Empowerment through Transparency and Feedback for Home Monitoring of Implantable Cardioverter-Defibrillator Patients
Authors
Kjærup, Maria ; Kouzeli, Stefania
Term
4. term
Education
Publication year
2016
Submitted on
2016-06-14
Pages
30
Abstract
This thesis examines how greater transparency and feedback in the home monitoring of patients with an implantable cardioverter-defibrillator (ICD) can support patient empowerment and a sense of control. Motivated by healthcare pressures and the move toward telemedicine, we present CardioTalk, a web-based application that enables ICD recipients to log symptoms and view their history as a complement to ICD device data. CardioTalk was deployed as a technology probe and followed by interviews with patients and nurses. We explored how patient-generated information can be used alongside device readings and how different forms of feedback affect reassurance and engagement. Participants were generally comfortable sharing information and found the tool valuable during symptom fluctuations; at the same time, they wanted clearer feedback on monitor operations and, despite trusting clinicians, sought more insight into what is shared, when, and by whom. Some worried that frequent use could lead to becoming overly focused on their illness. A gap in expectations also emerged: patients expected to be contacted when experiencing symptoms, whereas clinicians expected patients to initiate contact. In a complementary analysis, we identified empowerment opportunities and challenges across three themes: awareness, assurance, and accessibility. Overall, the work suggests that transparency and targeted feedback can enhance patients’ perceived control and collaboration in ICD home monitoring, but should be balanced with support that prevents undue anxiety and clarifies roles and responsibilities.
Dette speciale undersøger, hvordan øget gennemsigtighed og feedback i hjemmemonitorering af patienter med implanterbar cardioverter-defibrillator (ICD) kan understøtte patienters inddragelse og oplevelse af kontrol. Med udgangspunkt i pres på sundhedsvæsenet og en politisk ambition om mere telemedicin, præsenterer vi CardioTalk, en webbaseret applikation, der lader ICD-patienter registrere symptomer og se historiske forløb, som supplement til data fra deres ICD-monitor. CardioTalk blev anvendt som teknologiprobe og fulgt op af interviews med patienter og sygeplejersker. Vi udforskede, hvordan patientgenererede oplysninger kan bruges sammen med monitoreringsdata, og hvordan forskellige former for feedback påvirker tryghed og deltagelse. Deltagere var generelt trygge ved at dele information og fandt værktøjet nyttigt ved svingende symptomer; samtidig efterspurgte de mere feedback om monitorens drift og, trods tillid til sundhedspersonalet, ønskede større indsigt i, hvad der deles, hvornår, og hvem der ser det. Nogle udtrykte bekymring for at blive for optagede af sygdommen ved hyppig brug. Desuden viste sig en forventningskløft: patienter forventede at blive kontaktet ved symptomer, mens sundhedspersonale forventede, at patienten tog initiativ. I en supplerende analyse identificerede vi muligheder og udfordringer for empowerment inden for tre temaer: bevidsthed, tryghed og tilgængelighed. Specialet peger på, at gennemsigtighed og målrettet feedback kan styrke patienternes oplevelse af kontrol og samarbejde, men bør balanceres med støtte, der forebygger unødig uro og tydeliggør roller og ansvar.
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