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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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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 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 questionnaire 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 fill in the reply slip below within two weeks of receiving it and send it via the stamped and addressed envelope provided. The reply slip will then be securely passed on to Sonia Dalkin. If you need help to fill in the reply slip please contact us. When we receive the reply slip we will then post you a copy of the questionnaire.

 I would be interested in taking part in the study, and hereby give permission to be sent a questionnaire by the research team. I understand that before taking part, I will need to fill in a consent form and that if I want to I can withdraw from the study at any time, and that this will not affect my standard of care from the NHS.

Name __________________________

Signature __________________________

Date __________________________

Home address for questionnaire to be sent to:

_____________________________________________________________________

_____________________________________________________________________

_____________________________________________

Appendix 8 Quality of Dying and Death Measure consent form for bereaved relatives 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 9 Invitation letter for Quality of Death and Dying Measure for Health Professionals 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 fill in a short questionnaire which will ask questions about a palliative care patient’s death.

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. 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, [contact details] Appendix 10 Information sheet for health professionals approached to complete the Quality of Death and Dying Measure 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. 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 Integrated Care Pathway (ICP). This could then improve the quality of palliative care delivered in [the locality], and the rest of the county.

Please take time to decide whether you would like to take part.

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 health professional in [the locality] you have been selected as a potential participant due to your involvement with the ICP. This research wants to find out how the ICP works, for example, is it better communication between patients and GPs, or is it better planning and co-ordination? We also want to look at who the ICP is benefitting; does it benefit palliative care patients? Are their 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 complete this questionnaire as the family of a previous palliative care patient you worked closely with have agreed to answer questions on the death of their loved one. It is hoped this will help us decipher whether the ICP is working to its full potential and identify areas where it could potentially be improved.

The deceased palliative care patient’s family will not see your answers to the questionnaire, and you will not see their answers.

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 sign the reply slip at the end of this Information Sheet to show you have agreed for a member of the research team to contact you to arrange the questionnaire to be posted to you.

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. There will be no detrimental effects on you, your patients or your employment. Your patients will still have access to services on the palliative care pathway.

What will happen to me if I take part?

If you decide you would like to take part in this research, we would like you to fill in the reply slip at the end of this Information Sheet. The researcher (Sonia Dalkin) will then send you a questionnaire that you will fill in and send back. We will provide you with a stamped and addressed envelope. You will also receive a consent form which will just make sure that you understand what we are doing with the information you provide us with.

You will not be contacted again in relation to this section of the research once you have returned the questionnaire and consent form in the stamped and addressed envelope provided. However, it is likely that you might be contacted and asked if you wish to take part in other parts of the research, such as focus groups. You do no 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 and you can withdraw from any section of research at any time. Please remember that there will be no detrimental effects on you, your patients or your employment if you choose to withdraw. Your patients will still have access to service on the palliative care pathway.

What will be the cost of taking part?

There will be no financial cost to taking part. We will however ask for 30 minutes (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 but the information we get from this study will help improve the treatment of palliative care patients. If you do feel distressed or upset by the questionnaire 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. 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.

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. This will not affect your employment or your patient’s access to the palliative care pathway services.

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 or by contacting the Principal Supervisor, Dr. Anna Jones at Northumbria

University. Both of their contact details are below:

Dr. Anna Jones [contact details] NHS North of Tyne Complaints [contact details] Additional Information This study aims to identify how palliative care can be improved and provide 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 questionnaire 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 fill in the reply slip below within two weeks of receiving it and post it to the address provided above for Sonia Dalkin. You will then be posted a copy of the questionnaire. Please return the questionnaire and the consent form that you have received to Sonia Dalkin as soon as possible.



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