User involvement in the encounter between the patient with mental illness and the health care system: the meaning of e-health

Background: In all areas of healthcare, the use of e-health has grown rapidly during the last two decades, especially after the COVID-19 pandemic entered the scene in 2020. One of the areas where e-health has been used even more during the pandemic is mental healthcare. The potential of e-health for treating severe mental illness is demonstrated by positive results regarding medi-cation adherence, symptom severity, cognitive therapy, and hospi-talisation length. Numerous studies indicate that e-health has po-tential for adjunctive use with more conventional mental health treatments. In addition, studies have shown that patients perceive e-health treatment as helpful to enabling flexible communication with healthcare professionals and to motivate patients to be in-volved in their treatment. However, for treatment to be efficient, it is paramount for patients to be engaged, experience a trusting relationship with their healthcare professional, and feel recog-nised. For a successful implementation of e-health treatment, it is crucial that patients find the e-health solution useful and experi-ence being involved in its use; thus, patients’ experience of the use of e-health in their everyday lives and treatment is important.

Aim: This PhD project has aimed to explore how user involvement is constituted in the encounter between patients with mental ill-ness, and mental healthcare services, when e-health is used, in-cluding different opinions on and possible impacts of user in-volvement. The focus is on patients with mental illness and how they use e-health services in collaboration with healthcare profes-sionals.

Methods: This thesis has included a systematic review and two exploratory studies to explore its aim. Study 1 was conducted as a systematic review to explore how patients with severe mental ill-ness experience the role of e-health in their treatment. To be eligi-ble, studies were required to include people between 18 and 65 years old with mental illness, defined as depression, anxiety, bipo-lar disorder, schizophrenia, or personality disorder. An additional criterion for inclusion was that patients’ experiences with tele-health solutions were reported. Three databases, Embase, MED-LINE, and PsycINFO, were searched between April 5, 2020, and June 29, 2020 (renewed November 10, 2021). The included stud-ies were critically appraised using the CASP checklists. Study 2 was a qualitative exploratory study that collected data via repeat individual interviews with a social phenomenological approach, to explore patients’ views on e-health solutions. Inclusion criteria were: patients 18 to 65 years old, diagnosed with severe mental illness (schizophrenia, bipolar disorder, or depression), using an e-health solution in collaboration with a healthcare professional. Eight participants were included, and the interviews lasted be-tween 20 and 70 minutes; interviews were audio recorded and transcribed afterwards. Study 3 applied a variety of qualitative methods to explore healthcare professionals’ use of e-health solu-tions in treatment, combining observations, unstructured inter-views and conversations with healthcare professionals. All includ-ed treatment sites (n = 3) used e-health, mostly apps, in their treatment practices, to connect with patients and help them estab-lish structure, or help them navigate their days. This study includ-ed 10 participants between 35 and 61 years old; all were nurses, nursing assistants or social workers, hereafter referred to as healthcare professionals.

Results: E-health has been widely considered to offer a large po-tential to help with aspects of treatment that patients had previ-ously found highly challenging without e-health solutions. The participants used e-health solutions in very different ways and assigned it different values related to their treatment. Regarding face-to-face versus online treatment, all three studies indicate that participants found in-person meetings to be superior. However, flexibility and adaptability in using e-health solutions when they suited patient schedules were among the factors that contributed to patient engagement. The tracking features of the e-health solu-tions also contributed to improved knowledge and collaboration around patients’ conditions and illnesses. In addition, the relation-ship with the healthcare professional had a key role in patient ac-ceptance of e-health solutions. Patients were more willing to let healthcare professionals push them to uphold their end of agree-ments because the e-health solutions provided structured remind-ers. All participants reported that they considered involvement in treatment to be highly important, and the use of e-health solutions increased patients’ experiences of being involved in and feeling in control of their treatment. Healthcare professionals reported need-ing in-person meetings when commencing a new patient relation-ship, to create an adequate foundation to help the relationship flourish and work effectively via e-health solutions.

Conclusion: This study finds that the use of e-health solutions for treating mental illnesses offers an option to be involved and en-gage patients in their own treatment if e-health is used on their terms and in collaboration with a healthcare professional they trust.