Collaboratively with patients and their co-habitants, our work will test the best ways to explore the experience of and outcomes that matter to home haemodialysis (HHD) patients by piloting processes of information collection and identifying the instruments that are best suited to this patient group and these circumstances.
At patient and carer interviews we will map the individual journey to HHD, understand achievement of competencies, barriers, facilitators and support mechanisms. We will aim to better understand carer burden. We will evaluate the use of Social Return on Investment methodologies to measure broader socio-economic outcomes, permitting the inclusion of the views of multiple stakeholders in a singular monetary ratio.
Our specific objectives will be to better understand:
- The patient and carer (cohabitee) experience of home haemodialysis and wider support needs
- Community links (assets) and how these can be utilised to reduce social isolation
- The educational experience that HHD patients receive to prepare them for the modality choice and uptake of the therapy
- The health economics of HHD including the monetary and non-monetary costs using SROI methodologies
- The technological challenges of HHD with a view to identifying practical solutions
The ultimate goal will be to use this pilot information to prepare a research grant that will allow us to develop an intervention(s) that enables better support for HHD from the patient perspective and therefore makes HHD a much more attractive option to patients.
Please find the Study Protocol and Site Initiation visit presentation here for your information
Study Information Sheets
Patient Information Sheet and Carer Information Sheet
Interview Information Sheet