How we did it

Background research

We conducted a scoping exercise, looking at information already in existence, including publications by the Scottish Government, Alzheimer and ENABLE Scotland and established that nothing had previously been published looking solely at Part 5 of the act and aimed at carers. We also conducted some desk research and conducted face to face interviews with key stakeholders to identify the main principles of the act that should be included.

The main stakeholders included:

  • Alzheimer Scotland
  • Mental Welfare Commission for Scotland
  • Office of the Public Guardian (Scotland)
  • Scottish Government Health Directorates & Justice Department
  • psychiatric staff
  • other health professionals
  • BMA

Consultation with stakeholders

Having produced a first draft of the leaflet we conducted a consultation with approximately forty professional stakeholders. We sent out a draft of the leaflet along with a questionnaire asking:

  • about awareness of existing information
  • if  the information in the leaflet was useful
  • if it met the needs of carers
  • if it was accurate
  • if any issues had been missed
  • if the contact organisations were the most appropriate
  • if the layout was good
  • if the language was easy to understand
  • if the order and structure was logical
  • which formats would be most useful.

User-testing with carers

We used the feedback from professional stakeholders to redraft the leaflet in order to test it with carers. We commissioned a research consultant to hold five focus groups with carers. We held five groups with 34 participants in total. The carers ranged in age from 11 to 72 and came from the following NHS board areas: Borders, Dumfries and Galloway, Fife, Forth Valley and Greater Glasgow and Clyde. You can read the user-testing report here.

Consultation findings

The feedback we received from the user testing showed that:

  • Many carers were unfamiliar with the detail of the Act and the rights that it conferred on them. They expected their wishes to be automatically overridden by health professionals. They welcomed the leaflet for setting out their rights.
  • Other carers found the layout of the leaflet confusing and thought that the most important information for carers was not prominent enough.
  • The use of bullets and short sentences was popular.
  • Some carers found the leaflet useful as it described the kind of situations that they recognised and had encountered themselves.

Page last edited: 01 February 2011

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