expectation is the highest across all indicators for people with hearing and speech impairments.

 

Conclusion: The research findings indicated a strong need to pay closer attention to the current environmental unfriendliness and inaccessibility faced by people with vision, hearing and speech disabilities.

Multilingualism and augmentative and alternative communication in South Africa – Exploring the views of persons with complex communication needs

TONSING, Kerstin M.
Van NIEKERK, Karin
SCHLUNZ, Georg
WILKEN, Ilana
2019

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Background: Augmentative and alternative communication (AAC) can assist persons with complex communication needs to communicate competently with a variety of communication partners in a variety of contexts. However, AAC systems and intervention often do not take multilingual aspects into consideration.

 

Objective: This small-scale exploratory study had three aims, namely: (1) to describe the self-reported language skills of multilingual South African adults using AAC, (2) to describe the languages and communication modalities they used in interaction and (3) to obtain their views regarding access to various languages.

 

Methods: Twenty-seven adults using AAC were recruited via an empowerment programme, as well as an email list for persons interested in AAC, and provided responses to a questionnaire. To compensate for access and written language challenges, the questionnaire was administered with help and/or as a face-to-face interview where needed. Responses were analysed using mostly descriptive statistics.

 

Results: Participants generally could not express themselves in all the languages they understood and were regularly exposed to. Speech-generating devices specifically gave access almost exclusively to English. Participants expressed a desire to increase their expressive language repertoire, and mentioned both limitations of communication technology as well as their own literacy skills as barriers to overcome in this regard.

 

Conclusion: In order for multilingual South African adults using AAC to express themselves in multiple languages, appropriate AAC systems and interventions as well as literacy learning opportunities need to be developed and provided.

 

African Journal of Disability, Vol 8, 2019

Views of children with cerebral palsy and their parents on the effectiveness and acceptability of intensive speech therapy

PENNINGTON, Lindsay
RAUCH, Rosie
SMITH, Johanna
BRITTAIN, Katie
March 2019

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Purpose: To understand children and parents’ views of the effectiveness and acceptability of intensive dysarthria therapy.

 

Materials and Methods: Twenty-two children with cerebral palsy and dysarthria joined a pilot RCT comparing intensive therapy and usual care. Children (n = 11) allocated to dysarthria therapy comprising three 40-minute sessions per week for six weeks and their parents (n = 11) were interviewed two weeks before and six weeks after therapy. Interviews were transcribed verbatim and analysed thematically.

 

Results: Analysis revealed five themes: Motivations, My new voice; The new me; I can do more; Success rooted in therapy design. Children had received little therapy for speech and were keen to improve intelligibility. Overall, therapy was viewed as effective. Participants described changes in children’s speech production, which they associated with increased speech intelligibility. Children were described as more confident following the therapy, to have more successful conversations, with a wider range of partners in more environments, thereby increasing their social participation. The programme was viewed as acceptable, despite its intensity, due to the short term commitment and wider benefits for the child. Parents valued the organised structure and individualisation of the programme and inclusion in the therapy process.

 

Conclusion: Families found the intervention acceptable and effective. A definitive trial of its clinical effectiveness is warranted.

AbilityNet Factsheets

ABILITYNET
2019

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AbilityNet’s Factsheets are free to download and provide advice and information about how computers and other digital technologies can help people with a range of conditions and impairments. 

Written by the AbilityNet specialist team of assessors and accessibility consultants they give detailed information on a wide range of assistive technology, services and related organisations. Many give a step by step guide to help you set up your computer and software (assistive technology) to meet your individual requirements.

 

Factsheets include

Creating Accessible Documents

Autism and Computers

Telephones and Mobile Phones

Communication Aids

Disability and Employment

Stroke and Computing

Multiple Sclerosis and Computing

Osteoarthritis and Computing

Vision impairment and Computing

Voice Recognition - An Overview

Hearing Loss and Computing

An introduction to screen readers

Parkinson's and Technology

Dementia and Computing

Dyslexia and Technology

Learning Difficulties and Computing

 

The contacts provided are UK based.

Support persons’ views on remote communication and social media for people with communicative and cognitive disabilities

BUCHHOLZ, Margret
FERM, Ulrika
HOLMGREN, Kristina
November 2018

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Purpose: The purpose of this study was to explore support persons’ views on remote communication for persons with communicative and cognitive disabilities, and on factors enabling self-determination and participation.

 

Materials and methods: Five focus groups with 21 support persons were conducted. They were recorded and transcribed and data were analyzed qualitatively using focus group analysis methodology.

 

Results: The participants experience how remote communication can enable users to have increased control in their lives and how remote communication can enable self-determination and participation. Access to remote communication has a dual effect on safety. There are experiences about communicative rights of the users not being met and there is a need for better access to technology, information, and experts. There is also a need for more competence and coordination among staff and support to the users. Challenges emerge in the support persons’ dedication to the users’ right to communicate.

 

Conclusion: People with communicative and cognitive disabilities need access to remote communication in order to have control over their own lives and to achieve self-determination and participation in society. Support persons carry a large responsibility and can provide valuable insights of users’ communication situation.

Speech and language pathologists’ perceptions and practises of communication partner training to support children’s communication with high-tech speech generating devices

TEGLER, Helena
PLESS, Mia
JOHANSSON, Monica Blom
SONNANDER, Karin
2018

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Purpose: 

This study examined speech and language pathologists’ (SLPs’) perceptions and practices of communication partner training with high-tech speech generating devices (SGDs).

 

Method: 

Fifteen SLPs were recruited throughout Sweden. The SLPs answered a study-specific questionnaire on communication partner training in relation to communication partners to children with severe cerebral palsy and intellectual disability. The results were analysed with descriptive statistics (closed-ended questions, responses on Likert scales) and content analysis (open-ended question) using ICF-CY.

 

Results:

Twelve SLPs completed the survey. Half had no or one training session with communication partners in the last year. One-third never used documents for goal-setting. Half seldom or never taught communication partner strategies. Three quarters only used verbal instructions. The main obstacles were environmental factors.

 

Conclusions

This study contributes valuable knowledge about high-tech SGD interventions targeting communication partners. The high-tech SGD intervention may benefit from goal-setting, extended number of training sessions and a range of instructional approaches.

‘I felt pain. Deep pain…’: Experiences of primary caregivers of stroke survivors with aphasia in a South African township

MASUKU, Khetsiwe P.
MOPHOSHO, Munyane
TSHABALALA, Muziwakhe
2018

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Background: Aphasia is an acquired impairment in language and in the cognitive processes that underlie language. Aphasia affects the quality of life of the person with aphasia (PWA) and his or her families in various ways in diverse contexts and cultures. It is therefore important that speech language therapists understand how different contextual and cultural factors may mediate experiences.


Purpose: The aim of the study was to describe the caregiving experience of female caregivers of PWA residing in Tembisa, a township situated in the east of Johannesburg.


Method: Qualitative, semi-structured interviews were conducted with primary caregivers of PWA. Purposive sampling was used to recruit 14 primary caregivers of PWA who were daughters, daughters-in-law or wives of the PWA. The interviews were conducted in participants’ first language and analysed by the researcher, who is proficient in isiZulu. Data were analysed according to the principles of thematic analysis.


Results: Findings indicated that caregivers are unfamiliar with aphasia and the support available to them. Participants experienced frustration and found communication to be challenging owing to their lack of communication strategies. The participants’ experiences reflected their context-specific experiences, such as feminisation of caregiving, barriers to healthcare, the influence of low health literacy and contextual perspectives on stroke and aphasia.


Conclusions: Contextual factors of caregivers in Tembisa have an influence on the experiences between caregivers and PWA, the feelings of individuals and families and health-seeking behaviours of individuals and families.

Communication rehabilitation in sub-Saharan Africa: The role of speech and language therapists

WYLIE, Karen
MCALLISTER, Lindy
DAVIDSON, Bronwyn
MARSHALL, Julie
2018

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Background: Workforce factors present a significant barrier to the development of rehabilitation services for people with communication disabilities in sub-Saharan Africa (SSA). Exploring how the work of speech and language therapists (SLTs) in the region is organised and delivered can provide insight into existing services, areas for future workforce development and improved rehabilitation access for people with communication disability.


Objectives: This paper describes the employment and service provision patterns and work roles of a sample of SLTs in SSA.


Method: A broad, purpose-designed, mixed-methods survey was designed to collect data from SLTs living in Anglophone countries of SSA. Descriptive statistics and qualitative content analysis were undertaken. This paper reports on a subset of data from the wider survey.


Results: A description of the employment and work roles of the 33 respondents to the survey and characteristics of their service users is presented. SLTs were commonly employed within private and not-for-profit sectors and frequently worked in temporary jobs. SLTs engaged in a range of work roles, including capacity building and training others. Services were provided by SLTs across age ranges, health conditions and settings, with paediatric, urban services commonly reported. Costs for service users and urban-centred services give indications of barriers to service access.


Conclusion: Knowledge of the way in which speech and language therapy services are organised and provided has the potential to shape the development of communication disability rehabilitation in SSA. This research has identified a range of issues requiring consideration as the profession develops and grows.

Services for people with communication disabilities in Uganda: supporting a new speech and language therapy professional

MARSHALL, Julie
WICKENDEN, Mary
2018

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Services for people with communication disability (PWCD), including speech and language therapists (SLTs), are scarce in countries of the global South. A SLT degree programme was established at Makerere University, Uganda, in 2008. In 2011, an innovative project was set up to provide in-service training and mentoring for graduates and staff of the programme. This paper describes the project and its evaluation over three years. Three types of input: direct training, face-to-face individual and group meetings, and remote mentoring, were provided to 26 participants and evaluated using written and verbal methods. The first two types of input were evaluated mainly positively, while remote mentoring received more mixed evaluations. Less positive evaluations were linked to factors including resourcing, cultural perceptions about professional roles and services, work patterns, power/status, engagement, perceptions of help-seeking, community recognition of the needs for services for PWCD. Findings suggest that participatory approaches, flexibility, reflexivity and open discussion with participants around support and work challenges, are important. Power gradients between white Northern ‘experts’ and relatively inexperienced East African SLTs, contributed to some challenges. Structural issues about degree programme structures and statutory bodies, provide lessons about the development of new services and professions in low-income settings. 

 

Disability and the Global South, 2018 Vol.5, No. 1

Human rights of refugee-survivors of sexual and gender-based violence with communication disability

MARSHALL, Julie
BARRETT, Helen
November 2017

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The main aims of this project were to document current knowledge about the intersectionality between sexual and gender-based violence (SGBV), communication disability and refugees, to identify any reported good practice, and to begin to understand and describe the challenges to supporting refugee-survivors of SGBV with communication disability, in Rwanda. The project involved 54 participants, including 50 humanitarian and partner organisation staff and four carers of refugees with communication disabilities, from two locations (camp-based and urban refugees).

 

International Journal of Speech-Language Pathology,  20:1, 44-49,

DOI: 10.1080/17549507.2017.1392608

Communication Disability in Fiji: Community Cultural Beliefs and Attitudes

HOPF, Suzanne C
MCLEOD, Sharynne
MCDONAGH, Sarah H
RAKANACE, Epenisa N
2017

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Purpose: Beliefs about communication disability vary according to the cultural context, and influence people’s attitudes and help-seeking behaviour. Little is known about Fijians with communication disability or the communities in which they live, and specialist services for people with communication disability are yet to be established in Fiji. An understanding of Fijian beliefs about the causes of communication disability and attitudes towards people with communication disability may inform future service development.

 

Method: An interpretivist qualitative research paradigm and the International Classification of Functioning, Disability and Health (ICF) framework informed this project’s design. Scenarios of adults and children with communication disability were presented to 144 participants, randomly sampled across multiple public spaces in two Fiji cities. Thematic analysis of responses to 15 survey questions revealed participant beliefs about the causes and attitudes towards people with communication disability.

 

Results: Three clusters describing perceived causes emerged from the analysis - internal, external, and supernatural. Major clusters across child and adult scenarios were similar; however, response categories within the scenarios differed. Community attitudes to people with communication disability were predominantly negative. These community attitudes influenced individual participants’ beliefs about educational and employment opportunities for Fijians with communication disability.

 

Conclusion: Determination and acknowledgement of individuals’ belief systems informs development of culturally appropriate intervention programmes and health promotion activities.

 

Implications: Speech-language pathologists and other professionals working with Fijian communities should acknowledge community belief systems and develop culturally-specific health promotion activities, assessments, and interventions.

Cardiovascular diseases (CVD) and rehabilitation. Factsheet

HANDICAP INTERNATIONAL
March 2017

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Cardiovascular disease (CVD) refers to conditions that affect the heart and blood vessels. Most commonly this includes coronary heart disease (heart attacks), cerebrovascular disease (stroke) or raised blood pressure (hypertension). A stroke occurs when a blood clot (ischaemia) or a bleed (haemorrhage) disrupts the blood supply to part of the brain, starving that area of oxygen. Stroke is a leading cause of serious long-term disability. Common impairments and activity limitations from cardiovascular diseases are hemiplegia, word forming difficulties and slurring of speech, cognitive function, depression, sensory loss and shortness of breath. Different examples of rehabilitation in the care continuum are given. A case study of stroke in Nepal is provided. 

CBR Workers' Training Needs for People with Communication Disability

YEAP, Choo Er
IBRAHIM, Hasherah
VAN DORT, Sandra
AHMAD, Kartini
YASIN, Md Syahrulikram
2017

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Aims:  In order for speech-language pathologists to work better together with CBR workers, there is a necessity to understand what they perceive as their training needs for people with communication disability (PWCD).

 

Method:  In 2013, a cross-sectional written survey was conducted with 421 Malaysian workers, using convenient sampling and a mixed-method approach. 

 

Results:  In-depth information on training needs from descriptive analysis of quantitative data and content analysis of qualitative data were obtained and discussed. 

 

Conclusion:  This study, although not generalizable, builds up the literature on worker training needs in developing countries, and would be of benefit for speech-language pathologists and worker trainers.

Communication rehabilitation in sub-Saharan Africa: A workforce profile of speech and language therapists

WYLIE, Karen
MCALLISTER, Lindy
DAVIDSON, Bronwyn
MARSHALL, Julie
2016

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Background: There is an urgent global need to strengthen rehabilitation services for people with disabilities. In sub-Saharan Africa, rehabilitation services for people with communication disabilities continue to be underdeveloped. A first step in strengthening services for people with a communication disabilities is to understand the composition and conditions of the current workforce.


Objectives: This research describes a sample of the speech and language therapists (SLTs) working in SSA (excluding South Africa). This study explores the characteristics of this workforce, including their demographics, education, experience and geographical stability.


Method: A mixed-methods survey was used to collect data from SLTs within Anglophone countries of SSA. Completed surveys were received from 33 respondents working in 44 jobs across nine countries. Analysis included descriptive and non-parametric inferential statistics. This study reports on a subset of descriptive and quantitative data from the wider survey.


Results: A background profile of SLTs across the region is presented. Results indicated that the workforce of SLTs comprised a mix of local and international SLTs, with university-level education. Local SLTs were educated both within and outside of Africa, with more recent graduates trained in Africa. These data reflected the local emergence of speech and language therapy training in SSA.


Conclusion: This sample comprised a mix of African and international SLTs, with indications of growing localisation of the workforce. Workforce localisation offers potential advantages of linguistic diversity and stability. Challenges including workforce support and developing culturally and contextually relevant SLT practices are discussed.
 

Early detection of communication delays with the PEDS tools in at-risk South African infants

LINDE, Jeannie van der
SWANEPOEL, De Wet
HANEKOM, Linique
LEMMER, Tasha
SCHOEMAN, Karla
GLASCOE, Frances P
VINCK Bart
2016

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Background: Prevalence of communication delays or disorders is increasing, possibly because of various environmental risk factors. Selection and implementation of effective screening tools are important to detect at-risk infants as early as possible. This study aimed to evaluate the accuracy of the Parents’ Evaluation of Developmental Status (PEDS), PEDS-Developmental Milestones and PEDS tools to detect communication delays in infants (6–12 months) in a South African primary healthcare context.

 

Method: A comparative study design evaluated the accuracy of the PEDS tools to detect communication delays, using an internationally accepted diagnostic assessment tool, the Rossetti Infant-Toddler Language Scale (RITLS). A convenience sample of 201 infants was selected at primary healthcare clinics.

 

Results: Expressive and receptive language sensitivity scores were low across all three screens(ranging between 14% and 44%). The PEDS tools had high sensitivity (71%) and specificity (73%) ratings for the receptive and expressive language and socio-emotional domain in combination.

 

Conclusion: In the sample population, the PEDS tools did not accurately detect receptive and expressive language delays; however, communication delays in general were identified. Future research determining accuracy of the PEDS, PEDS-Developmental Milestones and PEDS tools for children aged 2–5 years in detecting communication delays should be prioritised.

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