People with aphasia share their views on self-management and the role of technology to support self-management of aphasia

Abstract

Purpose

Self-management can lead to increased self-efficacy and improved quality of life for individuals with chronic conditions; however, there is little research exploring how self-management approaches can be used for chronic communication disorders, such as aphasia. Modifications to self-management approaches would be required to accommodate for aphasia; therefore, the input of people with aphasia (PwA) should be sought. The aims of the present study were: (1) To investigate and document the experiences and perspectives of PwA regarding self-management; (2) To explore how technology can be used to support aphasia self-management.

Materials and methods

In-depth, semi-structured interviews were conducted with 26 PwA living in Australia. Qualitative content analysis was used to analyse interview data.

Results

Analysis resulted in six themes: (1) In self-management, PwA take control of life with aphasia and assume responsibility for engaging in opportunities to improve overall communication; (2) Community aphasia groups are important enablers of self-management because they facilitate peer support; (3) Communication partners (CPs) provide multifaceted support in aphasia self-management; (4) SLPs provide integrated support and coordination in aphasia self-management; (5) Technology supports PwA to self-manage speech therapy and communication in daily life; (6) Psychological and physical health issues and societal factors may impact aphasia self-management abilities.

Conclusion

From the perspective of PwA, aphasia self-management involves enhancing skills enabling communication and life participation. PwA are central to aphasia self-management, with support provided by CPs, peers, and SLPs. Technology has a range of applications in aphasia self-management. PwA identified potential personal and contextual barriers that may impact self-management.

IMPLICATIONS FOR REHABILITATION

• For people with aphasia, engaging in conversation and social interaction are primary means of managing/improving communicative life participation; therefore, this should be a key focus of aphasia self-management programs.

• Aphasia self-management approaches should maximise the use of available support and provide tailored information, education, and training in the area of self-management to key stakeholders (people with aphasia, communication partners, and speech-language pathologists).

• People with aphasia should be supported to use technology for aphasia self-management, encompassing communication specific and daily life use.

• People with aphasia should be heavily involved in the development of structured aphasia self-management approaches.

Keywords:

• Aphasia
• self-management
• speech-language pathology
• rehabilitation
• technology

Acknowledgements

We gratefully acknowledge the efforts of our participants who took part in this study and allowed this research to be possible.

Disclosure statement

The authors report no conflicts of interest.

Additional information

Funding

This work was supported by a Speech Pathology Australia Higher Degree Research Grant.