Family members’ experiences and preferences for receiving aphasia information during early phases in the continuum of care

Abstract

Purpose: This study aimed to explore family members’ experiences and preferences for receiving aphasia information during the early phases of post-stroke care.

Method: Sixty-five family members completed an online survey structured according to five phases for caregiver support. The majority of participants were female (73.8%, n = 48) and spouses/partners (81.5%, n = 53) to a family member with aphasia. The quantitative data were analysed using descriptive statistics. The qualitative data were analysed using inductive content analysis.

Result: Experiences: The majority of family members (≥50%) did not recall receiving aphasia information in four of the five phases and were not completely satisfied with information received in any phase. Preferences: Only three family members (4.6%) reported not wanting aphasia information and this pertained to the first days of care. Family members considered it useful to receive aphasia information in a written modality and via conversations with health professionals across all five phases. Family members identified difficulties obtaining aphasia information, including health professionals providing limited or inadequate information, not being aware of the term aphasia, and difficulties accessing services across care phases.

Conclusion: Findings provide insight into how health professionals can better support the information needs of family members living with aphasia.

Keywords:

• aphasia information
• family members
• phases of care

Acknowledgements

The authors would like to acknowledge and thank the family members who participated in this study. Ethical approval (project number 2009001850) was obtained from the Medical Research Ethics Committee of The University of Queensland in accordance with National Health and Medical Research Council guidelines.

Declaration of interest

The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.

Supplemental information

Supplemental data for this article can be accessed at https://doi.org/10.1080/17549507.2019.1651396.