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  • 1.
    Arvidsson, Susann
    et al.
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI), Health and Nursing.
    Gilljam, Britt-Mari
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI), Health and Nursing. Region Halland, Halmstad, Sweden.
    Nygren, Jens
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI), Health and Nursing.
    Ruland, Cornelia Maria
    The Centre for Shared Decision Making and Collaborative Care Research (CSDM), Oslo University Hospital, Oslo, Norway & University of Oslo, Oslo, Norway.
    Nordby-Bøe, Trude
    The Centre for Shared Decision Making and Collaborative Care Research (CSDM), Oslo University Hospital, Oslo, Norway.
    Svedberg, Petra
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI), Health and Nursing.
    Redesign and Validation of Sisom, an Interactive Assessment and Communication Tool for Children With Cancer2016In: JMIR mhealth and uhealth, E-ISSN 2291-5222, Vol. 4, no 2, article id e76Article in journal (Refereed)
    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.

  • 2.
    Gilljam, Britt-Mari
    et al.
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI), Health and Nursing.
    Arvidsson, Susann
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI), Health and Nursing.
    Nygren, Jens M.
    Svedberg, Petra
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI), Health and Nursing.
    Child participation in health care (ChiPaC)—Development and psychometric evaluation of a self‐report instrument for children's participation in health care2019In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, p. 1-12Article in journal (Refereed)
    Abstract [en]

    Aims and objectives

    To develop and evaluate the psychometric properties of a self‐report instrument measuring 6‐ to 12‐year‐old children's own experiences of participation in health care.

    Background

    Validated measures to evaluate children's participation in health care can play a critical role in strategic work towards supporting children's participation at an individual level and in working towards quality improvements at an organisational level. There are, however, no available instruments to achieve this.

    Methods

    An instrument development design was used, together with the TRIPOD checklist. Item construction was based on research about children's perspectives on participation in health care and Shier's model for participation. The face and content validity was evaluated by 14 healthy children, 9 paediatric nurses and 8 children with different diseases. The construct validity, internal consistency and stability reliability were evaluated based on data from 138 children visiting a paediatric clinic.

    Results

    The testing of the face and content validity resulted in an instrument with child‐friendly language, additional instructions and visual attractive presentation. The principle component analysis resulted in the four‐factor solution: “To be included,” “To trust professionals,” “To take control,” and “To understand information.” Internal consistency and intraclass correlation coefficients were acceptable.

    Conclusion

    We conclude that the child participation in health care (ChiPaC) instrument has adequate reliability and validity when used to evaluate children's participation in health care. The involvement of children in the development of ChiPaC resulted in a brief, colourful and user‐friendly instrument for use in paediatric health care.

    Relevance to clinical practice

    This new questionnaire, ChiPaC, is adapted for children between 6–12 years measuring participation in health care from a child perspective. ChiPaC can be used in the practical work of supporting individual children's participation in health care as well as in the strategical work towards quality improvements on an organisational level.

    What does this paper contribute to the wider global clinical community?

    • The instrument provides a contribution for the practical implementation of the Convention on the Rights of the Child in health care.
    • The high degree of involvement of children in the development of the instrument resulted in a brief, colourful and user‐friendly instrument that can be used in paediatric health care.
    • The instrument can play a critical role in the practical work of supporting individual children's participation in health care as well as in the strategical work of quality improvement on an organisational level.
  • 3.
    Gilljam, Britt-Mari
    et al.
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI), Health promotion and disease prevention.
    Arvidsson, Susann
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI), Health promotion and disease prevention.
    Nygren, Jens
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI), Health promotion and disease prevention.
    Svedberg, Petra
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI), Health promotion and disease prevention.
    Involving Children with Juvenile Idiopathic Arthritis in Health-Related Research – Why and How?2015In: Annals of the Rheumatic Diseases, ISSN 0003-4967, E-ISSN 1468-2060, Vol. 74, no Suppl. 2, p. 1312-1312Article in journal (Refereed)
    Abstract [en]

    Background: Children with severe Juvenile idiopathic arthritis (JIA) are exposed to care situations and harsh treatments such as intra-articular corticosteroid injections (1). In order for these children to feel confidence, it is important they understand and feel they have control over the situation. To support the wellbeing of these children and their involvement in care, it is important to investigate their views of the care process and their everyday life (2).

    Objectives: The purpose of this study is to describe our experiences of using different activities and techniques during interviews with children with JIA.

    Methods: Children (n=23) from two rheumatic pediatric clinics in Sweden, age 8 - 17, diagnosed with JIA since at least two years were interviewed individually or in focus groups. All interviews focused on experiences and preferences of participating in care situations. Among the younger children, age 8 - 12, we used activities such as sentence completion, to express three wishes, draw and tell, and role-play with Barbie dolls. Among the older ones, age 13 – 17, we used sentence completion, to express three wishes and post-IT tabs for brainstorming and subsequent discussion. During all interviews we used open-ended questions.

    Results: Sentence completion and three wishes were two weak techniques for most of the children regardless of age. The younger children often responded to these techniques with silence or responses like “I don't know”. The older children responded with intense reflection and thinking, and predominately came up with one wish only. Techniques that were powerful in activating discussions were draw and tell and role-play with Barbie dolls for the younger children. Using Post-IT tabs and discussions was a good starter for discussions for the older children in focus groups.

    Conclusions: There is reason to reflect on what techniques researchers use when interviewing children, as the prospects of capturing children's perspectives in research is largely dependent on the researcher's ability to engage children in the interview situation. Different interview methods should be used depending on the age of the informants, the purpose of the investigation, and the capabilities, such as the health status, of the child. In this study, we experienced that the participants ability to express their experiences and preferences can be facilitated with practical techniques, like drawing and role-play with Barbie dolls for younger children and Post-IT tabs for children in older age groups.

    References:

    Bertilsson L. Andersson-Gäre B. Fasth A. Forsblad-d'Elia H. A 5-year prospective population-based study of juvenile chronic arthritis: onset, disease process, and outcome. Scandinavian journal of rheumatology 2012; 41(5): 379-382.

    Coyne I. Hayes E. Gallagher P. Regan G. Giving children a voice: investigation of children's experiences of participation in consultation and decision-making in Irish hospitals. Office of the Minister for Children 2006; 3576.

    Acknowledgements: Thanks to: The Swedish Rheumatic Foundation, Stig Thunes Foundation and Norrbacka Eugenia Foundation.

    Disclosure of Interest: None declared

  • 4.
    Gilljam, Britt-Mari
    et al.
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI).
    Arvidsson, Susann
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI), Health promotion and disease prevention.
    Nygren, Jens
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI), Health promotion and disease prevention.
    Svedberg, Petra
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI), Health promotion and disease prevention.
    Promoting participation in healthcare situations for children with JIA: a grounded theory study2016In: International Journal of Qualitative Studies on Health and Well-being, ISSN 1748-2623, E-ISSN 1748-2631, Vol. 11, article id 30518Article in journal (Refereed)
    Abstract [en]

    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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  • nn-NO
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