Coping with caring for a person with aphasia.

• What carers do to cope with caring for a person with aphasia.
• How these coping actions link with good and difficult parts of daily life.
• Whether a general coping questionnaire was useful for this group.

It used two types of information: A questionnaire gave numbers, interviews gave personal stories.

• The most common way of coping was to try and control their feelings, the next most common was making a plan of action, and the next most common was to find positive meaning and seek support.
• Avoiding the situation was the least used way of coping.
• Six carers also took part in detailed interviews.
• Carers described frustration, stress, worry, sadness, poor sleep, less energy and less time for themselves.
• They also described pride, appreciation, personal growth and satisfaction when the person with aphasia became more independent.
• Helpful actions included making routines, asking for help, accepting what could not be changed and taking a break.
• Some carers used actions they felt were less helpful. These included emotional eating, staying up late, scrolling social media, going to the pub or playing poker machines.
• Three messages appeared in both parts of the study: carers often kept feelings to themselves, tried to see positive meaning, and needed time alone.

• Aphasia changes communication for the person and their family.
• Carers can have poorer health, wellbeing and quality of life.
• There was little research about coping that was specific to carers of people with aphasia.
• Better information may help services give more useful support.

• There is no single best way for carers to cope in every situation.
• Planning, asking for support, acceptance, and finding positive meaning may help some carers.
• Time for rest and enjoyable activity is important.
• Health workers should include the whole family and speak directly with the person with aphasia.
• Workplaces and support systems can help through flexible arrangements.

Eleven carers completed a survey with 66 questions about ways of coping.

The questionnaire asked how often they used different ways of coping.

Six carers then completed interviews. The researchers used prepared questions and also let carers explain their experiences freely. Interviews lasted about 72 minutes on average.

Three interviews were in person. Three used Zoom or FaceTime.

The researchers used a framework to organise information about health and daily life.

They also looked for repeated themes across the interviews.

A carer with long experience of aphasia helped design the study.

Not applicable - this study did not test a treatment. It explored carers' experiences and coping actions.

• Caring can affect health, work, money, relationships and social life.
• Coping means the thoughts and actions a person uses when a situation feels difficult.

The study did not give a medicine or treatment, so there were no treatment risks.

Questions about caring could cause tiredness or uncomfortable feelings.

Interview participants gave written consent.

The paper says the research team planned where to refer carers if they needed help.

People had to be 18 years or older.

They had to be an informal carer for a person with aphasia.

The aphasia could have any cause.

Participants were recruited through aphasia support groups in Adelaide and Canberra.

Eleven carers completed the questionnaire: seven women and four men.

Their average age was about 69 years. Ages ranged from 33 to 85 years.

Ten were a spouse or partner. One was an adult child.

All lived with the person with aphasia.

The cause of aphasia was stroke for nine people, traumatic brain injury for one person and viral encephalitis for one person.

Time since aphasia began ranged from about seven months to almost 19 years.

Six carers, four women and two men, also took part in interviews.

The questionnaire gave a standard way to compare types of coping.

The interviews gave richer details about real life caring for a person with aphasia.

Using both methods helped the team see where the findings agreed.

A health and daily life framework helped the team organise information about health, activities, relationships and the person's surroundings.

Participants were recruited between October and December 2023. The paper was received by the journal on 2 July 2024 and accepted on 12 July 2026.

The study took place in Australia. People came from aphasia support groups in Adelaide and Canberra. The team worked at Adelaide University, and Aphasia SA, a South Australian aphasia organization.

A University of South Australia Seed Grant paid for the research. The grant was given to Professor Maria Kambanaros. The authors said they had no conflict of interest.

• The study was small. It could not test which coping actions cause better or worse outcomes.
• Recruiting from a support organisation may have missed carers who are isolated or have less support.
• The sample did not represent the full range of cultures and social backgrounds.
• A general coping questionnaire may miss communication-specific coping actions.
• Some interview experiences were about the whole stroke or brain injury, not aphasia alone.

• Strength: the study used two methods. A carer also helped to design the study.
• Strength: one carer checked how the team understood their interview. The team also checked the findings together.
• Strength: the team looked for uncommon experiences as well as common ones.
• Limit: only 11 carers completed the questionnaire and only six were interviewed.
• Limit: People came from one aphasia support organisation. They may have more support or different coping skills than other carers.
• Limit: The sample had limited cultural diversity.
• Limit: Some comments may relate to stroke or brain injury, not only aphasia.

• Repeat the research with more carers and more diverse communities.
• Develop and test aphasia-specific ways to measure coping.
• Follow carers over time to learn which actions link with long-term wellbeing.
• Test support that combines information, emotional support, communication skills and practical coping skills.
• Create clear local guides showing carers where to get aphasia-specific help.

By contacting the first author, Georgia Thomas g.thomas at adelaide.edu.au