Empowered patients and informal care-givers as partners?—a survey study of healthcare professionals’ perceptions

Abstract

Background More knowledge is needed regarding the perceptions of healthcare professionals when encountering empowered patients and informal caregivers in clinical settings. This study aimed to investigate healthcare professionals’ attitudes towards and experiences of working with empowered patients and informal caregivers, and perception of workplace support in these situations. Methods A multi-centre web survey was conducted using a non-probability sampling of both primary and specialized healthcare professionals across Sweden. A total of 279 healthcare professionals completed the survey. Data was analysed using descriptive statistics and Thematic analysis. Results Most respondents perceived empowered patients and informal caregivers as positive and had to some extent experience of learning new knowledge and skills from them. However, few respondents stated that these experiences were regularly followed-up at their workplace. Potentially negative consequences such as increased inequality and additional workload were, however, mentioned. Patients’ engagement in the development of clinical workplaces was seen as positive by the respondents, but few had own experience of such engagement and considered it difficult to be achieved . Conclusion Overall positive attitudes of healthcare professionals are a fundamental prerequisite to the transition of the healthcare system recognizing empowered patients and informal caregivers as partners.

Balancing feeling ‘prepared’ without feeling ‘devoured’: A qualitative study of self‐care from the perspective of self‐empowered persons living with Parkinson's disease in Sweden

“…35 One of the researchers (S. R.) carries a dual perspective as she has PD herself, has conducted self-tracking 36 and been part of developing frameworks for patients' self-empowerment. 8,12 We are, therefore, aware that there could be bias in the analysis, however, we have mitigated this risk by having another researcher conduct the preliminary analysis. Additionally, we felt the value added from having the perspective of someone with PD in each step of the study outweighed the challenges.…”

“…Patient empowerment is generally understood as healthcare professionals (HCPs) guiding patients in (re)gaining control over their health resulting in literature and interventions aimed at helping HCPs empower patients through facilitating self‐care. However, self‐empowered patients may also take action of their own accord to improve their self‐care independently of healthcare (some because they feel they have no choice 12 ), and can thereby improve their abilities and confidence 12 . Despite the individual nature of self‐care and the burden of responsibility placed on patients, literature mostly explores self‐care from a provider point of view, rather than from the person carrying out the self‐care 13 .…”

“…However, self‐empowered patients may also take action of their own accord to improve their self‐care independently of healthcare (some because they feel they have no choice 12 ), and can thereby improve their abilities and confidence. 12 Despite the individual nature of self‐care and the burden of responsibility placed on patients, literature mostly explores self‐care from a provider point of view, rather than from the person carrying out the self‐care. 13 For example, a study among heart failure patients defines self‐care as ‘a concept that encompasses a set of health behaviors associated with improved patient outcomes (…) [including] medication taking, exercise, diet, weight measurement, symptom recognition and response and fluid management’.…”

Informal care: the indispensable pillar of care for complex patients

“…However, patients desire the presence of another living person by their side, someone who tends to them not just as a professional but as a fellow human being. The concept of comprehensive patient care is challenging to envision without the essential element of human care -a seemingly simple, yet technologically irreplaceable, form of support (3). Today, a rising challenge lies in informal care.…”