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«Citation: Dalkin, Sonia (2014) The Realist Evaluation of a Palliative Integrated Care Pathway in Primary Care: What Works, For Whom and in What ...»

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 What do you think the benefits of the ICP are?

 Are there any ways in which you think the ICP can be improved?

You may be contacted again about further focus groups, however attending one focus group does not mean you are have to attend the following future focus groups. It is also possible that you might be contacted and asked if you wish to take part in other parts of the research. You do not have to participate in all or any of the research you are invited to take part in. You can take part in some sections and not others.

What will be the cost of taking part?

There will be no financial cost to taking part in this study. We will however ask for 1 hour (maximum) of your time.

How might taking part affect me?

This study will not involve any physical risks, but answering questions about your experiences might be emotional or tiring. We cannot promise the study will help you personally but the information we get from this study will help improve the treatment of palliative care patients and aid the health professionals who work in the field. If you do feel distressed or upset by the focus groups you can contact Dr. Bill Cunningham who will be happy to talk to you about the study and provide support.

This completes Part 1. If the information in Part 1 has interested you and you are considering participation, please read the additional information in Part 2 before making any decision.

Part 2 Will taking part in the project be private and confidential?

Yes. We will follow ethical and legal practice and all information about you will be handled in confidence. This research is also for an educational project, as the chief investigator (Sonia Dalkin) is doing a PhD. All information you provide will be completely confidential in regards to this educational project. Anything that you provide will not be able to be traced back to you as you will be given a number instead of using your name. However, the researcher cannot guarantee confidentiality from others in the focus group.

All information will be stored on a secure, password protected computer within Northumbria University. It will only be able to be accessed by Sonia Dalkin, (the chief investigator), Dr. Anna Jones (academic supervisor), Dr. Monique Lhussier (academic supervisor) and Dr. Bill Cunningham (academic supervisor and GP). All personal information will be destroyed when the study ends (names will already have been replaced with a number and addresses will be destroyed) and any written and recorded information will be destroyed six years after the study ends.

Breaking confidentiality If you tell us something during the study that suggests you or someone else is at serious risk of harm we would then have to breach confidentiality. This means that we would report the issue to someone who could help. We will however inform you that we are going to do this.

What will happen if I don’t want to carry on with the research?

If you wish to withdraw from the research at any time you can and you do not need to provide a reason.

Who has reviewed the study?

All research in the NHS is looked at by independent group of people, called a Research Ethics Committee, to protect your interests. This study has been reviewed and given favourable opinion by Newcastle and North Tyneside 1 Research Ethics Committee.

What if there is a problem?

If there is a problem or you are not happy with the study please contact one of the researchers (contact details provided below) and we will do our best to answer any questions or queries you may have. We hope this is not the case, but if you are still unhappy and wish to complain formally, you can do this through the NHS complaints procedure on the internet, or you can contact your local Primary Care Trust (PCT), NHS North of Tyne, or you can contact the Principal Supervisor, Dr. Anna Jones at Northumbria University. Dr. Anna Jones’s details and North of Tyne PCT details are

below:

Dr. Anna Jones [contact details] NHS North of Tyne PCT complaints procedure [contact details] Additional Information This study aims to identify how palliative care can be improved and provide the best support to people with life limiting illnesses. If, for any reason, you are no longer able to provide us with any feedback once your interview is completed, we would still really value being able to use the focus group data. This is so that your experiences may help improve palliative care for other people. By agreeing to take part in the study, you are also giving consent for us to use your interview data at any point in the future, in relation to studying palliative care.

Contact details If you have any concerns or would like further information about the study, please feel free to contact us.

Sonia Dalkin (Chief Investigator), [contact details] Dr. Bill Cunningham, GP and Chair of the Palliative Care Partnership [contact details] What happens now?

Many thanks for taking time to read about this study. If you would like to take part please reply to this email within 2 weeks of receiving it. You will then receive a confirmation email with the location of the focus group. A light lunch will be provided before the focus group commences.

Many Thanks, Sonia Dalkin Chief Investigator Appendix 17 Consent form for focus groups with health professionals Version 1

–  –  –





2. I understand that my participation is voluntary and that I am free to withdraw at any time without giving any reason, without my medical care or legal rights being affected.

–  –  –

Name of Participant _________________________

Date _____________________________________

Signature _________________________________

Name of Researcher ________________________

Date _____________________________________

Signature _________________________________

If you would like more details about the project, please do not hesitate to contact the

researcher, Sonia Dalkin, by email: sonia.dalkin@northumbria.ac.uk or by telephone:

07792768226.

Appendix 18 Invitation letter for interviews with palliative care patients Version 2

–  –  –

You are invited to take part in this research study.

We are doing important research into the new Palliative Care Integrated Care Pathway in [the locality]. It is a study funded by NHS North of Tyne Primary Care Trust and Northumbria University.

What will this study do?

This study is part of Sonia Dalkin’s PhD at Northumbria University which investigates the new palliative care system in [the locality]. It hopes to find out new and interesting things about the system, including how it works, and who it works for (for example, patients, family, carers, GPs, nurses). It will also help the system improve itself, therefore improving palliative care as the study is taking place. This research is important as its overall aim is to inform and improve palliative care practice on both a local and national level so that individuals have open and easy access to the supportive care they need, which will ultimately lead to a peaceful death.

How could you take part?

If you are interested in taking part, we will ask you to attend an interview to discuss your experience of Palliative care.

What to do if you are interested in taking part and want more information?

If you would like to find out more information about the study, please take the time to read the Information Sheet included with this letter. This will give you more information about the study and what you would do if you participated. We would like you to share the information sheet with your friends, family are carers if you wish to, as they could possibly be involved also. You may also contact the researcher if you would like to find out more information or ask questions. The contact details of Sonia Dalkin are at the end of this letter and in the information sheet.

If you have decided you do not want to take part in the study, you do not need to do anything.

Thank you for taking the time to read this letter.

Contact Details Sonia Dalkin, Principal Researcher [contact details] Appendix 19 Invitation letter for interviews with bereaved relatives and carers Version 2 Understanding integrated care pathways in palliative care – context, approaches, outcomes.

[A Research Study] Dear Sir/Madam, Firstly may we say that we are extremely sorry for the recent loss of your loved one.

We are contacting you as we are doing research into the new Palliative Care Integrated Care Pathway in [the locality] that your loved one had experience of. It is a study funded by NHS North of Tyne Primary Care Trust and Northumbria University and we think you could help contribute to the research.

What will this study do?

This study is part of Sonia Dalkin’s PhD at Northumbria University which investigates the new palliative care system in [the locality]. It hopes to find out new and interesting things about the system, including how it works, and who it works for (for example, patients, family, carers, GPs, nurses). It will also help the system improve itself, therefore improving palliative care as the study is taking place. This research is important as its overall aim is to inform and improve palliative care practice on both a local and national level so that individuals have open and easy access to the supportive care they need, which will ultimately lead to a peaceful death.

How could you take part?

You are invited to take part as you have recently lost a loved one who was a palliative care patient. If you are interested in taking part, we will ask you to attend an interview to discuss your experience of palliative care in [the locality].

What to do if you are interested in taking part and want more information?

If you would like to find out more information about the study, please take the time to read the Information Sheet included with this letter. This will give you more information about the study and what you would do if you participated. We would like you to share the information sheet with your friends and family if you wish to, as they could possibly be involved also. You may also contact the researcher if you would like to find out more information or ask questions. The contact details of Sonia Dalkin are at the end of this letter and in the information sheet.

If you have decided you do not want to take part in the study, you do not need to do anything. Thank you for taking the time to read this letter.

Contact Details Sonia Dalkin, Principal Researcher [contact details] Appendix 20 Information sheet for interviews with palliative care patients’ relatives Version 2 Understanding integrated care pathways in palliative care – context, approaches, outcomes.

[A Research Study] Information Sheet Part 1 We would like to invite you to take part in this research project. Before you make a decision about taking part we want to make sure you understand why the research is being done and what it would involve for you. Please take the time to read the following information carefully and talk to others about the study if you wish. Part 1 will provide a brief summary of the research and Part 2 will give more detailed information about the study.

If you have any difficulties, or need other help to understand the information please contact us and we will be happy to help.

Below is a list of terms used in this document that you may not be familiar with:

 Service user: This is any person who comes into contact with the National Health Service (NHS). This includes patients, carers, family members and advocates.

 Integrated Care Pathway (ICP): An integrated care pathway involves many teams working together, for example the GP surgery, the community nurses, the North east ambulance service and Tynedale hospice at home all working together to provide the best possible care for patients.

By taking part, you will be contributing to a local study that aims to make a real difference to life limiting illness and palliative care. This will be done through identification of pathway mechanisms that contribute to a successful outcome in an ICP. This could then improve the quality of palliative care delivered in [the locality], and the rest of the county.

What is the purpose of the study?

[The locality] has created a new ICP which provides individuals who have life limiting illness with access to supportive palliative care including the best symptom control, shared decision making about treatment and generally increased choice about care, leading to a peaceful death with an individual’s needs fully met. The ICP is now in place and as a palliative care patient’s relative in [the locality] you have been selected as a potential participant. This research wants to find out how the ICP works, for example, does it enable better communication between patients and GPs, or better planning and co-ordination? We also want to look at who the ICP is benefitting; does it benefit palliative care patients? Are families happy with it? Are health professionals happy with it? So, we would like to hear from patients, family members, carers and health professionals, in a variety of ways, about their experience of the ICP.

Why have I been invited to take part in the study?

You have been invited to take part as you are identified as a palliative care patient’s friend, relative or carer and they would like you to take part in the study with them.

Do I have to take part?

No, taking part in this study is voluntary and you do not have to take part. We will explain the study to you in this Information Sheet and if you have any questions or you are unsure whether you understand everything please feel free to contact us (our contact details are on the bottom of this information sheet). If you decide you would like to take part, we will ask you to fill in the reply slip at the bottom of this information sheet and return it to the chief investigator (Sonia Dalkin) with the stamped and addressed envelope provided.

If you take part and decide that you have changed your mind and no longer wish to be involved you can stop taking part and withdraw at any time. You do not need to provide a reason. There will be no detrimental effects on you or your care from the NHS. You and your family will still have access to services on the palliative care pathway.

What will happen to me if I take part?



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