Research project
Title: Understanding expectations of, and satisfaction with, Deep Brain Stimulation of the subthalamic nucleus: Patient and carer perspectives in Parkinson's disease
Project timescale: From 01 September, 2009 to 31 July, 2010
(Added to website on: 28 July, 2009 - Date last updated: 29 July, 2009)
Source of funding:
University of Sheffield
Aims: This study aims to explore the issues important to individuals with Parkinson's disease and their carers when considering undergoing a neurosurgical procedure (Deep Brain Stimulation) designed to their movement symptoms. Most research has assumed that improvements in movement symptoms will equate to patient and carer satisfaction with surgery. However, other issues may be of greater importance to them, for example its impact on family relationships, activity levels, self-image, and/or level of independence. My study aims to explore both their expectations of this procedure and their subsequently evaluations of it after surgery. The types of questions I will be looking to explore will be: 1) Do participants use the same issues to evaluate surgical outcome as they discussed prior to surgery; 2) Are certain pre-surgery expectation likely to result in dissatisfaction with surgery; 3) Do patients and carers differ in their expectations of surgery and their subsequent evaluations of surgical outcome?
Research designs used:
Evaluation
Study of views/experiences
Methods used to collect data:
Interviews
Validated instruments eg Outcome measures
Research project description: The research will examine patient and carer views through semi-structured interviews. Participants will be recruited from two NHS neurosurgical units. Participants must have a diagnosis of Parkinson's disease, be planning to undergo the stated neurosurgical procedure, and be able to converse in English. Their carers will also be invited to participate. It is hoped to recruit 8 patients and their carers. This will be a longitudinal study in which participants will be asked to discuss their expectations of the procedure in the months prior to surgery. They will then be invited for another interview around 6 months after surgery and will be asked to discuss issues impacting on their satisfaction with surgery. Interviews will take place in the hospital where the patient has received treatment. After this interview data has been collected, it will be transcribed and its content analysed using a qualitative analysis approach called Template Analysis which will identify themes discussed by participants.
Stages at which the public were involved:
Planning the research
Undertaking the research
Assisting in finding and designing appropriate
ways of approaching participants
Description of public involvement in research stages: The stage at which member of the Parkinson's Disease Society have been involved has been largely at the stage prior to seeking ethical approval for the study. The aim of their involvement has been to produce a study approach that ensures participants are fully informed prior to consenting to participate in the study. This has centred around producing a clear and informative Participant Information Sheet and Consent Form. Member of the society have also been able to provide their input into the how the research is conducted, specifically around the types of questions asked to participants during the interview and also the timing of the participants' post-surgical interview.
Training and support provided for either members of the public or researchers involved in the project: No
Examples of ways the public have made a difference to the research project: I feel the involvement of members of the public has meant that the study is more ethical. Involving them in the construction of Patient Information Sheets and Consent Forms has meant that the information participants receive should address the issues that potential participants will want to know about, therefore helping them make an informed decision about whether to participate. The participation of members of the public has also helped reduce any risk of emotional distress that might be experienced by participants. It was important to construct an interview schedule that was likely to lead to the gathering of useful information about service-users views. At the same time it was recognised that discussing certain issues might be emotionally difficult for participants and the involvement of member of the Parkinson's Disease Society will hopefully mean that the wording of interview questions can be sensitive to any areas likely to be particularly emotive for participants. Finally, it is hoped that involving members of the public will add to the scientific credibility of the study. Through consulting with members of the Parkinson's Disease Society about the appropriate timing of follow-up interviews it is hoped that the study will be able to ask participants about their evaluations of surgery at a time that will allow them to give an accurate assessment of the benefits and negatives of surgery.
Evaluating the impact of public involvement in the research: Yes. As part of my thesis I will expected to reflect on the involvement of members of the public and service-users. I will be seeking to reflect on how their participation has added to the research, and how in future research I may increase the role of public involvement in any study I conduct.
Details of publications or reports resulting from the research: The study is currently undergoing the ethical approval process. It is hoped that articles from the research will be drafted in Autumn of 2010.
Links to Reports:
Was/is your project user controlled: No
For further information on the project, please contact:
Mr Alan Gray
Chief Investigator
University of Sheffield
Clinical Psychology Department
University of Sheffield
Western Bank
Sheffield
South Yorkshire
S10 2TN
United Kingdom
pcp07amg@sheffield.ac.uk
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