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.
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:
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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