Act NoW Study

Question 0

What is the research user group (RUG)?

Answer 0

Service user group all with dysarthria/aphasia following a stroke recruited to assist and guide research

Question 1

What is the aim of user involvement in the Act NoW study?

Answer 1

Traditionally people with aphasia have been excluded from research due to their communication difficulties.

Think that although it is challenging it is not impossible

Use patient involvement so they ensure to reach all the relevant target groups

Question 2

How do the research user group help with research?

Answer 2

Regularly meet to act as advisors to research (what type of input is this?)

Through group discussion and role play the RUG helped develop qualitative methods that are accessible to interviewees with a range of communication deficits following a stroke (what involvement is this?)

They have also helped recruit staff and have trained staff (what involvement is this?)

Question 3

What type of involvement do the patients have in the Act NoW study?

Answer 3

Young et al (2007):

Participate in all stages of the design and implementation of the trial to ensure that the evidence in relevant to the needs of decision makers and the target population

Question 4

What are the benefits of including service users in research?

Answer 4

Young et al (2007):

Intending to carry out research ‘with people’ rather than research done to people will contribute to validity of research. Researchers must seek to redress the balance of power and involve the perspectives, experiences, and knowledge of those whom the research is about

For the users involved, there can be improvements in the social role and political status: can enable voices to be heard and to feel more visible. But more radically, can challenge socio-economic and political structures that serve to contain people’s potential

Users have knowledge, and their knowledge is of value and significance

Question 5

What are the principles underpinning user involvement?

Answer 5

Researchers who facilitate involvement hold positions of power. They can seek to redress the balance of power through user involvement

Seeking to empower service users

Promoting partnership

Respect

Confidentiality

Equality