Samenvatting

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.