Ethical aspects of children’s perceptions of information-giving in care

Peña, Ana Lucía Noreña; Rojas, Juan Guillermo

doi:10.1177/0969733013484483

Cited by 19 publications

(17 citation statements)

References 33 publications

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“…Butterfield et al, 2005), healthcare and clinical studies (e.g. Kvarnström, 2008;Peña and Rojas, 2014;Schluter et al, 2007;Sharoff, 2008), service settings (e.g. Bitner et al, 1990;Grove and Fisk, 1997;Keaveney, 1995;Petrick et al, 2006), marketing (e.g.…”

Section: Origins and Applicationsmentioning

confidence: 99%

The critical incident technique reappraised

Bott

Tourish

2016

QROM

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Purpose The purpose of this paper is to offer a reconceptualization of the critical incident technique (CIT) and affirm its utility in management and organization studies. Design/methodology/approach Utilizing a case study from a leadership context, the paper applies the CIT to explore various leadership behaviours in the context of nonprofit boards in Canada. Semi-structured critical incident interviews were used to collect behavioural data from 53 participants – board chairs, board directors, and executive directors – from 18 diverse nonprofit organizations in Alberta, Canada. Findings While exploiting the benefits of a typicality of events, in some instances the authors were able to validate aspects of transformational leadership theory, in other instances the authors found that theory falls short in explaining the relationships between organizational actors. The authors argue that the CIT potentially offers the kind of “thick description” that is particularly useful in theory building in the field. Research limitations/implications Drawing on interview material, the authors suggest that incidents can be classified based on frequency of occurrence and their salience to organizational actors, and explore the utility of this distinction for broader theory building purposes. Practical implications Principally, the paper proposes that this method of investigation is under-utilized by organization and management researchers. Given the need for thick description in the field, the authors suggest that the approach outlined generates exceptionally rich data that can illuminate multiple organizational phenomena. Social implications The role of nonprofit boards is of major importance for those organizations and the clients that they serve. This paper shed new light on the leadership dynamics at the top of these organizations and therefore can help to guide improved practice by those in board and senior management positions. Originality/value The CIT is a well-established technique. However, it is timely to revisit it as a core technique in qualitative research and promote its greater use by researchers. In addition, the authors offer a novel view of incidents as typical, atypical, prototypical or archetypal of organizational phenomena that extends the analytical value of the approach in new directions.

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Section: Origins and Applicationsmentioning

confidence: 99%

The critical incident technique reappraised

Bott

Tourish

2016

QROM

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“…Many health care professionals recognize the need to include children in their own care [ 2 , 6 , 7 ]. However, children’s rights for participating is still unsatisfactorily applied in health care [ 8 ] and children’s own needs and preferences are often neglected in health care situations [ 5 , 9 ]. It is thus important to increase health care professionals’ awareness of the benefits of including children in their own health care [ 6 , 10 ].…”

Section: Introductionmentioning

confidence: 99%

Redesign and Validation of Sisom, an Interactive Assessment and Communication Tool for Children With Cancer

Arvidsson¹,

Gilljam²,

Nygren³

et al. 2016

JMIR Mhealth Uhealth

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BackgroundChildren with cancer undergo intensive and long treatment periods that expose them and their families to a number of difficult physical, mental, and social challenges. Empowering children by actively involving them in their care can help them to cope with these challenges. It can, however, be difficult for children to be involved and talk about their illness experiences in a “traditional” conversation with health care professionals, especially for younger children. Sisom (Norwegian acronym “Si det som det er” or “Tell it how it is”) is an interactive computer-based assessment and communication tool to give children (aged 6-12 years) with cancer a “voice” in their care. Because of technological advances and widespread use of mobile devices Sisom had to be redesigned to better meet the needs of children of today.ObjectiveTo redesign Sisom for use on mobile devices and to validate and adapt it for use in a Swedish population of children with cancer.MethodsA user-experience design was used. Content adaptation included forward-backward translation by Swedish and Norwegian translators. Healthy children (n=5), children with experiences of cancer treatment (n=5) and their parents (n=5), and pediatric nurses (n=2) were then involved in culturally adapting Sisom to the Swedish context. The iterative low- and high-fidelity evaluation was supported by a think aloud method, semistructured interviews, and drawings to capture children’s views of Sisom. The redesign and evaluation continued until no further changes or improvements were identified by the participants or the researchers.ResultsChildren, parents, and pediatric nurses offered many suggestions for improvements to the original version in terms of content, aesthetics, and usability of Sisom. The most significant change that emerged through user input was a modification that entailed not using problem-focused statements in the assessment items. The parents and pediatric nurses considered the revised assessment items to be general and less diagnosis specific. The evaluation of aesthetics resulted in brighter colors and more positive and exciting details in the animations. The evaluation of usability included improvements of the verbal instructions on how to navigate in Sisom 2, and also that the answers to assessment items in Sisom 2 should be saved to provide the children with the option to pause and to continue answering the remaining assessment items at a later stage.ConclusionsOverall, this paper describes the process of using user-experience design with children in order to redesign and validate an interactive assessment and communication tool and how the outcomes of this process resulted in a new version, Sisom 2. All participants confirmed the usability and qualities of using the final version. Future research should be directed toward the implementation of Sisom 2 in clinical practice and to evaluate outcomes from individual and organizational levels.

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“…Research shows that the abilities of children to express their needs and wishes in healthcare is restricted, due to their dependence of others (Mårtenson & Fägerskiöld, 2008 ) and a tradition of communication that is focused on healthcare professionals and parents (Butz, Walker, Pulsifer, & Winkelstein, 2007 ; Young, Moffett, Jackson, & McNulty, 2006 ). Consequently, children do not often experience being able to participate and feel neglected in healthcare situations (Coyne & Kirwan, 2012 ; Peña & Rojas, 2013 ), even though they desire to be involved in their own healthcare (Coyne, 2006 ; Lipstein, Muething, Dodds, & Britto, 2013 ). The reasons may be that parents often respond on their children's behalf (Butz et al, 2007 ), and healthcare professionals are unaccustomed to valuing children's own views and lack the tools to implement children's participation (Coyne, 2008 ; Oruche, Downs, Holloway, Draucker, & Aalsma, 2014 ; Ruhe, Wangmo, Badarau, Elger, & Niggli, 2014 ).…”

mentioning

confidence: 99%

Promoting participation in healthcare situations for children with JIA: a grounded theory study

Gilljam

Arvidsson

Nygren

et al. 2016

International Journal of Qualitative Studies on Health and Well

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Children's right to participate in their own healthcare has increasingly become highlighted in national and international research as well as in government regulations. Nevertheless, children's participation in healthcare is unsatisfactorily applied in praxis. There is a growing body of research regarding children's participation, but research from the children's own perspective is scarce. The aim of this study was thus to explore the experiences and preferences for participation in healthcare situations among children with juvenile idiopathic arthritis (JIA) as a foundation for creating strategies to promote their participation in pediatric healthcare. Twenty children, aged 8 to 17 years, with JIA were interviewed individually and in focus groups. In order to increase the children's opportunities to express their own experiences, different interview techniques were used, such as draw-and-tell and role play with dolls. The analysis was conducted with a constructivist grounded theory. The result explores children's perspective of influencing processes promoting their participation in healthcare situations. The core category that emerged was, “Releasing fear and uncertainty opens up for confidence and participation,” and the categories related to the core category are, “surrounded by a sense of security and comfort,” and “strengthened and supported to become involved.” In conclusion, the knowledge gained in this study offers new insights from the perspective of children themselves, and can constitute a valuable contribution to the understanding of necessary conditions for the development of specific interventions that promote participation among children in healthcare situations.

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Ethical aspects of children’s perceptions of information-giving in care

Cited by 19 publications

References 33 publications

The critical incident technique reappraised

The critical incident technique reappraised

Redesign and Validation of Sisom, an Interactive Assessment and Communication Tool for Children With Cancer

Promoting participation in healthcare situations for children with JIA: a grounded theory study

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