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DEVELOPMENT OF TOOLS TO MEASURE SERVICE USER AND CARER SATISFACTION WITH SINGLE SHARED ASSESSMENT
Guidance on Consent : Taking part in this evaluation
Some background Information - The Adults with Incapacity Act
The Adults with Incapacity Act introduced new safeguards to protect individuals' interests and new ways for people to make choices about who will handle their affairs and make decisions for them about their welfare and financial affairs.
" The purpose of the Incapacity Act is to provide for decisions to be made on behalf of adults who lack the capacity to do so themselves because of mental disorder or inability to communicate" ( Explanatory Notes) .
The Act provides a definition of incapacity, for the purposes of the Act :
" 'Incapable' means incapable of a) acting; or b) making decisions; or c) communicating decisions; or d) understanding decisions; or e) retaining the memory of decisions as mentioned in any provisions of this Act, by reason of a mental disorder or of inability to communicate because of physical disability; but a person shall not fall within this definition by reason only of a lack or deficiency in a faculty of communication if that lack or deficiency can be made good by human or mechanical aid ( whether of an interpretive nature or otherwise)."
The Explanatory notes say
"Understanding decisions includes being able to understand or remember information relevant to the decision, including information about the foreseeable consequences of deciding one way or another, or of failing to make a decision altogether."
and that the Act "ensures that all reasonable efforts are made to communicate with the adult in an appropriate way before arriving at a decision on incapacity".
The Principles of the Act, while applying to "any intervention in the affairs of an adult under or in pursuance" of the Act, are helpful with regard to consent to take part in this research, particularly :
Past and present wishes and feelings of the adult must be taken into account in any action taken on their behalf and these ascertained "by any means human or mechanical aid ( etc as above )
Exercising and developing skills - the person must be encouraged to do as much as he or she is capable of.
Consent and evaluation
The principles and spirit of the Act are relevant in relation to
research interviews/questionnaires on behalf of the person
research and to co-sign the consent form.
The starting point for this evaluation is that potential involvement in the evaluation is assumed for everyone who has had a Single Shared Assessment.
Giving consent means giving 'informed consent', i.e. the person needs to understand
what the research is about
what he or she is being asked to do
what the foreseeable implications are for them.
The Information Leaflet contains the relevant information. It will often need to be explained and/or interpreted in ways which suit the individual.
Giving consent
The majority of people will give consent themselves. They will be asked to go through and sign Consent Form 1.
In some circumstances it will be difficult to establish whether someone fully understands the implications of being involved in the research. Their carer or person close to them will be asked to give their view on whether she or he could be involved and whether, on the basis of their known preferences and wishes - present and past, being involved would be OK for them. The person themselves will be asked to go through and sign Consent Form 2 and their carer or other (support) person to co-sign it.
Where it is clear that the person cannot give informed consent and that involvement for them would be intrusive, stressful, and/or of no personal benefit, their carer or other person closest to them would be asked to participate on their behalf and go through and sign Consent Form 3. This will help to ensure that although the person themselves is not directly involved in the research, an account of their experience of Single Shared assessment is included.
When consent forms 1 or 2 are used and where a carer was present at the assessment, they will be asked to sign to consent form 1a provided the service user agrees to the carer's involvement.
When consent form 3 is used, the carer is also asked to sign consent form 1a.
Asking for consent
It is essential that people make the choice about whether or not to take part without
any pressure being placed upon them
feeling any sense of obligation ( for example, to the person inviting them to
participate or to their service provider)
receive could be affected by their decision.
Possible wording for verbal explanations ( e.g. by assessors, key workers, social workers)
I've been asked to ask you whether you would be willing to be involved in an evaluation about this kind of assessment. [
When applicable: We'd also like to ask your carer to take part if you agree].
The evaluation is for our local council and health service and the Scottish Executive. It will help them find out whether this new kind of assessment for health and community care services, the Single Shared Assessment [
use local term for SSA ] is working properly for people who have them.
Taking part would involve you
[and your carer] answering some questions about your experience of the assessment either by filling in a questionnaire or by having an interview or discussion with a member of the research team.
It is important that you know that :
It is your choice and your decision whether or not to take part.
If you decide not to take part this will not affect your assessment
in any way at all.
It will not affect the support or services which you have now or may have
in any way.
If you do decide to take part, you can change your mind and withdraw at any time.
If you decide to withdraw, this will not affect your assessment or the support or services which you have now or may have
in any way.
If the person indicates that they are not willing to take part, the request/discussion should be ended promptly.
If the person is willing to take part, the next stage is completion of a consent form.
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