Information needs for carers following a family member’s right hemisphere stroke

ABSTRACT

Background

Previous studies explored information needs for carers of persons with aphasia; however, there is minimal research on information needs for carers of people with right hemisphere disorder (RHD). Carers have an important role in rehabilitation and long-term quality of life of a person with RHD. This study explores the information needs for carers throughout different periods of rehabilitation following a family member’s right hemisphere stroke.

Methods/Procedures

Four participants completed online surveys and a semi-structured phone interview. The interviews were transribed and analysed for emerging themes.

Results

Analysis revealed four themes in the onset phase including barriers to information, right versus left brain function, recovery timeline and recommendations, and information about symptoms. Three themes emerged in the rehabilitation phase including detailed impairment information, general and specific treatment information, and specificity of timeline and recommendations. The chronic phase contained five themes consisting of information on supports for carers and patients, impairment specific information, treatment and treatment options, compensatory strategies and home practice, and hope

Conclusions

Results suggest the importance of considering the type of information, how this information varies based on RHD, and at what point carers want to receive this information may improve the delivery of information from medical professionals to carers through the phases of recovery.

KEYWORDS:

• Right hemisphere disorder
• family information needs
• carer information needs

Acknowledgments

The authors would like to acknowledge the contributions of the participants who provided candid glimpses into their experiences to support this project. Additionally, we thank Callie Schweizer for her assistance with data collection, and Caterina Staltari and Erica Biedler for their guidance on the project.

Disclosure statement

No interests to report.

Supplementary material

Supplemental data for this article can be accessed here.

Notes

1. Due to the severity of his condition, Cheryl’s son required a high level of care for an extended period of time. Due to the multiple levels of care, Cheryl approximated his stay in care facilities other than home for greater than 365 days.