Providing confusion: The need for education not information in chronic care

Butterworth, Kevin; Allam, Omnia; Gray, Alex; Butterworth, Heather

doi:10.1177/1460458212445500

Cited by 15 publications

(13 citation statements)

References 12 publications

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“…6 Chronic conditions, however, require a very different model for healthcare, one that is based more on patients’ self-management and patient education. 7,8…”

Section: Introductionmentioning

confidence: 99%

Patients are doing it for themselves: A survey on disease-specific knowledge acquisition among people with Parkinson’s disease in Sweden

Riggare

Höglund

Forsberg³

et al. 2017

Health Informatics J

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Effective self-management is key to living well with Parkinson's disease and one important aspect is diseasespecific knowledge. This article explores how people with Parkinson's disease in Sweden (1) acquire diseasespecific knowledge and (2) use Parkinson's disease-related healthcare. Data were collected through an online survey, which had 346 respondents (16-87 years old, median age: 68 years, 51% male; time since diagnosis: 0-31 years, median time: 7 years). Our results show that disease-specific knowledge is mainly found online, especially for women with Parkinson's disease and people with Parkinson's disease of working age, that most people with Parkinson's disease in Sweden see their neurologist for 1 h or less per year and only one in two people with Parkinson's disease has regular contact with other Parkinson's disease-related healthcare professionals. We also find that people with Parkinson's disease reporting higher levels of specific knowledge also are more likely to be satisfied with the amount of time they get with their neurologist, regardless of the amount of time.

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“…6 Chronic conditions, however, require a very different model for healthcare, one that is based more on patients’ self-management and patient education. 7,8…”

Section: Introductionmentioning

confidence: 99%

Patients are doing it for themselves: A survey on disease-specific knowledge acquisition among people with Parkinson’s disease in Sweden

Riggare

Höglund

Forsberg³

et al. 2017

Health Informatics J

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“…In addition to information provision, therefore, there may be a need for education, advice, counseling, and so on. Recent examples of studies illustrating this point relate to information provision for chronically sick people [14], and information on good nutrition for the general public [15].…”

Section: Is Information Enough?mentioning

confidence: 99%

Being Fluent and Keeping Looking

Bawden

2014

Communications in Computer and Information Science

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Abstract. The complexities of the many concepts and models around information literacy are considered, and some personal views given as to how they may best be clarified, both theoretically and practically. A slightly adapted idea of the concept of information fluency can serve as a main general purpose for the promotion of information literacy, expressed as a more specific meta-model for the prevailing technological environment, and as still more specific components for a particular context. The focus of this relatively stable general formulation is on understanding, rather than skills or competences. It can incorporate the need for education, advice and counseling, as well as information provision, and with domain-specific literacies, as well as supporting personal information literacy.

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“…The need for services to support patient self-care and patient education has been emphasized for patients with chronic conditions [ 1 , 2 ]. While people with chronic conditions may spend many hours in care, the majority of their time is spent in self-care.…”

Section: Introductionmentioning

confidence: 99%

Co-Designing an eHealth Service for the Co-Care of Parkinson Disease: Explorative Study of Values and Challenges

et al. 2018

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BackgroundThe need for services to support patient self-care and patient education has been emphasized for patients with chronic conditions. People with chronic conditions may spend many hours per year in health and social care services, but the majority of time is spent in self-care. This has implications in how health care is best organized. The term co-care specifically stresses the combination of health care professionals’ and patients’ resources, supported by appropriate (digital) tools for information exchange, to achieve the best possible health outcomes for patients. Developers of electronic health (eHealth) services need to consider both parties’ specific needs for the service to be successful. Research on participants’ experiences of participating in co-design sessions is scarce.ObjectiveThe aim of this study was to describe different stakeholders’ (people with chronic conditions, health care professionals, and facilitators) overall experiences of participating in co-design workshops aimed at designing an eHealth service for co-care for Parkinson disease, with a particular focus on the perceptions of values and challenges of co-design as well as improvement suggestions.MethodsWe conducted 4 half-day co-design workshops with 7 people with Parkinson disease and 9 health care professionals. Data were collected during the workshop series using formative evaluations with participants and facilitators after each workshop, researchers’ diary notes throughout the co-design process, and a Web-based questionnaire after the final workshop. Quantitative data from the questionnaire were analyzed using descriptive statistics. Qualitative data were triangulated and analyzed inductively using qualitative content analysis.ResultsQuantitative ratings showed that most participants had a positive general experience of the co-design workshops. Qualitative analysis resulted in 6 categories and 30 subcategories describing respondents’ perceptions of the values and challenges of co-design and their improvement suggestions. The categories concerned (1) desire for more stakeholder variation; (2) imbalance in the collaboration between stakeholders; (3) time investment and commitment paradox; (4) desire for both flexibility and guidance; (5) relevant workshop content, but concerns about goal achievement; and (6) hopes and doubts about future care.ConclusionsBased on the identified values and challenges, some paradoxical experiences were revealed, including (1) a desire to involve more stakeholders in co-design, while preferring to work in separate groups; (2) a desire for more preparation and discussions, while the required time investment was a concern; and (3) the experience that co-design is valuable for improving care, while there are doubts about the realization of co-care in practice. The value of co-design is not mainly about creating new services; it is about improving current practices to shape better care. The choice of methods needs to be adjusted to the stakeholder group and context, which will influence how they exper...

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Providing confusion: The need for education not information in chronic care

Cited by 15 publications

References 12 publications

Patients are doing it for themselves: A survey on disease-specific knowledge acquisition among people with Parkinson’s disease in Sweden

Patients are doing it for themselves: A survey on disease-specific knowledge acquisition among people with Parkinson’s disease in Sweden

Being Fluent and Keeping Looking

Co-Designing an eHealth Service for the Co-Care of Parkinson Disease: Explorative Study of Values and Challenges

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