Information, support and training needs of relatives of people with aphasia: Evidence from the literature

Abstract

Background: Aphasia has an impact beyond the person with aphasia; relatives of people with aphasia are affected by communication difficulties and are service users in their own right, requiring information, support, and training. Research studies have consulted relatives of people with aphasia, but the evidence is complex and widely dispersed in the literature; this makes it difficult to determine what the needs of relatives of people with aphasia are, and how best to meet them. There is also evidence of a gap between perceived needs and current service provision.

Aims: The aim of this review is to provide a synthesis, from the literature, of relatives’ views about their own intervention needs in relation to acquired aphasia, in terms of both content and timing.

Main Contribution: A literature search identified articles which contained relatives’ views about their own need for information, support, or training. Recommendations emerging within individual studies were clustered, focusing on the type and timing of intervention. The synthesis of studies provides a framework in which service users’ recommendations for interventions for relatives of people with aphasia can be readily accessed, making an evidence-based resource for research and clinical applications. The outcome of the review also supports service delivery to relatives, by enhancing awareness and anticipation of their needs, and by validating best use of resources. In addition, the framework of data has clinical and research applications as the basis for dynamic and flexible tools to audit service provision and consider quality of care in this field.

Conclusions: The review acknowledges the value of seeking service user opinion on their needs and service provision. It highlights the specific needs of relatives of people with aphasia. The need for factual information provided proactively in a flexible and supportive manner predominated, particularly in the initial period following the stroke. The need for ongoing psychosocial support over the long term was apparent. The perceived benefits of training in supported conversation skills were more varied. It is challenging to synthesise such a diverse literature, but the synthesis could support service delivery to families of people with aphasia, by allowing services to consider how they are meeting the needs that relatives have identified.

Keywords:

• Carer
• Audit
• Care quality
• Carer experience
• Service user

We wish to thank Anne Whitworth for her support and encouragement.

Notes

¹ The audit tool developed within the Hilton and Leenhouts study is available at http://research.ncl.ac.uk/aphasia/resources.html. The framework is structured with sufficient detail to facilitate the addition of new data or to focus on an aspect in more depth, whether longitudinally or at a stage of the care pathway.