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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.

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.

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.

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