The problems faced by informal carers to people with aphasia after stroke: A literature review

Abstract

Background: In addition to other stroke related impairments, up to 12% of those who survive stroke have ongoing problems with aphasia. Research suggests that informal carers to those with aphasia after stroke experience a greater overall burden of care than those who care for stroke survivors without aphasia. One of the keys to understanding this is a clear appreciation of the problems faced by carers of stroke survivors with aphasia.

Aims: Via review of the literature to identify the problems faced by informal carers to those having aphasia after stroke.

Methods & procedures: Studies listed in AMED, CINAHL, EMBASE, MEDLINE, and PsycINFO databases were searched for articles published up until 10^th June 2012, using specified search terms. Reference lists of papers obtained were hand-searched. The studies were rated according to the appropriateness of the study design and the quality with which the research was executed. The results of studies of higher quality were given greater weighting.

Outcomes & Results: Fourteen studies were found that complied with the study criteria. The majority of research was cross-sectional. There was a balance of qualitative and quantitative studies. There were methodological problems with all of the studies. Seven studies were rated as low quality and the remainder were rated as moderate quality. It was established that there is reasonable evidence to suggest that informal carers to people with aphasia after stroke commonly experience problems in the following areas: role changes/new responsibilities, difficulties with social and leisure activities, communication difficulties with the stroke survivor, employment and financial problems, problems in dealing with health professionals, relationship difficulties with the stroke survivor, difficulties in family relationships, lack of support or respite, managing difficult behaviours in the stroke survivor, physical health problems/fatigue, and emotional health problems.

Conclusions: This paper provides an update and improvement upon a previous review of the literature in this subject area. There is a lack of longitudinal research and therefore little is known about how the problems experienced by informal carers of stroke survivors with aphasia change over time. Carer gender and carers’ perception of the self-care deficits of the stroke survivor emerge as potentially significant covariables requiring further investigation. Clinical implications of the findings and limitations are discussed.

Keywords:

• Caregivers
• Stroke
• Aphasia

Acknowledgments

The authors thank Dr. Tony Brown and Dr. Ineke Pit ten Cate.

Notes

¹A liberal view of the method of determining aphasia was taken in order to include all the studies that were relevant. The majority of studies stated that aphasia was confirmed diagnostically, but there were others in which limited information was given about how aphasia was determined. In such cases however there were systems in place that meant the stroke survivor was likely to be suffering from aphasia, for example, recruitment took place through aphasia support organisations or through local speech therapists.