PhD: qualitative study to investigate the information needs of people living with Parkinson's

That is the title of a PhD being funded at the University of East Anglia. I do not qualify, as the candidate needs to have previously existing research skills. However, it sounds interesting enough that I am pasting the description below.

Main Supervisors: Dr Charlotte Salter, Dr Alexia Papageorgiou,

Background
Many useful information resources exist for people with Parkinson’s, championed by among others the UK PDS.  Information needs differ between people. However, there is little evidence that the amount and type of information provided to patients with chronic neurological conditions at or soon after diagnosis, has any impact on both short and long term measurable outcomes. Moreover, there are no data as to whether there is a minimum or core amount of information that should be provided.  

Aims
The aim of this qualitative pilot study is to develop a checklist of critical or core information that can be imparted to people with Parkinson’s Disease by healthcare professionals at diagnosis and in the period immediately following diagnosis.

Methods
In-depth, semi-structured interviews will need to be conducted with a full range of stakeholders including patients, carers and clinical staff, about their views on the most important pieces of information to be given at the diagnostic consultation and early follow up.  For the data analysis the framework approach is suggested to analyse the interview data.  The stages of framework analysis include: familiarisation; thematic coding and development of a coding frame; indexing; and, charting and would facilitate the needs of this study.   However, the student would be encouraged to develop and modify this qualitative in-depth methodology.  Therefore, experience in qualitative research methods at undergraduate or postgraduate level is essential.

Outcomes
It is envisaged that common themes will be identified as well as overlap and difference between stakeholders in information giving and receipt.  A checklist will be developed that incorporates agreed core information needs for every patient but is also responsive to different patients’ needs and preferences.

This study will link to a future planned programme of research for which further funding will be sought.   In particular the checklist will be tested and validated through an RCT.

References 

Grosset KA and Grosset DG. Effect of educational intervention on medication timing in Parkinson's disease: a randomized controlled trial. BMC Neurology 2007; 7:20

MacMahon DG, Thomas S. Practical approach to quality of life in Parkinson's disease: the nurse's role. J Neurol 1998; 245 [suppl 1]:S19-S22

McPherson, C., Higginson,

I.

, and Hearn, J (2001) “Effective methods of giving information in cancer: a systematic literature review of randomized controlled trials”.  Journal of Public Health Medicine Vol.23,No.3 pp.227-234

NHS National Institute for Health and Clinical Excellence.   Parkinson’s disease:  Diagnosis and management in primary and secondary care.  NICE clinical guideline 35.  June 2006

Ritchie & Spencer. (1994) ‘Qualitative data analysis for applied policy research’, in A. Bryman and R. G. burgess (eds), Analyzing qualitative data. 

London

: Routledge, pp. 173-94