Meeting the Burden of Self-management: Qualitative Study Investigating the Empowering Behaviors of Patients and Informal Caregivers

Duncan, Therese Scott; Engström, Jon; Riggare, Sara; Hägglund, Maria; Koch, Sabine

doi:10.2196/39174

Cited by 5 publications

(12 citation statements)

References 30 publications

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“…Only a small proportion of respondents considered their organizations to provide the optimal conditions to involve patients and informal caregivers as well as support the respondents when difficult situations occurred. The questionnaire developed for this study was based on the self-empowering behaviors found by Scott Duncan et al [ 11 ]. Meeting the influencing self-empowering behaviors [ 11 ] showed that our respondents had positive attitudes towards patients (85%) and informal caregivers (83%) sharing their knowledge with other peers as mentors or communicators.…”

Section: Discussionmentioning

confidence: 99%

“…The questionnaire developed for this study was based on the self-empowering behaviors found by Scott Duncan et al [ 11 ]. Meeting the influencing self-empowering behaviors [ 11 ] showed that our respondents had positive attitudes towards patients (85%) and informal caregivers (83%) sharing their knowledge with other peers as mentors or communicators. The respondents had encouraged this to some degree, and it existed some organizational support.…”

Section: Discussionmentioning

confidence: 99%

“…This cross-sectional study had a descriptive design [ 21 ] with a multi-centre web survey conducted in Swedish. Using descriptions of empowering behaviors from a previous study as a guide [ 11 ], a study specific questionnaire was developed by the research team. The survey questions are presented in an additional file [see Additional file 1 ].…”

Section: Methodsmentioning

confidence: 99%

“…These concepts describe patients’ and informal caregivers’ active engagement, however their self-management tasks and healthcare system involvement are further described in a recent study of empowering behaviors of patients and informal caregivers. Here exploratory and influencing activities that patients and informal caregivers perform are characterized [ 11 ]. The exploratory empowering behaviors are labelled as the self-care expert, the knowledge seeker, the academic, the patient researcher, the tracker, the coping-expert , and the exposed and the influencing behaviors as the innovator, the entrepreneur, the communicator, the mentor, the healthcare coordinator, the healthcare partner , and the activist [ 11 ].…”

Section: Introductionmentioning

confidence: 99%

“…Here exploratory and influencing activities that patients and informal caregivers perform are characterized [ 11 ]. The exploratory empowering behaviors are labelled as the self-care expert, the knowledge seeker, the academic, the patient researcher, the tracker, the coping-expert , and the exposed and the influencing behaviors as the innovator, the entrepreneur, the communicator, the mentor, the healthcare coordinator, the healthcare partner , and the activist [ 11 ]. These empowering behaviors have evolved in parallel to the digital transformation in society [ 7 ] and require patients and informal caregivers to be involved and receive feedback.…”

Section: Introductionmentioning

confidence: 99%

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

Duncan

Riggare

Bylund

et al. 2023

BMC Health Serv Res

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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.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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

Duncan

Riggare

Bylund

et al. 2023

BMC Health Serv Res

Self Cite

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Self-Management Support (SMS) in Transition: The Case of Osteoporosis Management Support in a Chinese Hospital

Huang,

Ding

2024

Comput Supported Coop Work

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Self-management has become increasingly important with the growing population living with chronic conditions. Self-Management Support (SMS) provided in healthcare systems is essential for its success. While prior research mainly focuses on Western countries, this paper presents a study of SMS practices for osteoporosis management as part of a Whole Course Management (WCM) program recently implemented in the healthcare system in China, which features a new role called case manager in the hospital dedicated to SMS and related coordination. Based on interviews with 22 participants, including one case manager, two physicians, three nurses, seven patients, and nine caregivers, we highlight the importance of the role of case manager in promoting awareness of osteoporosis and self-management, integrated care coordination, and emotional support. At the same time, it also reveals challenges and promising directions to make SMS more effective, mainly in terms of self-management education, active patient involvement, and coordination among the care network. We ended by reflecting on our findings and discussing implications for SMS and the design of ICTs.

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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

Luckhaus,

Clareborn,

Hägglund

et al. 2024

Health Expectations

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IntroductionParkinson's Disease (PD) is a complex neurodegenerative disease resulting in a wide range of motor and nonmotor symptoms for which the treatment regimen is often complex. People with Parkinson's (PwP) spend time daily on self‐care practices including self‐tracking signs and symptoms or seeking disease‐specific knowledge. Research suggests self‐care interventions yield promising care and health outputs for PwP, yet most research focuses on the provider perspective rather than that of those conducting the self‐care. This study explores the meaning of self‐care, disease‐specific knowledge, and self‐tracking from the perspective of PwP in Sweden.MethodsQualitative data from three data sets were analyzed and compared using qualitative content analysis: one focus group on self‐care (n = 14), one free‐text survey on disease‐specific knowledge (n = 197) and one free‐text survey on self‐tracking (n = 33).FindingsThe analysis resulted in three categories: illness‐related tasks, internal resources and external resources. Illness‐related tasks describe various tasks PwP carry out in self‐care, including lifestyle choices, treatments, and self‐tracking. Internal resources include personal knowledge/skills as well as mindsets which could facilitate or challenge completing these tasks. Finally, external resources include other PwP, literature, clinicians and other sources of disease‐specific knowledge. Self‐care was found to fluctuate between beneficial and burdensome depending on such resources.ConclusionsIn conclusion, self‐care needs to be acknowledged and discussed more often in PD and other complex conditions. Future self‐care interventions should consider self‐tracking and disease‐specific knowledge as well as internal and external resources in their design and implementation.Patient or Public ContributionA researcher with PD was actively involved in all phases of the research: study design, data collection and analysis, and preparing the manuscript.

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Meeting the Burden of Self-management: Qualitative Study Investigating the Empowering Behaviors of Patients and Informal Caregivers

Cited by 5 publications

References 30 publications

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

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

Self-Management Support (SMS) in Transition: The Case of Osteoporosis Management Support in a Chinese Hospital

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

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