Proceedings of Designing Self-care for Everyday Life. Workshop in conjunction with NordiCHI 2014, 27th October (original) (raw)
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Designing self-care for everyday life
Proceedings of the 8th Nordic Conference on Human-Computer Interaction: Fun, Fast, Foundational, 2014
Managing chronic conditions can be challenging. People in such conditions, and the people around them, have to: deal with symptoms, adapt to the resulting disability, manage emotions, and change habits to keep the condition under control. Self-care technologies have the potential to support self-care and mediate the relationship between patients (and caregivers) and the condition. However, these technologies often disregard the complexity of the settings in which they are used and fail to become integrated in everyday life. In this workshop we will discuss how to design self-care technologies that are in harmony with people's everyday life. Therefore, we invite designers, researchers and practitioners to participate in a full-day workshop in which we will reflect on each other's work, and do a design exercise with patients and caregivers.
‘Living Well with Parkinson’s’: evaluation of a programme to promote self-management
Journal of Nursing and Healthcare of Chronic Illness, 2011
2 0 1 1 ) Journal of Nursing and Healthcare of Chronic Illness 3, 222-233 'Living Well with Parkinson's': evaluation of a programme to promote self-management Aim. To evaluate an innovative self-management programme for people with Parkinson's disease from the users' perspectives. Background. The increasing burden associated with health services for people with chronic conditions has led to an emphasis on self-management. Benefits of selfmanagement programmes for people with chronic conditions have been demonstrated. There is, however, a dearth of information for content and implementation of self-management programmes for individuals with Parkinson's disease.
Self-care Technologies in HCI: Trends, Tensions, and Opportunities
ACM Transactions on Computer-Human Interaction
Many studies show that self-care technologies can support patients with chronic conditions and their carers in understanding the ill body and increasing control of their condition. However, many of these studies have largely privileged a medical perspective and thus overlooked how patients and carers integrate self-care into their daily lives and mediate their conditions through technology. In this review we focus on how patients and carers use and experience self-care technology through a Human Computer Interaction (HCI) lens. We analyse studies of self-care published in key HCI journals and conferences using the Grounded Theory Literature Review Method and identify research trends and design-tensions. We then draw out opportunities for advancing HCI research in self-care, namely: focusing further on patients’ everyday life experience; considering existing collaborations in self-care; and increasing the influence on medical research and practice around self-care technology.
Nursing & Health Sciences, 2020
Persons with Parkinson's disease and their care partners want support from health care to develop the skills to handle everyday life with the long-term condition. Earlier findings indicate that participants of the self-management program Swedish National Parkinson School experience several benefits of the program. The purpose of this qualitative observational study was to explore if participants had implemented the strategies of self-monitoring included in the program and use them to communicate health care status and needs in clinical encounters. Data were collected 3 to 15 months after participation in the program and analyzed using constant comparative analysis. Three categories were evident: "Self-observation in everyday life," "Self-care activities to promote health," and "Managing emotional impact of Parkinson's Disease." Categories were linked together in a core category that highlight the use of self-management strategies described by participants during clinical encounters. Results confirmed that persons with Parkinson's disease and care partners use the techniques of self-observation in their everyday lives. Observations of effects in clinical care can be a valuable approach to evaluate the outcomes educational interventions and their benefits for individuals and health care.
Using a personalized medicine perspective, ECOTECH aims at developing new tools and methodologies to characterize and overcome at-risk situations for patients with Parkinson's disease in their daily life activity. With the cooperation of a multidisciplinary research group, patient situations have been studied in real life context in both hospital environment and home and community settings Gait, in particular, has been assessed by combining data from an onboard sensor system, ethnographic observations and self-confrontation interviews. We discuss the results of this study with respect to the so-called activity analysis framework which is considered both as a resource for the design of new technologies and as a technology of design in the healthcare domain. In particular, we consider the potential for innovations regarding here, with the integration of onboard sensors, 1) the design of training 2) the design of artefact and work formats 3) the design of new mechanisms for health knowledge generation and validation.
2018
Parkinson disease (PD) is the second most commonly damaging disease of the central nervous system and one of the common causes of inability in the elderly that affects quality of life. Methods: This was a randomized clinical trial study over a 6-month period of 69 patients with PD treated in Imam Reza Hospital in shiraz from April to October 2016. The patients were randomly allocated into experimental (n=34) and control (n=35). Experimental group received self-care training. The de Boe r (1996) quality of life questionnaire in both groups were completed before intervention and after 1, 2-months. The quality of life questionnaire has five subscales s included Parkinson's symptoms, systemic symptoms, emotional functioning, and social function. Cronbach's alpha in all questionnaire subscales s was 0.95, SPSS (version 19) software was used to data analyses and using ANCOVA. Result : 69 patients with Parkinson disease included 36(52.17%) male and 33(47.83%) female enrolled in stu...
Self-management support programs for persons with Parkinson’s disease: An integrative review
Patient Education and Counseling, 2017
To identify the characteristics of self-management programs for persons with Parkinson's disease and the evidence for their effectiveness. Methods An integrative literature review was conducted. Studies describing the provision or outcomes of self-management interventions for persons with Parkinson's disease and published in English were included. Two reviewers independently screened and evaluated articles. Interventions were described and compared, and evidence was presented using The Traffic Lighting system. Results Eighteen interventions were identified, representing a variety of group-and individual-based interventions that differed in structure, components, and outcomes. Notably, 89% were designed specifically for persons with Parkinson's disease and 39% combined self-management support with other therapies. Evidence to support specific self-management programs for persons with Parkinson's disease was limited. However, a moderate quality systematic review and a good quality RCT supported self-management for improving specific domains of quality of life. Conclusions A variety of interventions have been designed to support self-management by persons with Parkinson's disease. More research is needed to identify key active ingredients and determine which programs are most effective. Practice Implications Self-management programs embedded within rehabilitation are promising. Clinicians should ensure programs include goal setting and problem solving and consider the inclusion of caregivers and peer support.
Health Informatics Journal, 2017
People living with Parkinson's disease engage in self-care for most of the time but, two or three times a year, they meet with doctors to re-evaluate the condition and adjust treatment. Patients and (informal) carers participate actively in these encounters, but their engagement might change as new patientcentred technologies are integrated into healthcare infrastructures. Drawing on a qualitative study that used observations and interviews to investigate consultations, and digital ethnography to understand interactions in an online community, we describe how patients and carers living with Parkinson's participate in the diagnosis and treatment decisions, engage in discussions to learn about certain topics, and address inappropriate medication. We contrast their engagement with a review of self-care technologies that support interactions with doctors, to investigate how these artefacts may influence the agency of patients and carers. Finally, we discuss design ideas for improving the participation of patients and carers in technology-mediated scenarios.
Nursing & Health Sciences, 2020
Persons with Parkinson's disease and their care partners want support from health care to develop the skills to handle everyday life with the long-term condition. Earlier findings indicate that participants of the self-management program Swedish National Parkinson School experience several benefits of the program. The purpose of this qualitative observational study was to explore if participants had implemented the strategies of self-monitoring included in the program and use them to communicate health care status and needs in clinical encounters. Data were collected 3 to 15 months after participation in the program and analyzed using constant comparative analysis. Three categories were evident: "Self-observation in everyday life," "Self-care activities to promote health," and "Managing emotional impact of Parkinson's Disease." Categories were linked together in a core category that highlight the use of self-management strategies described by participants during clinical encounters. Results confirmed that persons with Parkinson's disease and care partners use the techniques of self-observation in their everyday lives. Observations of effects in clinical care can be a valuable approach to evaluate the outcomes educational interventions and their benefits for individuals and health care.