What do people with aphasia want?

Return to pre-stroke life

• Most participants expressed their desire to be normal again and to escape their current situation and return home to the security of their old life (e.g. Just to be normal and enjoy life).
• The main priority for participants was to be rid of the consequences of the stroke (e.g., the most important thing was to recover from it).
• For some participants, this dominated the early period but appeared to change as they had to accept the reality of chronic disability; for others, the goal of a return to normality persisted.

Communication

• All participants with aphasia naturally spoke of the importance of recovering their communicative function.
• Participants described intense feelings of frustration, hopelessness, isolation, and depression at not being able to talk.
• Many participants stressed that the aphasia was often of higher priority to them than their physical impairments (e.g. [Aphasia] changes your life as much as your bad leg. MORE), which contrasted with health care systems’ focus on physical recovery (e.g. They seemed to be with legs and arms but nothing with [points to mouth]).
• Participants spoke about the range of their communication needs (e.g. communication for basic needs as well as communication to express their opinions (e.g. No. Needs, yes, but talk... my [points to head], I want to talk is politics and religion).
• Participants spoke about the need for communication rehabilitation to be connected to real life (e.g. I wanted to know things, not talk about whatever I’ve done in the past... What’s happening out in the house [gestures outside], what goes on in the world).
• Participants often mentioned specific words or names they wanted to say in real life (e.g. to say her child’s name; things [words]...what I needed after the speech pathologist left [the ward]). They also spoke about how communication gave them confidence.

Information

• One of the most commonly reported goals was that of obtaining information.
• Several participants reported that they were apparently not told by their therapists, particularly in the early weeks or months, of the term used to describe their communication difficulty, and if the word "aphasia" was mentioned, it was rarely explained clearly. Even if they were told, their perception was that they were not, a finding that has significant implications for clinicians.
• Participants wanted information about aphasia and stroke for themselves and their family (e.g. Once you've got a name for something, it's like you've got half the problem sorted. You can chase things and you can do things. You mightn't be able to cure it and everything else but you can understand it more).
• Participants wanted information about: their prognosis, what to expect at different stages of rehabilitation, information about aphasia and stroke to access services and to explain their difficulties to friends or people in the community.
• In addition, having information allowed participants to start taking control and to participate in decisions about their own therapy and their own rehabilitation.
• Some participants also wanted more information about their therapy (e.g. She [outpatient speech pathologist] never had a plan... .What are your [the therapist's] goals? Never have any...An hour...This thisthisthis. "Time's up. You're finished"... [therapist] may have had goals, but I didn't see them... Know the goals help you relate to the subjects).

Speech therapy and other health services

• Most participants wanted speech therapy that met their needs at different stages of recovery, that was relevant to their life (e.g. I want to read, yes, yes but there I read, but they take those away and say "Do this" [gestures writing]. I threw it away. I threw it away, because it was so silly), that was more frequent (e.g. If I could have spoken and did 12 hours 12 hours a day I would have been for the whole 12 hours doing the whole lot), and that continued for longer.
• Participants wanted positive relationships and interactions with their speech therapists and other health service providers (e.g. it was very ...hard for me and we didn’t get on so I said well ..."I’m not going back there because it’s useless").

Control and independence

• Goals in this category included wanting to get out of an institution to their home (e.g. Coming home from hospital... that was one of the main things always on my mind), or wanting to do things by or for themselves (e.g. using the phone, getting their driving licence back, getting back to bible study classes, learning to use the buses).
• Some participants expressed frustration at not being a part of the decision making in their care, seeking information from sources other than health professionals. Some took on home practice as a form of taking control and continued it for years after discharge.

Dignity and respect

• Many participants reported a feeling of being disempowered by their aphasia.
• Participants wanted respect, stating that they were competent people, despite their communication difficulties (e.g. Upstairs, very smart. Downstairs, crap [pointing to his head and then his mouth]; It was really important that other people know that I wasn’t stupid and that I was the same person that I was before).
• Participants sought respect by highlighting their pre-morbid skills and accomplishments or the progress they had made (e.g. I can still, I know how to fixing a bike).

Social, leisure, and work

• It was very common for participants to have social goals, including to be able to converse with family, chat with friends, read a night time story to the grandchildren, and feel comfortable in a crowd (e.g. It’s communication with other people...in the sense that...just to be talking to a neighbour).
• Social goals were characteristic of later stages of recovery (i.e., once people were home), but were also featured throughout participant's rehabilitation.
• Social ease and acceptance were very important goals.
• Participants were upset by boredom and isolation.
• Younger participants were particularly aware of the loss of work and career and often held deep, strong desires to return to some employment. These participants often became volunteers if they could not achieve their work goals.

Altruism and contribution to society

• A few participants spoke of goals related to improving the lives of others, including other people with aphasia (e.g. I was a mentor... to people who had just had strokes... and that’s the sort of thing I’d like to do).
• Some participants devoted time to helping speech pathology students by being available for clinical placements, some volunteered in groups, and some wanted to increase people’s awareness of aphasia.

Physical function and health

• For many participants, physical recovery and general health goals were closely woven into the success of other kinds of goals.
• Many participants knew it was their physical improvements that would determine whether or not they could manage at home, and this often dominated rehabilitation.
• Once home, participant's goals often included physical health, going for walks, keeping fit, going to the gym, and managing their weight, diabetes, or epilepsy (e.g. To get... the use of my hands and legs back).