Consequences of stroke and aphasia according to the ICF domains: Views of Portuguese people with aphasia, family members and professionals

Abstract

Background: Addressing the long-term consequences of stroke is a top 10 research priority, and understanding the views of different stakeholders is essential in designing appropriate patient-centred multidisciplinary rehabilitation.

Aims: This study reports on the perspectives of 38 individuals who live with or work with aphasia: people with aphasia (PWA), family members (FM) and friends, and speech and language therapists (SLTs), about its consequences in the daily lives of PWA.

Method & Resources: In total, 14 PWA, 14 FM and 10 SLTs participated in the study. All participants were interviewed about the consequences of stroke and aphasia. Small focus groups were used with some participants. In-depth semi-structured interviews were used with other participants. Interviews were carried out in groups or individually in order to accommodate severe aphasic impairments or respondents with fewer years of education. Interviews were video or audio-recorded. Verbal and non-verbal communication was transcribed and analysed qualitatively using content analysis. Data was coded and mapped onto the ICF framework.

Outcomes & Results: All three groups reported consequences in Body Functions and Body Structures, primarily in Mental Functions (Specific Mental Functions and Global Mental Functions) and Neuromusculoskeletal and Movement-Related Functions. Within Specific Mental Functions, PWA emphasised Expression of Oral Language, whereas FM and SLTs emphasised Emotional Functions. Within Global Mental Functions, PWA and FM emphasised Energy and Drive Functions, whereas SLTs emphasised Temperament and Personality Functions. Some consequences were shared between PWA and SLTs (Sensory Functions and Pain, and Functions of the Digestive, Metabolic and Endocrine Systems), whilst others were specific to SLTs alone (Voice and Speech Functions, and Cardiovascular, Haematological, Immunological and Respiratory Systems). All three groups reported consequences in Activities and Participation in Major Life Areas; Community, Social and Civic Life; Interpersonal Interactions and Relationships; Communication; and Mobility. Some consequences were shared by PWA and FM (Domestic Life), and others by FM and SLT (Self Care). Consequences in General Tasks and Demands were only described by SLTs and in Learning and Applying Knowledge by PWA. Both PWA and FM reported a general Loss of Autonomy.

Conclusions: PWA, FM and SLTs reported a considerable range of stroke and aphasia consequences in the daily life of those who live with it. They were concerned to different degrees with language, physical and emotional changes, and impact on communication, mobility, self-care, relationships, leisure and work. Professionals’ practices in Portugal need to be changed in order to consider these findings.

Keywords:

• Aphasia
• Consequences
• ICF
• Family Members
• Clinicians. 

Special thanks go to the people with aphasia and their family and friends who gave their time to take part in the study. This work was developed during the Ph.D. of the first author at the University of Aveiro, Portugal. This work was partially funded by National Funds through FCT—Foundation for Science and Technology, in the context of the project PEst-OE/EEI/UI0127/2014.

Notes

¹ This decision was made in consideration of the larger research study (Matos, 2012), wherein participants needed to comment on translated assessment tools of communication disability and participation, and were thought to respond more with individual support.