Developing person-centred goal setting resources with and for people with aphasia: a multi-phase qualitative study

ABSTRACT

Introduction

Stroke patients with aphasia are often excluded from person-centred goal setting as part of their clinical care, despite a recommendation for person-centred goal setting in national clinical guidelines.

Aim

To develop and field test an aphasia supplement to a person-centred goal setting package for stroke to better meet the needs of patients with aphasia.

Methods

A multi-phase, qualitative study design was employed building on prior work in a non-aphasia stroke population. Initial materials, including clinician training, were developed into an aphasia goal setting supplement with input from an expert working group. In phase one, feedback was sought from consumers with aphasia (n=5) on the layout and format of the patient-facing components. In phase two, six clinicians from one Australian healthcare network (occupational therapy: n=2, physiotherapy: n=1 and speech pathology: n=3) were observed using the goal setting package with eight inpatients with aphasia (2 mild, 3 moderate, 3 severe). In phase three, post field testing feedback was sought from clinicians (n=5) and patients with aphasia (n=3). Content analysis of interview data was carried out.

Results

The consumer feedback session in phase one indicated that the supplement layout was helpful for including people with aphasia to participate actively in person-centred goal setting. Adaptations were made for the aphasia supplement including language, graphic, and format changes based on the feedback. During the field testing in phase two, 18 person-centred goals were set with eight patients with aphasia (median two goals) and included: secondary prevention (8%), functional recovery (31%), community participation (28%), everyday activities (28%), and environment (6%). Based on observations by members of the research team during field testing, clinicians across the multidisciplinary team were able to facilitate goal setting effectively. In phase three, clinicians and patients reported the supplement was useful to facilitate person-centred goal setting for people with aphasia. Conclusion: The aphasia supplement for the goal setting package was appropriate in meeting the needs of patients with aphasia after stroke and encouraged person-centred goal setting across multiple recovery areas.

Conclusion

The aphasia supplement for the goal setting package was appropriate in meeting the needs of patients with aphasia after stroke and encouraged person-centred goal setting across multiple recovery areas..

KEYWORDS:

• aphasia
• stroke
• goal setting
• person-centred
• interdisciplinary

Acknowledgments

We thank Renee Stolwyk and Kelsie Herrmann for their assistance in the pre-study working group. We also acknowledge Peninsula Health for supporting the field testing component of the study.

Disclosure statement

The authors declare that there is no conflict of interest.

Additional information

Funding

This study was supported by a National Health and Medical Research Council (NHMRC) clinical stipend from the Centre for Research Excellence Stroke Rehabilitation and Recovery.The following authors received research fellowship support from the NHMRC: DAC (1154273) and NEA (1072053). The following authors received fellowship support from the National Heart Foundation of Australia: NAL (102055); National Health and Medical Research Council [1072053 (NEA), 1154273 (DAC), Clinical stipend from the Centre for Research Excellence 1077898];.