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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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If you decide you would like to take part in this research we would like you to complete and return the reply slip at the bottom of this information sheet. The chief investigator (Sonia Dalkin) will then call your loved one to arrange a convenient time for an interview with you both. We will ask that you bring the consent form provided in this pack with you to the interview. This consent form will ensure sure that you understand what we are doing with the information you provide us with in the interview.

Before the interview, Sonia Dalkin will explain the study in person and answer any questions you may have. Your signed consent form will then be collected. Spare consent forms will also be available though we would prefer if you had ample time to read them before agreeing to participate. The interview will be recorded using a digital voice recorder and the chief investigator will also take notes.

The interview will last approximately 1 hour. You do not have to answer any question

you do not wish to answer. The interview will cover topics such as:

 What experience of palliative care have you had?

 Have there been any instances where you think your care could have been handled better?

 Do you think the communication between all the different services is good?

For example between the hospital and your GP?

Throughout the interview, the researcher (Sonia Dalkin) will check that she understands your point of view and has recorded it correctly, and that you are happy with it. You will not be contacted again once the interview has taken place. However, you can contact the researcher and request a summary of what the research finds or a copy of the full report if you wish. If you forget to tell the researcher something, you can contact her after the interview (her contact details are below, but will also be provided after the interview for you to take home) and she will add it to your record.

What will be the cost of taking part?

There will be no financial cost to taking part. We will however ask for 1 hour (maximum) of your time. Any money you spend on travel will be reimbursed.

How might taking part affect me?

Answering questions about your experiences of your loved one’s care or your experience of the service might be emotional or tiring. You can stop for a break during the interview at any time, or stop the interview completely. You will not be at any physical risk in this study. 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 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. Your GP practice will not have access to any of the recorded data from this study.

All information will be stored on a secure, password protected computer within Northumbria University in Newcastle. 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 have already 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. Please remember that whether you decide to take part, not take part or take part then withdraw, the standard of care you receive from the NHS will no be affected.

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 contacting the NHS North of Tyne PCT 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 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 interview 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 and return it using the stamped and addressed envelope enclosed within 2 weeks. Sonia Dalkin (chief investigator) will then contact your relative, carer or friend to arrange a convenient time and place for the interview with both you and them.

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

Your Name __________________________

Loves one’s name __________________________

Signature __________________________

Date __________________________

Telephone number _______________________

Appendix 21 Information Sheet for interviews with bereaved relatives, friends and carers 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 need you 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.

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.

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 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 bereaved relative or carer 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 relative, friend or carer of someone who was a palliative care patient.

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 the 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 complete and return the reply slip at the bottom of this information sheet. The chief investigator (Sonia Dalkin) will then telephone call you to arrange a convenient time for an interview. We will ask that you bring the consent form provided in this pack with you to the interview. This consent form will ensure sure that you understand what we are doing with the information you provide us with in the interview.

Before the interview, Sonia Dalkin will explain the study in person and answer any questions you may have. Spare consent forms will also be available though we would prefer if you had ample time to read them before agreeing to participate. The interview will be recorded using a digital voice recorder and the chief investigator will also take notes.

The interview will last approximately 1 hour. You do not have to answer any question

you do not wish to answer. The interview will cover topics such as:

 What were yours and your loved one’s experience of life limiting illness and palliative care in [the locality]?

 Have there been any instances where you think their care could have been handled better?

 Do you think the communication between all the different services is good?

For example between the hospital and your GP?

Throughout the interview, the researcher (Sonia Dalkin) will check that she understands your point of view and has recorded it correctly, and that you are happy with it. You will not be contacted again one the interview has taken place. However, you can contact the researcher and request a summary of what the research finds or a copy of the full report if you wish. If you forget to tell the researcher something, you can contact her after the interview (her contact details are below, but will also be provided after the interview for you to take home) and she will add this to your record.

We would like to encourage you to bring along family, friends or carers to the interview if you wish to do so. Please let the researcher know if this is the case so she can provide an information pack for them also.

What will be the cost of taking part?

There will be no financial cost to taking part. We will however ask for 1 hour (maximum) of your time. Any money you spend on travel will be reimbursed.

How might taking part affect me?

Answering questions about your experiences might be emotional or tiring. You can stop for a break during the interview at any time, or stop the interview completely.

You will not be at any physical risk in this study. We cannot promise the study will help you personally but the information we get from this study will help improve the treatment of life limiting illness and palliative care patients. If you do feel distressed or upset by the interview 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?



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