Making sense of patient expertise

Heldal, Frode; Tjora, Aksel

doi:10.1057/sth.2008.17

Cited by 16 publications

(8 citation statements)

References 22 publications

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“…Patients are supposed to gain support, and they often do, but an IHCA can also increase suffering and uncertainty. By identifying these challenges, we hope to shed more light on the reasons that studies of IHCA use show that about 30% of patients with access to IHCAs do not use them (Gustafson et al, 2002 ; Patten et al, 2007 ; Ruland et al, 2007 ). Our conclusion is that the development and implementation of IHCAs into the homes of patients suffering from cancer has benefits, but also limitations for some patients.…”

Section: Discussionmentioning

confidence: 99%

“…Patients are no longer regarded as passive recipients of treatment, care and information, but rather as active and informed knowledge-seeking agents. Many patients gain an expertise in their illness, seeking to manage their illness by developing knowledge relevant to maintaining health and countering sickness (Fox, Ward, & O'Rourke 2005 ; Heldal & Tjora, 2009 ; Shaw & Baker, 2004 ; Tjora, 2008 ). The trend towards becoming active, expert patients is reinforced by healthcare reforms in many countries that encourage patients to be active communicators and participants in own care and treatment (Epstein, Fiscella, Lesser, & Stange, 2010 ; Pasientrettighetsloven, 2001 ; “Patients’ Bill of Rights”, 1998 ).…”

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confidence: 99%

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Cancer patients’ experiences of using an Interactive Health Communication Application (IHCA)

Grimsbø

Engelsrud

Ruland

et al. 2012

International Journal of Qualitative Studies on Health and Well

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Interactive Health Communication Applications (IHCAs) are increasingly used in health care. Studies document that IHCAs provide patients with knowledge and social support, enhance self- efficacy and can improve behavioural and clinical outcomes. However, research exploring patients’ experiences of using IHCAs has been scarce. The aim of this study was to explore cancer patients’ perspectives and experiences related to the use of an IHCA called WebChoice in their homes. Qualitative interviews were conducted with infrequent, medium and frequent IHCA users—six women and four men with breast and prostate cancer. The interviews were transcribed and analyzed inspired by interactionistic perspectives. We found that some patients’ perceived WebChoice as a “friend,” others as a “stranger.” Access to WebChoice stimulated particularly high frequency users to position themselves as “information seeking agents,” assuming an active patient role. However, to position oneself as an “active patient” was ambiguous and emotional. Feelings of “calmness”, “normalization of symptoms”, feelings of “being part of a community”, feeling “upset” and “vulnerable”, as well as “feeling supported” were identified. Interaction with WebChoice implied for some users an increased focus on illness. Our findings indicate that the interaction between patients and an IHCA such as WebChoice occurs in a variety of ways, some of which are ambivalent or conflicting. Particularly for frequent and medium frequency users, it offers support, but may at the same time reinforce an element of uncertainty in their life. Such insights should be taken into consideration in the future development of IHCAs in healthcare in general and in particular for implementation into patients’ private sphere.

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Section: Discussionmentioning

confidence: 99%

mentioning

confidence: 99%

Cancer patients’ experiences of using an Interactive Health Communication Application (IHCA)

Grimsbø

Engelsrud

Ruland

et al. 2012

International Journal of Qualitative Studies on Health and Well

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“…In this regard, the research highlights the fatigue of home-care workers in making sense retrospectively of their professional experience ( Heldal and Tjora, 2009 ). As reported by O’Connell (2003) , making sense implies reaching an understanding that was not clear before.…”

Section: Discussionmentioning

confidence: 99%

Home-Care Workers’ Representations of Their Role and Competences: A Diaphanous Profession

2020

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Because of the gradual aging of the population, hospital facilities for socio-sanitary care of the elderly are quite scarce relative to the very high number of elderly people present in the country. This has pushed a high number of families to privately hire home-care workers. The scientific literature gives a picture of the psycho-physical risks that this type of profession is exposed to; however, there is still a need for a more systemic reflection with regard to representations about their role and competences. The aim of the present study is to outline the representations of the role and the skills it requires from home-care workers’ point of view. We reconstructed how home-care workers perceive and define the profession, and understand the necessary skills required from their point of view. Our results show that the professional profile of home-care workers still remains poorly defined and that professionals themselves struggle to find value and recognition, and to articulate what the skill set they develop is formed of.

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“…The care professionals, who had been expected to be the expert in the relationship, shifted power toward the lay participant, the user. The patient became an “expert patient”, 37 being the group member who was most skilled and competent in ICT system use.…”

Section: Discussionmentioning

confidence: 99%

Web-based collaboration in individual care planning challenges the user and the provider roles – toward a power transition in caring relationships

Bjerkan¹,

Vatne²,

Hollingen³

2014

JMDH

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Background and objectiveThe Individual Care Plan (ICP) was introduced in Norway to meet new statutory requirements for user participation in health care planning, incorporating multidisciplinary and cross-sector collaboration. A web-based solution (electronic ICP [e-ICP]) was used to support the planning and documentation. The aim of this study was to investigate how web-based collaboration challenged user and professional roles.MethodsData were obtained from 15 semistructured interviews with users and eight with care professionals, and from two focus-group interviews with eight care professionals in total. The data were analyzed using systematic text condensation in a stepwise analysis model.ResultsUsers and care professionals took either a proactive or a reluctant role in e-ICP collaboration. Where both user and care professionals were proactive, the pairing helped to ensure that the planning worked well; so did pairings of proactive care professionals and reluctant users. Proactive users paired with reluctant care professionals also made care planning work, thanks to the availability of information and the users’ own capacity or willingness to conduct the planning. Where both parties were reluctant, no planning activities occurred.ConclusionUse of the e-ICP challenged the user–professional relationship. In some cases, a power transition took place in the care process, which led to patient empowerment. This knowledge might be used to develop a new understanding of how role function can be challenged when users and care professionals have equal access to health care documentation and planning tools.

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Making sense of patient expertise

Cited by 16 publications

References 22 publications

Cancer patients’ experiences of using an Interactive Health Communication Application (IHCA)

Cancer patients’ experiences of using an Interactive Health Communication Application (IHCA)

Home-Care Workers’ Representations of Their Role and Competences: A Diaphanous Profession

Web-based collaboration in individual care planning challenges the user and the provider roles – toward a power transition in caring relationships

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Making sense of patient expertise

Cited by 16 publications

References 22 publications

Cancer patients’ experiences of using an Interactive Health Communication Application (IHCA)

Cancer patients’ experiences of using an Interactive Health Communication Application (IHCA)

Home-Care Workers’ Representations of Their Role and Competences: A Diaphanous Profession

Web-based collaboration in individual care planning challenges the user and the provider roles &ndash; toward a power transition in caring relationships

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Web-based collaboration in individual care planning challenges the user and the provider roles – toward a power transition in caring relationships