Participant Information
You are invited to take part in a study. To help you decide
whether or not you want to take part, please take time to read this
information sheet and discuss it with others if you like. If you
think you might be interested in taking part, please read on!
What is the purpose of the study?
The purpose of the study is to find out what day care and
rehabilitation services people with long-term health conditions in
Northumberland want, and how they would like these services to be
delivered.
Conducting this study is of particular relevance at this current
time: "Direct payments" or "personal budgets" have given people a
much greater say in what services they receive. At the same time,
the fundamental government-led changes to the funding of health and
social care have led to cut-backs by social services and care
trusts all over the country. This means that organisations
providing day care and rehabilitation for people with long-term
health conditions have to make their services cheaper and find new
ways of delivering them.
We think that this offers an important opportunity. There is no
point in continuing to deliver services which do not fully meet the
needs of the people they are intended for. However, if we know what
service-users really want out of their day care and/or
rehabilitation, it will be possible to develop day care and
rehabilitation services that are meaningful, stimulating, and
enhance the well-being of all involved.
One novel way of providing day care and rehabilitation services is
to bring people with long-term health condition to a
farm/land-based environment and help them engage in activities such
as gardening, looking after animals, and crafts. This is widely
called "Green Rehabilitation" and widely established and successful
in other countries, and is gradually becoming more available in the
UK.
Northumberland Care Trust and County Council acknowledge that
Green Rehabilitation may have a lot to offer to people with
long-term health conditions in Northumberland. We have been given
funding by DEFRA and the EU to help us find out whether and how
Green Rehabilitation services can be developed here, that meet the
needs and aspirations of the people they are intended for.
Why have I been invited?
You have a long-term health condition and live in, or close to,
Northumberland. This makes you a key stakeholder in the development
of new day care and rehabilitation services in this region.
The other reason we want to hear from you is that we strongly
believe that services should not be developed for, but with the
people they are intended for. Nobody knows better than yourself
what you want out of day care and/or rehabilitation and how you'd
like these services to be delivered. You're the expert, and we are
keen to learn from you.
By the way, you don't have to be an expert in farming or
gardening, or anything like that. You might never even have
considered that such an environment may be a basis for care or
rehabilitation. Either way, if you feel you can contribute and are
interested in taking part, we'd like you to be part of this
project.
Do I have to take part?
No. It is entirely up to you whether you choose to take part in
this study or not.
Your participation in this study is entirely voluntary, and even
if you say you want to take part, and later change your mind, you
can withdraw from the study at any time without giving a reason.
Withdrawing will have no impact on your current or future
healthcare provision.
What will happen if I take part?
If you'd like to be involved in this project, you will be asked to
take part in a group discussion with other people with the same or
a similar health condition as your own. This would take no more
than an hour and a half of your time; you can bring a family
member, carer, or friend if you like.
At the time of the group discussion, the researcher will give all
participants the opportunity to ask any further questions they
might have. Then you will be asked to sign a form to confirm that
you would like to take part in the study (this is an ethics
requirement). The researcher will then put some questions to the
group, and the group discussion will be recorded on a digital
device, so that we have a record of participants' view and
suggestions.
We will provide tea, coffee and biscuits and make sure that
everybody feels at ease.
How long will the study last for?
You will only be required to come to one group discussion, but the
entire study will last about five months. We will conduct around 15
group discussions and record and analyse the views and wishes of a
range of people with long-term health conditions.
What are the possible benefits of taking
part?
We are not in a position to offer any financial rewards for you to
take part. However, if when travelling to your focus group you are
required to make a journey you would not otherwise have made (i.e.
the focus group is held on an alternative day or at alternative
location to a group you already attend), we will refund any
reasonable travel expenses you incur.
We cannot promise that we or somebody else in Northumberland will
provide the exact "dream service" you outlined for us. But we do
promise to take serious all that you say and suggest. We will
report what you shared with us, to day care and rehabilitation
service providers in Northumberland, including the County
Council/social services and Northumberland Care Trust.
As a result of your input, you may just find that there will be
services on offer that meet the needs and aspirations you shared
with us. In this way, the benefit of taking part is the chance to
influence what services will be delivered and how. I hope this
makes you as excited about this as we are.
Will my taking part in this project be kept
confidential?
Yes, nothing you say will ever be reported together with your
name. In fact, we only require your name and contact details to
allow us to contact you to arrange a convenient time and place for
you to attend, should you decide to take part in the study. All the
information we collect will be anonymised after the group
discussion, and kept on a password secure computer. No information
given
during the study will be traceable back to your name or passed to
anyone outside of the research team.
What will happen to the information that is
collected?
The group discussions will be recorded and written up as a word
document. At this point all participants' names and any other
information that would allow them to be identified will be removed.
The document will be kept on a password-protected computer. The
information collected in this project will be destroyed after the
completion of the study.
However, to make sure what you shared is being heard by the
relevant people, it will be written up as a report and shared with
representatives of green rehabilitation providers in
Northumberland, social services and Northumberland Care Trust at a
conference. Upon your request, you will be given access to a copy
of this report or can be emailed key findings of the study.
We might also write the project and its findings up for
publication in a journal relevant to day care and rehabilitation
services for people with long-term health conditions, so that as
many people as possible can learn what service-users with long-term
health conditions really want from their services. In this
event, your name and identity will remain confidential. No
information which could be traceable to you will be
published.
What if I have concerns or want to make a
complaint?
We hope that you will really enjoy taking part in the study, and
have designed the process with the aim of making sure that this
happens. However, if at any time during or after the study you have
concerns or wish to make a complaint, these should be addressed to:
Dr Dorothée Debuse at Heather Lodge, Edlingham, Alnwick, NE66
2BL.
What happens next?
If, after reading this information sheet, you feel that you would
like to take part in the study or ask more questions about taking
part. Please contact Kelly Heartshorne (details at the bottom of
this page). So we can confirm venues, please can you let us know by
the 31st March 2012 if you would like to take part. The dates
and locations are as follows:
Tuesday 3rd April 2012 at 2pm: Dene House Farm, nr
Longframlington
Tuesday 10th April 2012 at 2pm: Choppington Social Welfare Centre,
Choppington
Wednesday 18th April 2012 at 2.30pm: Dene House Farm, nr
Longframlington
If you would like to take part, but are not able to attend any of
these dates please contact Kelly to see if an alternative
arrangement can be made.
Dorothée
Dr Dorothée Debuse, PhD, Principal Researcher
Chair and Lead Physiotherapist, Horse Power for Ability,
Senior Lecturer in Physiotherapy, Northumbria University
If you are interested in finding out more about taking part in the
study or have any questions about it, please get in touch
with:
Kelly Heartshorne
Researcher/Occupational Therapist
E-mail:kheartshorne@hotmail.com
Tel: 07968 024 726 (we will call you back so you don't have to pay
to call a mobile)
If you are unable to contact via the above, you can call 01904
470302 and leave a message.
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