Neethi Reddy Bathula HCI4H: Thursday 9 February 2016 Studying Patients’ Interactions with Home Haemodialysis Technology: The Ideal and The Practical Neethi Reddy Bathula HCI4H: Thursday 9 February 2016

Overview This case study reflects on the methods used to investigate how renal patients and their caregivers interact with home haemodialysis technology. Goals: Understand the interaction issues these stakeholders face Understand how technology design could be improved for use in the home Haemodialysis is just an example that is used in the case study – but main focus is to see how patients and caregivers interact with technology as the healthcare moves to the home environment where patients are becoming more responsible and open to their own care.

Overview Being open to changes in research approaches to suit the healthcare setting Limitations on the methods that can be used with sick patients and what they can contribute during data collection Interview techniques that can be used to elicit information about home technologies

Home Haemodialysis This is a treatment for patients suffering from kidney failure Treatment: a patient’s blood gets cleaned as it flows into a special filter, which is connected to a machine Study focus: What contexts renal patients and caregivers interact with the machine Interaction issues with the machine How patients cope with issues These insights can help inform the design of safe and patient-friendly home healthcare technology http://www.homedialysis.org/home-dialysis-basics/machines-and-supplies/hemodialysis-machines

Study Design Process Gaining access to the field (permissions) Medical devices being studied: Home haemodialysis machine – renal patients Ambulatory infusion pumps – used by nurses in hospitals Ambulatory infusion pumps – palliative care nurses in hospice National Health Service (NHS) ethics approval Hospital-specific R&D approval Time: 6 months to start first study Participant recruitment Data gathering approach

Participant Recruitment Home nurse contacted hospital’s home patients who were viable candidates Home visits: Information sheet provided for each participant Approved by hospital R&D office Different versions for staff members, patients and caregivers Purpose of study explained Consent recorded on a form Only home haemodialysis study went ahead Lesson: important to consider several possibilities when planning these kinds of studies

Data Gathering Approach Loaning patients handheld video recorders to keep diaries and capture minor incidents Solution to privacy issue of gathering data in home setting Researchers observations, interviews, analyses of device behavior through bench tests, consultation of system/device manuals Each data gathering approach evaluated to see which techniques worked the best to use for future studies

Issues with Data Gathering Video diaries not a viable approach Out of 3 participants, only one made a recording of only one incident Feedback: it was not practical to hold recorder in one hand and try to fix the problem with the other hand – if caregiver was absent (even with tripods) Feedback: Caregiver reflex is to fix the problem first, not record it Participants did not have the time, energy or enthusiasm for this extra activity Dialysis side effects cause patients to feel nauseous/headachy after treatment Participants did not have the time, energy or enthusiasm to invest more time than they already do in their dialysis activity. Observations not well suited to be the staple source of data on patient’s interaction strategies with technology.

Issues with Data Gathering Observations were unpredictable in duration and frequency No structure and timing was crucial – patients had different preferences for when they were willing to be observed Gathering calls to technicians not practical Record not computerized Participants did not have the time, energy or enthusiasm to invest more time than they already do in their dialysis activity. Observations not well suited to be the staple source of data on patient’s interaction strategies with technology.

Staple Data Source - Interviews Interviews – best source of data Use critical incident technique: “Set of procedures for collecting direct observations of human behavior to facilitate their potential usefulness in solving practical problems”. Participant asked to recount experiences

Interview Challenges Patient inclination to “protect” the technology It makes their life easier, so they are grateful for it and they don’t want other people to see it in a bad light Patients can’t distinguish between design flaws and lack of competency May not completely honest with their feedback as they were formally assessed before being allowed to start home care. Natural high acceptance of technology, regardless of design flaws Interaction difficulties are outside their normal perspective, so they may not mention these observations at all.

The Critical Incident Technique (CIT) Helps encourage people to talk openly about challenges faced Critical incidents gathered by asking patients to tell a story about an experience they have had Probe questions in the right areas Gives interview a clear focus so participants can understand Distinguishing between actual incidents and just general opinions/impressions which may be biased Helps researcher identify underlying interaction issues A critical incident can be described as one that makes a contribution—either positively or negatively—to an activity or phenomenon. Critical incidents can be gathered in various ways, but typically respondents are asked to tell a story about an experience they have had.

Conclusions Researchers were able to gather data on renal patients and caregiver interactions with haemodialysis technology Preliminary study enabled various data gathering techniques to be evaluated Interviews proved to be the best source of data with the aid of the critical incident technique