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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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---------------------------------------------------------------------------------------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. I understand that this will not affect my employment or my patient’s access to services.

Name __________________________

Signature __________________________

Date __________________________

Address (for questionnaire to be sent to):

_____________________________________________________________________

_____________________________________________________________________

_______________________________________

Appendix 11 Quality of Death and Dying Consent form for 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 12 - The Quality of Dying and Death Measure In the box provided next to each statement please rate it from 0 to 10, where 0 was a “terrible experience” and 10 was an “almost perfect experience”. How would you rate the following aspect of your loved ones dying experience…

1. Having pain under control.

2. Having control of event.

3. Being able to feed oneself.

4. Having control of bladder, bowels.

5. Being able to breathe comfortably.

6. Having energy to do things one wants to do.

7. Spend time with your children as much as you want. (or I have no children)

8. Spend time with your friends and other family as much as you want.

9. Spend time alone.

10. Be touched and hugged by loved ones.

Reminder: 0 = Terrible Experience, 10 = Almost perfect experience

11. Say goodbye to your loved ones.

12. Have the means to end your life if you need to.

13. Discuss your wishes for end-of-life care with your doctor and others.

14. Feel at peace with dying.

15. Avoid worry about strain on your loved ones.

16. Be unafraid of dying.

17. Find meaning and purpose in your life.

18. Die with dignity and respect.

19. Laugh and smile.

20. Avoid being on dialysis or mechanical ventilation.

21. Location of death (home, hospice, hospital).

Reminder: 0 = Terrible Experience, 10 = Almost perfect experience

22. Die with/without loved ones present.

23. State at moment of death (awake, asleep).

24. Have a visit from a religious or spiritual advisor.

25. Have a spiritual service or ceremony.

26. Have health care costs provided.

27. Have funeral arrangements in order.

28. Spend time with spouse, partner. (or I have no spouse, partner)

29. Spend time with pets. (or I have no pets)

30. Clear up bad feelings. (or there were no bad feelings to clear up)

31. Attend important events. (or there were no important events to attend) This is the end of the questionnaire. Thank you very much for filling it in. Please now return it using the stamped and addressed envelope provided.

Statistics about the psychometric properties of the measure The Cronbach’s alpha is commonly used as an estimate of the reliability of a psychometric test (Pallant 2010). The Cronbach’s alpha for the QODD total score was 0.89 (Curtis, Patrick et al. 2002). A Cronbach’s alpha of 0.7 – 0.9 is good. A Cronbach’s alpha of 0.9 is excellent (Curtis, Patrick et al. 2002). A systematic review identified 6 published measure of the quality of death and dying (Hales, Zimmerman et al. 2010). Of the six published measures reviewed, the Quality of Dying and Death questionnaire (QODD) is the most widely studied and best validated (Hales, Zimmerman et al. 2010).

Appendix 13 - Research and Development approval Appendix 14 - letter to charitable organisations Sonia Dalkin [contact details] 27/02/12 Dear Sir/Madam, I am a PhD student at Northumbria University working in collaboration with NHS North of Tyne PCT. I am currently developing a study to investigate and evaluate the new life limiting illness and palliative care integrated care pathway in [the locality]. In order to get a full understanding of how the Integrated Care Pathway (ICP) works we would like to host 3 focus groups in 2012 at Burn Brae Medical Group in Hexham, [the locality]. Since your organisation has been involved with the new ICP we would like to request approval for your staff to be approached to take part in the aforementioned focus groups.





These focus groups will involve 8-12 people each time. Your staff can attend one, two or all of the focus groups, it is completely up to them. They will be contacted via email with an invitation and information sheet and then provided with a consent form. The focus groups will include a variety of health professionals involved with the ICP, including GPs, community matrons, Macmillan nurses district nurses, hospice staff, North East Ambulance Service staff, Northern Doctors Urgent care staff, charitable organisation staff and social workers.

The focus groups will discuss the ICP and prompt collaborative discussion about how the ICP works, what is beneficial about it and what is not beneficial. It is hoped that not only will this focus group generate data for the evaluation of the ICP, but it will also help the ICP improve as information generated from the focus groups will be anonymously fed back in order to have continuous quality improvement.

You and your staff would receive a short report at the end of the study detailing the information generated from the focus groups. The study has full ethical approval from the Newcastle North Tyneside 1 Committee. This approval was gained on 12.01.12 If you would like more information please don’t hesitate to contact me via phone (07792768226) or email (sonia.dalkin@northumbria.ac.uk). If you feel you have sufficient information to make an informed decision could you please contact me via email giving permission for me to approach your staff to ask them if they would like to take part in the focus groups. Alternatively, you can just fill in the slip below and return it to the address below.

Sonia Dalkin Room H007, School of Health, Education and Community Studies Coach Lane Campus, Northumbria University Coach Lane Newcastle Upon Tyne NE7 7XA I look forward to hearing from you.

Yours Sincerely Sonia Dalkin Post Graduate Research Student I hereby give my approval for staff at Charlotte Straker Hospice to be approached to take part in the focus groups for the study “Understanding Palliative Care Integrated Care Pathways – Context, Approaches, Outcomes”.

Name:

_____________________________________________________________________

_______

Signature:

_____________________________________________________________________

____ Date: ______________________

Appendix 15 Invitation letter for focus groups to health care professionals Version 2

–  –  –

You are invited to take part in this research study.

We are doing 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 a focus group with a variety of health professionals to discuss the benefits and challenges of the new ICP.

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] Appendix 16 Information sheet email to be sent to health professionals for focus groups 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 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 or not you would like to participate.

What is the purpose of the study?

[The locality] has created a new Integrated Care Pathway 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 take part as you have been identified as a health professional working within [the locality] who has experience of the palliative care ICP.

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 reply to this email in order to confirm your attendance at the focus group.

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, 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 and the date, time and place of the focus group (stated in the email accompanying this letter) is convenient for you,

we would like you to reply to this email (email address:

sonia.dalkin@northumbia.ac.uk). The researcher, Sonia Dalkin, will then send you an email confirming she has received your reply and provide you with a consent form.

This will ensure sure that you understand what we are doing with the information you provide us with in the focus groups. We ask that you fill in this consent form and bring it with you to the focus groups.

The focus group will last approximately 1 hour. It will take place with around 8 – 12 other health professionals form a variety of backgrounds. You do not have to contribute to any of the discussions if you do not wish to. Before the focus group, Sonia Dalkin will explain the study in person to all participants 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 focus group discussions will cover topics such as:

 The ICP entails multidisciplinary work – how is this operationalised?



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