Connecting one’s own illness story to the illness experiences of others on a website—An evaluation study using the think aloud method

Breuning, Martina; Schäfer-Fauth, Lisa; Lucius-Hoene, Gabriele; Holmberg, Christine

doi:10.1016/j.pec.2019.08.014

Cited by 11 publications

(5 citation statements)

References 32 publications

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“…For example, in chronic obstructive pulmonary disease, low oxygen levels may directly affect the brain [ 57 ]. Or, more generally, physical illness can lead to fatigue and the subjective feeling of “not thinking well” [ 58 ]. It may also be that increased severity of disease has led to a decrease in leisure activities, exercise, sleep, or functional independence, which have protective effects on cognition [ 59 ].…”

Section: Discussionmentioning

confidence: 99%

Self-Reported Cognitive Function in Persons with Nonneurological Chronic Diseases: A Systematic Review

Cuevas

Danesh

Henneghan

2022

Journal of Aging Research

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Background. Globally, one in three adults has a chronic condition. Many chronic diseases that are not neurological in nature (e.g., diabetes and heart failure) are increasingly associated with cognitive symptoms. However, the instruments used to assess cognitive symptoms in those with nonneurologic chronic illness are heterogeneous, and questions remain as to how cognitive symptoms may be related to demographic and clinical outcome variables, neurocognitive test performance, and other patient-reported outcomes. In this review, we describe associations among self-reported cognitive function, cognitive performance, and additional patient-reported outcomes as well as how cognitive symptoms are measured in nonneurologic chronic illness. Method. Multiple databases (PubMed, Medline, CINAHL, PsycInfo, EMBASE, SCOPUS, the Cochrane Library, and Academic Search Complete) were searched for studies from 1990 to 2020 that provided data on self-reported cognitive symptoms in those with nonneurological chronic conditions. Initial search yielded 304 articles, of which 32 met inclusion criteria. Quality assessment was conducted using the Critical Appraisal Skills Programme. Results. Thirty-two total studies were included: twenty cross-sectional, 10 longitudinal, and 2 randomized controlled trials. The tools used to assess self-reported cognitive function in the studies were heterogeneous: 28 unique tools were used. Thirty studies examined associations among self-reported cognitive function and other patient-reported outcomes. In 19 there were significant associations. Six studies showed no significant associations between neuropsychological tests and self-reported cognitive function; another 6 studies found a significant association. Conclusion. Tools to assess cognitive symptoms were heterogeneous. In most studies, self-reported cognitive symptoms were not correlated with neuropsychological test results, but the majority of studies found a strong association between self-reported cognitive function and other patient-reported outcomes. Implications. Consensus on measuring cognitive symptoms would facilitate cross-study comparisons and facilitate scientific progress in those with nonneurological chronic conditions. Based on these results, there is a need to establish a standardized approach for self-reported cognitive function measurement in patients with nonneurologic chronic illness.

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Section: Discussionmentioning

confidence: 99%

Self-Reported Cognitive Function in Persons with Nonneurological Chronic Diseases: A Systematic Review

Cuevas

Danesh

Henneghan

2022

Journal of Aging Research

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“…In CTAs, participants are asked to verbalize their feelings and emotions directly while interacting with a (new) technology [36,37]. Through this, the "black box" of emotional and cognitive processes as well as reactions can be observed and evaluated; recall problems can potentially be minimized [38,39]. Since the early 1990s, CTA has been used in humancomputer interaction, and today, it is also used in the participatory design of technologies in health care [31,39].…”

Section: Methodsmentioning

confidence: 99%

“…Through this, the "black box" of emotional and cognitive processes as well as reactions can be observed and evaluated; recall problems can potentially be minimized [38,39]. Since the early 1990s, CTA has been used in humancomputer interaction, and today, it is also used in the participatory design of technologies in health care [31,39]. From user-based methods, CTA is considered one of the "gold standards" [40].…”

Section: Methodsmentioning

confidence: 99%

Participatory Design of an Electronic Medical Record for Paediatric Palliative Care: A Think-Aloud Study with Nurses and Physicians

et al. 2021

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Background: Electronic medical records (EMRs) offer a promising approach to mapping and documenting the complex information gathered in paediatric palliative care (PPC). However, if they are not well developed, poorly implemented EMRs have unintended consequences that may cause harm to patients. One approach to preventing such harm is the involvement of users in the participatory design to ensure user acceptance and patient safety. Therefore, the aim of this study is to evaluate the acceptance of a novel patient chart module (PCM) as part of an EMR from the perspective of potential users in PPC and to involve these professionals in the design process. Methods: A qualitative observational study with N = 16 PPC professionals (n = 10 nurses, n = 6 physicians) was conducted, including concurrent think aloud (CTA) and semi-structured interviews. A structured content analysis based on the Unified Theory of Acceptance and Use of Technology was applied. Results: The results can be summarized in terms of general observations, performance expectancy, effort expectancy and facilitating conditions, all of which are likely to have a positive influence on acceptance of the PCM from the user perspective in the context of PPC. Conclusions: The involvement of users in the development of EMRs is important for meeting the requirements in PPC. Further software adaptations are necessary to implement these requirements.

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“…The publication of real patient narratives in DIPEx follows the HON criteria (Health on the Net Code) and as a freely accessible resource, it forms an important support for patients, relatives, clinicians in training as well as teachers in the health professions and for research. Studies could show that patient narratives can have an impact on the individual experience of illness, but also on health policy, and on affected individuals reconsidering their own approach to illness, as when reading the German DIPEx website [ 25 , 56 , 57 , 58 ]. Drewniak, Glässel, Hodel, and Biller-Andorno [ 59 ] were able to show that access to individual experience is perceived as relevant support and can positively influence the empowerment of patients regarding disease management.…”

Section: Four Examples Of Designs Of Research Relationships and Parti...mentioning

confidence: 99%

“What Do You Need? What Are You Experiencing?” Relationship Building and Power Dynamics in Participatory Research Projects: Critical Self-Reflections of Researchers

Arnold

Becker

Böttger

et al. 2022

IJERPH

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Participatory approaches create opportunities for cooperation, building relationships, gaining knowledge, rethinking, and eventually changing power structures. From an international perspective, the article looks at the historical development of different participatory approaches in which building relationships and managing the balance of power between persons engaged in participatory research are central. The authors present and critically reflect on four research projects to show how they understood and implemented participatory research in different ways and what they have learned from their respective experiences. The “PaSuMi” project worked in the context of addiction prevention with migrants and provides a glimpse into different contexts of participatory research. The initiator of the study “Back into life—with a power wheelchair” works with post-stroke individuals who use the assistive device in community mobility and reflects on the shifting and intertwining roles of participants. In the research project “Workshops for implementation of expanded community nursing”, new professional roles for nurses in community nursing were developed; here limitations to participation and ways to deal with them are illustrated. Finally, the “DIPEx” project deals with challenges of enabling participation of persons with multiple sclerosis via narrative interviews on the experience of health and illness. All examples underline the necessity of a permanent reflection on relationships and power dynamics in participatory research processes.

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Connecting one’s own illness story to the illness experiences of others on a website—An evaluation study using the think aloud method

Cited by 11 publications

References 32 publications

Self-Reported Cognitive Function in Persons with Nonneurological Chronic Diseases: A Systematic Review

Self-Reported Cognitive Function in Persons with Nonneurological Chronic Diseases: A Systematic Review

Participatory Design of an Electronic Medical Record for Paediatric Palliative Care: A Think-Aloud Study with Nurses and Physicians

“What Do You Need? What Are You Experiencing?” Relationship Building and Power Dynamics in Participatory Research Projects: Critical Self-Reflections of Researchers

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