Ways to improve communication and support in healthcare centres according to people with aphasia and their relatives: a Dutch perspective

Authors Maren van Rijssen, Jytte Isaksen, Dorien Vandenborre, Marloes Veldkamp, Els Bryon, Lianne Remijn, Anne Visser‑Meily, Ellen Gerrits, Lizet van Ewijk
Published in Aphasiology
Publication date 2021
Research groups Speech and Language Therapy: Participation through communication
Type Article

Summary

Background There is an increasing amount of research that investigates the needs and wishes of people with aphasia and their relatives with regards to improving the accessibility of communication with healthcare professionals (HCP). An important way to improve this is by training HCP to use supportive conversation techniques and tools. Objectives This study aimed to inform the development of such a training, by adding to previous findings in the literature regarding the experiences, needs and wishes of people with aphasia and their relatives. We were interested in their experiences with the accessibility of communication and support from HCP and how they believed this can be improved. Methods An exploratory qualitative research design was chosen. Data was collected through qualitative semi-structured interviews with 20 people with aphasia and 12 relatives. The time post stroke ranged from 3 months to 41 years. Results Four themes described the data. According to people with aphasia and relatives (1) information transfer in healthcare settings and (2) the use of supported conversation techniques by HCP are inadequate, (3) there is a lack of shared decision-making in healthcare settings, and (4) support, guidance, counseling and education is mainly targeted at the person with aphasia. Conclusions People with aphasia and relatives reported a variety of positive and negative experiences in all themes. Even though guidelines and interventions have been developed to improve healthcare for people with aphasia and their relatives, we found that people still encounter substantial challenges in access to- and provision of information, shared decision-making, support and communication with HCP. The findings in this study provide some important recommendations for improvement, including the improvement of transfer of information, shared decision-making and individual support for the relatives.

On this publication contributed

  • Maren van Rijssen | Researcher | Research group Speech and Language Therapy: Participation through communication
    Maren van Rijssen
    • Researcher
    • Research group: Speech and Language Therapy: Participation through communication
  • Marloes Veldkamp | Researcher | Research group Speech and Language Therapy: Participation through communication
    Marloes Veldkamp
    • Researcher
    • Research group: Speech and Language Therapy: Participation through communication
  • Ellen Gerrits | Professor | Research group Speech and Language Therapy: Participation through communication
    Ellen Gerrits
    • Professor
    • Research group: Speech and Language Therapy: Participation through communication
  • Lizet van Ewijk | Researcher | Research group Speech and Language Therapy: Participation through communication
    Lizet van Ewijk
    • Researcher
    • Research group: Speech and Language Therapy: Participation through communication

Language English
Published in Aphasiology
Year and volume 37 1
Key words aphasia, health communication, patient experiences, qualitative research
Digital Object Identifier 10.1080/02687038.2021.1988505
Page range 69-82

Maren van Rijssen

Maren van Rijssen | Researcher | Research group Speech and Language Therapy: Participation through communication

Maren van Rijssen

  • Researcher
  • Research group: Speech and Language Therapy: Participation through communication