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Redesign and Validation of Sisom, an Interactive Assessment and Communication Tool for Children With Cancer
Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI), Health and Nursing.ORCID iD: 0000-0001-5647-086X
Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI), Health and Nursing. Region Halland, Halmstad, Sweden.ORCID iD: 0000-0003-0711-3457
Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI), Health and Nursing.ORCID iD: 0000-0002-3576-2393
The Centre for Shared Decision Making and Collaborative Care Research (CSDM), Oslo University Hospital, Oslo, Norway & University of Oslo, Oslo, Norway.ORCID iD: 0000-0001-6521-4884
Show others and affiliations
2016 (English)In: JMIR mhealth and uhealth, E-ISSN 2291-5222, Vol. 4, no 2, article id e76Article in journal (Refereed) Published
Abstract [en]

BACKGROUND: Children 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.

OBJECTIVE: To redesign Sisom for use on mobile devices and to validate and adapt it for use in a Swedish population of children with cancer.

METHODS: A 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.

RESULTS: Children, 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 assessmentitems 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.

CONCLUSIONS: Overall, 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.

Place, publisher, year, edition, pages
Toronto: JMIR Publications Inc. , 2016. Vol. 4, no 2, article id e76
Keywords [en]
cancer, children, communication, mobile app, participation, validation
National Category
Other Health Sciences Nursing Human Computer Interaction
Identifiers
URN: urn:nbn:se:hh:diva-31387DOI: 10.2196/mhealth.5715ISI: 000381182400044PubMedID: 27343004OAI: oai:DiVA.org:hh-31387DiVA, id: diva2:942665
Funder
Swedish Childhood Cancer FoundationKnowledge Foundation
Note

The research was financially supported by the Swedish Childhood Cancer Foundation, the Knowledge Foundation, Region Halland, and the Center of Research on Welfare, Health and Sport at Halmstad University.

Available from: 2016-06-26 Created: 2016-06-26 Last updated: 2020-02-05Bibliographically approved
In thesis
1. Barns delaktighet i pediatrisk vård – perspektiv, erfarenheter och möjligheter till förändring utifrån barn med långvarig sjukdom
Open this publication in new window or tab >>Barns delaktighet i pediatrisk vård – perspektiv, erfarenheter och möjligheter till förändring utifrån barn med långvarig sjukdom
2020 (Swedish)Doctoral thesis, comprehensive summary (Other academic)
Abstract [sv]

Bakgrund: Det senaste decenniet har patientens delaktighet fått en allt större uppmärksamhet i forskning, riktlinjer, lagar och klinisk vård. Men många barn känner sig inte delaktiga i sin vård. Vårdpersonal och föräldrar talar ofta över huvudet på barn och ofta förstår barnen inte vad de vuxna pratar om. Barn har också svårt att själva uttrycka sig verbalt i vårdsituationer. Det saknas studier som undersöker långvarigt sjuka barns perspektiv på främjande faktorer för barns delaktighet i vården. Det saknas också användarvänliga svenska validerade verktyg och frågeformulär där barn självständigt kan uttrycka sig och interagera med vårdpersonal, för att mäta barns delaktighet och för att tillämpa delaktighet praktiskt i vården. Både patientlagen och lagen om Förenta nationernas barnkonvention deklarerar att alla barn har rätt att vara delaktiga i sin vård. Denna rättighet behöver överföras till praktisk handling och både vårdpersonal och hälso- och sjukvården som organisation behöver utvecklas.

Syfte: Det övergripande syftet med avhandlingen var att utforska barns perspektiv på delaktighet i sin vård, hos barn med långvarig sjukdom och att utveckla och validera verktyg och instrument för att stödja pediatriska verksamheter i tillämpning av barns delaktighet.

Metod: I delstudie I användes en konstruktivistisk grundad teori för att utforska barns perspektiv, erfarenheter och önskemål om delaktighet samt främjande faktorer för att öka barns delaktighet. Datainsamlingen skedde genom intervjuer och fokusgrupper med barn med reumatisk sjukdom. I delstudie II användes en konvergent parallell mixad metod för att undersöka om det digitala kommunikationsverktyg Sisom påverkade delaktigheten hos barn med cancer under läkarbesök. I delstudie III användes en participatorisk design där det digitala kommunikationsverktyg Sisom vidareutvecklades och validerades i en svensk kontext. Metoden som användes var iterativ utvärdering genom low- and high-fidelity med friska barn och barn med cancer som deltagare. I delstudie IV användes en instrumentutvecklings design för att utveckla, validera och psykometriskt testa ett frågeformulär om barns delaktighet i vården. I studien deltog friska barn och barn med olika långvariga sjukdomar i utvecklingsarbetet.

Resultat: I delstudie I framkom kärnkategorin Att släppa rädsla och osäkerhet öppnar för tillit och delaktighet med Att omges av trygga relationer och miljöer och Att bli stärkt och att få stöd för att kunna vara delaktig som tillhörande koder från den fokuserade kodningen. Dessa koder framkom från med barn med långvarig sjukdom som främjande faktorer för barns delaktighet i vården. Det kvalitativa resultatet i delstudie II visade att barns delaktighet ökade vid användning av det digitala kommunikationsverktyget Sisom. Det kvantitativa resultatet visade att läkarna tilltalade barnen oftare och att barnen talade något mer. I delstudie III utvecklades Sisom, tillsammans med barn, till ett användarvänligt digitalt verktyg på svenska. Verktyget utvecklades från problem fokuserat till salutogenetiskt och påståenden ändrades till frågor. Frågeformuläret (ChiPaC) som utvecklades i delstudie IV resulterade i ett frågeformulär där barn själva kan uttrycka sin uppfattning av delaktighet. Statistiska beräkningar resulterade i en faktoranalys med en fyra-faktorlösning, där 12 frågor inkluderades som förklarade 59,47 % av variansen. De fyra faktorerna benämndes: Att få vara med, Att lita på personalen, Att ta kontroll och Att förstå information. Intra Class Correlation visade stark och måttlig samstämmighet mellan sex av frågorna, svag samstämmighet mellan fem frågor och otillräcklig på en. Chronbach´s alpha beräknades till 0,76. 

Konklusion:  Främjande faktorer för barns delaktighet i sin egen vård vid långvarig sjukdom är trygga relationer och miljöer samt att få stöd i att kunna vara delaktiga. Det digitala kommunikationsverktyget Sisom möjliggör för barn 6–12 år med långvarig sjukdom att självständigt uttrycka sina uppfattningar om hur de mår och sina upplevelser kring sin situation. Sisom främjar också barns delaktighet i form av att de blir lyssnade till, får uttrycka sina åsikter och synpunkter samt får dessa beaktade i samtal med vårdpersonal. Frågeformuläret ChiPaC visade tillfredställande psykometriska egenskaper för att kunna användas vid utvärdering av barns delaktighet i vården. Sisom och ChiPaC utvecklades från barns perspektiv med barn med långvarig sjukdom och friska barn som medaktörer.  Denna avhandling bidrar även till kunskap om hur barn med långvarig sjukdom kan engageras som medaktörer i forskning.

Abstract [en]

Background: In the past decade, patient participation has received increasing attention in research, care guidelines, laws and clinical care. Promotion of children´s rights to participate in things that involve them can be expected to intensify as the Children's Convention becomes law in Sweden. Despite this, many children do not feel involved. Often healthcare professionals and parents communicate above the heads of the children who therefore do not understand what the adults are talking about. Children may also find it difficult to express themselves verbally in such care situations. There is a lack of studies examining factors that promote children's participation in care from the perspectives of children with long-term diseases. There is also a lack of user-friendly validated tools and instruments in Swedish that enable children to express themselves and interact with healthcare professionals independently. Such tools and instruments are needed to translate practical involvement in the care situation and to enable the follow-up of children's experience of their participation in care. 

Aim: The overall aim of this dissertation was to explore the perspectives of children with long-term diseases regarding the participation in their own care, and to develop tools and instruments that support pediatric activities in the implementation of children's participation.

Methods: In study I, a constructivist grounded theory was used to explore children's perspectives, experiences and preferences for participation in healthcare situations among children with rheumatic diseases to promote their participation in pediatric healthcare. The data collection was conducted through interviews and focus groups with children diagnosed with rheumatic diseases. In study II, a convergent parallel mixed method was used to investigate whether the digital communication tool Sisom affected the participation of children diagnosed with cancer during appointments with pediatricians. In study III, a participatory design was used to develop and evaluate the digital communication tool Sisom in a Swedish context. The method used was iterative evaluation by low- and high-fidelity with healthy children and children with cancer. In study IV, an instrument development design was used to develop, validate and psychometrically test a questionnaire on children's participation in care. In the study, healthy children and children with various long-term diseases participated in the development work.

Results: In study I promoting factors for children's participation emerged through the core category Releasing fear and uncertainty opens up for confidence and participation with Surrounded by a sense of security and comfort and Be strengthened and supported to be involved as codes. The qualitative result in study II showed that children's participation increased with the use of the digital communication tool Sisom. The quantitative results showed that the physicians spoke directly to the children more often and the amount time the children spoke increased slightly. In study III, Sisom was developed together with children into a user-friendly digital tool for Swedish conditions. The tool was developed from mainly problem-focused questions into preferentially salutogenic asked questions. The questionnaire (ChiPaC) in study was developed into a new questionnaire where children can express their own perception of participation. Statistical calculations resulted in a factor analysis with a four-factor solution, which included 12 questions that explained 59.47% of the variance. The four factors were named: To be included, To trust professionals, To take control and To understand information. Intra Class Correlation showed strong and moderate agreement between six of the questions, weak agreement between five questions and insufficient agreement in one question. Chronbach's alpha was calculated to be 0.76 for the entire instrument.

Conclusion: Factors that promote the participation of children with long-term diseases in their own care are secure and trustful relationships and environments, as well as receiving support to be able to participate. The digital communication tool Sisom enables children 6-12 years of age with long-term diseases to independently express their views on how they feel and their experiences about their situation. Sisom also promotes children's participation because they are being listened to, permitted to express their views and opinions, and their views are taken into account in discussions with health care professionals. The ChiPaC questionnaire showed satisfactory psychometric properties to be used in evaluating children's participation in care. Sisom and ChiPaC were developed from a child´s perspective with children with long-term diseases and healthy children as co-actors. Thereby this dissertation also contributes knowledge about how children with long-term diseases can be involved as co-actors in research.

Place, publisher, year, edition, pages
Halmstad: Halmstad University Press, 2020. p. 131
Series
Halmstad University Dissertations ; 64
Keywords
Child, e-health services, long-term diseases, patient participation, pediatric care, Barn, patientdelaktighet, långvarig sjukdom, e-hälsotjänster, pediatrisk vård
National Category
Nursing
Identifiers
urn:nbn:se:hh:diva-41606 (URN)978-91-88749-36-9 (ISBN)978-91-88749-37-6 (ISBN)
Public defence
2020-03-06, Baertling, Hus J, Kristian IV:s väg 3, Halmstad, 10:00 (Swedish)
Opponent
Supervisors
Available from: 2020-02-13 Created: 2020-02-05 Last updated: 2020-02-13Bibliographically approved

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Arvidsson, SusannGilljam, Britt-MariNygren, JensRuland, Cornelia MariaNordby-Bøe, TrudeSvedberg, Petra

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