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Svedberg, P., Arvidsson, S., Larsson, I., Carlsson, I.-M. & Nygren, J. M. (2019). Barriers and Enablers Affecting Successful Implementation of the Electronic Health Service Sisom: Multicenter Study of Child Participation in Pediatric Care. Journal of Medical Internet Research, 21(11), 1-15, Article ID 14271.
Open this publication in new window or tab >>Barriers and Enablers Affecting Successful Implementation of the Electronic Health Service Sisom: Multicenter Study of Child Participation in Pediatric Care
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2019 (English)In: Journal of Medical Internet Research, ISSN 1438-8871, E-ISSN 1438-8871, Vol. 21, no 11, p. 1-15, article id 14271Article in journal (Refereed) Published
Abstract [en]

BACKGROUND: Children's participation in health care is one of the most important components in the management of their disease. Electronic health (eHealth) services that are adapted to the needs of children have the potential for restructuring how children and professionals work together. Therefore, a digital interactive assessment and communication tool, Sisom, was developed to give children aged between 6 and 12 years a voice in their own health care. However, the implementation of eHealth services such as Sisom in daily practice in pediatric health care is rarely investigated. OBJECTIVE: The aim of this study was to explore the process of implementing Sisom for children in pediatric care in Sweden. More specifically, the study aimed to (1) evaluate whether the implementation strategy was conducted as planned, (2) understand the barriers and facilitators of the implementation strategy in pediatric care settings, (3) gain insight into how professionals work with the specific intervention, and (4) gain insight into the usefulness and effects of the intervention from the professionals' perspectives. METHODS: A process evaluation design was used to study the implementation of Sisom at 4 pediatric care centers in Sweden. An extensive amount of qualitative and quantitative data was collected before, during, and after the intervention through self-report checklists, memos, and interviews with professionals. In total, 46 children, aged between 6 and 13 years, participated. The children used Sisom on two occasions during 6 months. When they used Sisom, a printed report formed the basis for a forthcoming dialogue between professionals, children, and their parents. RESULTS: To our knowledge, this is the first implementation study of an eHealth communication tool aimed at strengthening children's participation in pediatric health care. Key factors for successful implementation were alignment of the solution with the values and goals of the organization, health care professionals' beliefs in the usefulness and usability of the solution, and health care professionals' willingness to change their professional roles guided by the solution. CONCLUSIONS: The results from the study show that it is possible to restructure health care delivery toward a child-centered approach, if there is a willingness and preparedness in the organization to implement an eHealth solution with the aim of restructuring the way of working with children's participation. ©Petra Svedberg, Susann Arvidsson, Ingrid Larsson, Ing-Marie Carlsson, Jens M Nygren.

Place, publisher, year, edition, pages
Toronto: JMIR Publications, Inc., 2019
Keywords
children, eHealth, health care, quality improvement, diffusion of innovation, implementation science
National Category
Nursing Pediatrics Health Care Service and Management, Health Policy and Services and Health Economy
Identifiers
urn:nbn:se:hh:diva-41026 (URN)10.2196/14271 (DOI)000452782500038 ()30533057 (PubMedID)2-s2.0-85074656706 (Scopus ID)
Available from: 2019-11-24 Created: 2019-11-24 Last updated: 2019-11-25Bibliographically approved
Svedberg, P., Arvidsson, S., Larsson, I., Carlsson, I.-M. & Nygren, J. M. (2019). Barriers And Enablers for Successful Implementation of the eHealth Service Sisom for Improved Child Participation in Paediatric Care - A Multi-Centre Study. Paper presented at 51th Congress of the International Society of Paediatric Oncology (SIOP), Lyon, France, October 23-36, 2019. Pediatric Blood & Cancer, 66(S4), S112-S112
Open this publication in new window or tab >>Barriers And Enablers for Successful Implementation of the eHealth Service Sisom for Improved Child Participation in Paediatric Care - A Multi-Centre Study
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2019 In: Pediatric Blood & Cancer, ISSN 1545-5009, E-ISSN 1545-5017, Pediatric blood and cancer, Vol. 66, no S4, p. S112-S112Article in journal (Refereed) Accepted
Place, publisher, year, edition, pages
Hoboken, NJ: John Wiley & Sons, 2019
National Category
Health Care Service and Management, Health Policy and Services and Health Economy
Identifiers
urn:nbn:se:hh:diva-40803 (URN)000488458001098 ()
Conference
51th Congress of the International Society of Paediatric Oncology (SIOP), Lyon, France, October 23-36, 2019
Available from: 2019-10-28 Created: 2019-10-28 Last updated: 2019-10-31
Svedberg, P., Arvidsson, S., Larsson, I., Carlsson, I.-M. & Nygren, J. M. (2019). Barriers And Enablers for Successful Implementation of the eHealth Service Sisom for Improved Child Participation in Paediatric Care - A Multi-Centre Study. In: : . Paper presented at SIOP 2019.
Open this publication in new window or tab >>Barriers And Enablers for Successful Implementation of the eHealth Service Sisom for Improved Child Participation in Paediatric Care - A Multi-Centre Study
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2019 (English)Conference paper, Poster (with or without abstract) (Refereed)
Keywords
eHealth service, participation, child, healthcare
National Category
Nursing
Identifiers
urn:nbn:se:hh:diva-40828 (URN)
Conference
SIOP 2019
Available from: 2019-11-03 Created: 2019-11-03 Last updated: 2019-11-07
Gilljam, B.-M., Arvidsson, S., Nygren, J. M. & Svedberg, P. (2019). Child participation in health care (ChiPaC)—Development and psychometric evaluation of a self‐report instrument for children's participation in health care. Journal of Clinical Nursing, 1-12
Open this publication in new window or tab >>Child participation in health care (ChiPaC)—Development and psychometric evaluation of a self‐report instrument for children's participation in health care
2019 (English)In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, p. 1-12Article in journal (Refereed) Epub ahead of print
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.
Place, publisher, year, edition, pages
Chichester: Wiley-Blackwell, 2019
Keywords
child, healthcare worker, instrument development, patient participation, questionnaire
National Category
Nursing
Identifiers
urn:nbn:se:hh:diva-40776 (URN)10.1111/jocn.15063 (DOI)31531995 (PubMedID)
Note

Funding: The Region Halland (grant number HALLAND‐631071), and the Linnéa and Josef Carlssons foundation (grant number 2016/12).

Available from: 2019-10-22 Created: 2019-10-22 Last updated: 2019-10-23
Vinblad, E., Svedberg, P., Nygren, J. M., Lönn, M., Olsson, E. & Larsson, I. (2019). Children and young people’s experiences of participation in pediatric rehabilitation: a qualitative study. Paper presented at 31st Annual Meeting of the European Academy of Childhood Disability Conference (EACD), Paris, France, May 23-25, 2019. Developmental Medicine & Child Neurology, 61(S2)
Open this publication in new window or tab >>Children and young people’s experiences of participation in pediatric rehabilitation: a qualitative study
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2019 (English)In: Developmental Medicine & Child Neurology, ISSN 0012-1622, E-ISSN 1469-8749, Vol. 61, no S2Article in journal, Meeting abstract (Refereed) Published
Abstract [en]

Introduction: Creating a healthcare system of justice requires a child-centered care where children and young people, regardless of disability, are allowed to participate in their own rehabilitation. The aim of this study was to explore children and young people’s experiences of participation in pediatric rehabilitation.

Patients and methods: The study had a descriptive design with a qualitative content analysis approach. Interviews were conducted with 20 children (6-17 years old, 9 girls and 11 boys) and 8 young people (18-30 years old, 6 women and 2 men) with intellectual disabilities, physical disabilities or autism spectrum disorders.

Results: Three categories emerged that reflected children and young people’s experiences of participation in pediatric rehabilitation: to be included; to be empowered; and to feel supported. To be included meant that children and young people are respected, listened to and involved in shared decision-making. To be empowered comprised autonomy, responsibility and understanding as essential aspects for participation. To feel supported meant that children and young people described their parents as facilitators for enabling participation by supporting communication and being a bridge between child and professionals.

Conclusion: To increase participation, children need support in communication with the healthcare professionals in a way that they feel respected, empowered and able to be included in decisions concerning their own pediatric rehabilitation. This result constitutes an important step in the development of a forthcoming digital communication and decision tool, with the main objective to increase participation, for children with disabilities.

Place, publisher, year, edition, pages
Chichester: , 2019
Keywords
child, participation
National Category
Nursing
Identifiers
urn:nbn:se:hh:diva-39492 (URN)
Conference
31st Annual Meeting of the European Academy of Childhood Disability Conference (EACD), Paris, France, May 23-25, 2019
Note

Conference Poster

Available from: 2019-05-27 Created: 2019-05-27 Last updated: 2019-09-30Bibliographically approved
Teleman, B., Karsson, C., Svedberg, P., Vinblad, E., Larsson, I. & Nygren, J. M. (2019). Co-construction of child personas in the development of a digital communication support system for increased participation in pediatric habilitation. Paper presented at 31st Annual Meeting of the European Academy of Childhood Disability (EACD), Paris, France, May 23-25, 2019. Developmental Medicine & Child Neurology, 61(S2), 17-17
Open this publication in new window or tab >>Co-construction of child personas in the development of a digital communication support system for increased participation in pediatric habilitation
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2019 (English)In: Developmental Medicine & Child Neurology, ISSN 0012-1622, E-ISSN 1469-8749, Vol. 61, no S2, p. 17-17Article in journal, Meeting abstract (Refereed) Published
Abstract [en]

Introduction: Digital communication support systems have great potential to facilitate the provision of child-centered care where children and young people are allowed and enabled to participate in planning and decision-making in their own habilitation. The aim of this study was to co-construct child personas together with children and young adults from pediatric habilitation for the design of a digital communication support system.

Patients and methods: The child, parent and practitioner perspectives on goals, needs and behaviours in relation to participation in pediatric habilitation were characterized based on interviews with 20 children (6-17 years old) and 8 young people (18-30 years old) with intellectual disabilities, physical disabilities or autism spectrum disorders, 17 parents (aged 31-62 years) and 10 practitioners. Data were interpreted and explained together with children from the interviews (n=14) in two explorative design workshops and a validation workshop.

Results: We present findings and insights on how to co-construct child personas in the context of pediatric habilitation. The work resulted in three personas with different priorities that model the behaviors, attitudes, and goals of three user archetypes tailored for developing digital communication support systems in this particular use context.

Conclusion: By applying our progressive steps of data collection and analysis, we arrive at authentic child-personas that are now used to design and develop a digital communication support system for the particular goals, needs and behaviors of children in pediatric habilitation.

Place, publisher, year, edition, pages
Chichester: Wiley-Blackwell Publishing Inc., 2019
Keywords
Co-construction, digital communication tool, participation, personas
National Category
Nursing
Identifiers
urn:nbn:se:hh:diva-39493 (URN)10.1111/dmcn.14244 (DOI)
Conference
31st Annual Meeting of the European Academy of Childhood Disability (EACD), Paris, France, May 23-25, 2019
Note

Oral presentation 37

Available from: 2019-05-27 Created: 2019-05-27 Last updated: 2019-10-02Bibliographically approved
Arnarsson, A., Nygren, J., Nyholm, M., Torsheim, T., Augustine, L., Bjereld, Y., . . . Bendtsen, P. (2019). Cyberbullying and traditional bullying among Nordic adolescents and their impact on life satisfaction. Scandinavian Journal of Public Health, 1-9
Open this publication in new window or tab >>Cyberbullying and traditional bullying among Nordic adolescents and their impact on life satisfaction
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2019 (English)In: Scandinavian Journal of Public Health, ISSN 1403-4948, E-ISSN 1651-1905, p. 1-9Article in journal (Refereed) Epub ahead of print
Abstract [en]

Aims: The aim of this study was to investigate the prevalence of cybervictimization in the six Nordic countries and to assess its overlap with traditional bullying. A further aim was to examine potential associations between life satisfaction, on the one hand, and traditional bullying and cyberbullying on the other. Methods: Analyses were based on data from the 2013⁄2014 Health Behaviour in School-aged Children study. It included 32,210 boys and girls, aged 11, 13, and 15, living in the six Nordic countries. Results: The prevalence of cyberbullying by both pictures and by messages was around 2% in all the Nordic countries except Greenland. There it was considerably higher. The prevalence of being bullied in a traditional manner varied widely by country. For boys, this type of bullying was most frequent in the youngest age group and then decreased steadily in the older age groups. Girls were on average more likely to be cyberbullied. Cyberbullying was more common among 13- and 15-year-olds than 11-year-olds. Higher family affluence was unrelated to the risk of cyberbullying. However, it was related to traditional bullying and combined forms of bullying. Compared with intact families, cybervictimization was commoner among single-parent families and stepfamilies. Adjusting for age, gender, family affluence, and family structure, those subjected to cyberbullying had lower life satisfaction than those who were not bullied. Conclusions: We found relatively little overlap between cyberbullying and traditional bullying, indicating that the two may be separate phenomena stemming from different mechanisms, at least in the Nordic context.

Place, publisher, year, edition, pages
London: Sage Publications, 2019
Keywords
Bullying, cyberbullying, Nordic, adolescents, life satisfaction, family structure, family affluence
National Category
Other Medical Sciences
Identifiers
urn:nbn:se:hh:diva-38833 (URN)10.1177/1403494818817411 (DOI)30672390 (PubMedID)2-s2.0-85060714783 (Scopus ID)
Available from: 2019-02-04 Created: 2019-02-04 Last updated: 2019-02-04
Vinblad, E., Larsson, I., Lönn, M., Olsson, E., Nygren, J. M. & Svedberg, P. (2019). Development of a Digital Decision Support Tool to Aid Participation of Children With Disabilities in Pediatric Rehabilitation Services: Explorative Qualitative Study. JMIR Formative Research, 3(4), Article ID 14493.
Open this publication in new window or tab >>Development of a Digital Decision Support Tool to Aid Participation of Children With Disabilities in Pediatric Rehabilitation Services: Explorative Qualitative Study
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2019 (English)In: JMIR Formative Research, Vol. 3, no 4, article id 14493Article in journal (Refereed) Published
Abstract [en]

Background: Building a health care system in accordance with the rule of law requires child-centered care, where children and young people, regardless of ability, are allowed to participate in visits with their health care professionals. As part of an overall project focusing on developing and implementing a digital decision support tool to increase the participation of children with disabilities in pediatric rehabilitation, this study brings new knowledge as to how this specific patient group views participation.

Objective: The aim of this formative study was to explore the experiences of children and young people with disabilities concerning increasing their participation in the pediatric rehabilitation services.

Methods: The formative study had an explorative design, based on a latent qualitative content analysis with an inductive approach. Interviews were conducted with 20 children (6-17 years) and 8 young people (19-30 years) with disabilities about their experiences of participation in pediatric rehabilitation services.

Results: A total of 3 categories emerged reflecting the participants’ possibilities of participation in the pediatric rehabilitation services: to feel involved, to feel independent, and to work in partnership. To feel involved meant being listened to and being connected, to feel independent meant being admitted and being enabled, and to work in partnership meant being supported and being able to entrust others with the decision making. With the overall theme moving toward empowerment of children in pediatric rehabilitation, a true feeling of participation can be experienced.

Conclusions: The views of children and young people with disabilities are that children should be given the prerequisites for empowerment by being allowed to feel involved and independent as well as to work in partnership to experience true participation in the pediatric rehabilitation services. This finding is essential in the design of a digital decision support tool based on the children’s needs and perspectives. © Elin Vinblad, Ingrid Larsson, Maria Lönn, Emma Olsson, Jens M Nygren, Petra Svedberg. Originally published in JMIR Formative Research (http://formative.jmir.org), 02.10.2019

Place, publisher, year, edition, pages
Toronto: JMIR Publications, 2019
Keywords
child; child care; decision making; eHealth; disabled children; patient participation; rehabilitation; qualitative research
National Category
Other Health Sciences
Identifiers
urn:nbn:se:hh:diva-40708 (URN)10.2196/14493 (DOI)31579015 (PubMedID)
Available from: 2019-10-14 Created: 2019-10-14 Last updated: 2019-10-14
Vinblad, E., Larsson, I., Lönn, M., Olsson, E., Nygren, J. M. & Svedberg, P. (2019). Development of a Digital Decision Support Tool to Aid Participationof Children With Disabilities in Pediatric Rehabilitation Services: Explorative Qualitative Study. JMIR Formative Research, 3(4), Article ID e14493.
Open this publication in new window or tab >>Development of a Digital Decision Support Tool to Aid Participationof Children With Disabilities in Pediatric Rehabilitation Services: Explorative Qualitative Study
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2019 (English)In: JMIR Formative Research, E-ISSN 2561-326X, Vol. 3, no 4, article id e14493Article in journal (Refereed) Published
Abstract [en]

Background: Building a health care system in accordance with the rule of law requires child-centered care, where children andyoung people, regardless of ability, are allowed to participate in visits with their health care professionals. As part of an overallproject focusing on developing and implementing a digital decision support tool to increase the participation of children withdisabilities in pediatric rehabilitation, this study brings new knowledge as to how this specific patient group views participation.

Objective: The aim of this formative study was to explore the experiences of children and young people with disabilities concerning increasing their participation in the pediatric rehabilitation services.

Methods: The formative study had an explorative design, based on a latent qualitative content analysis with an inductive approach. Interviews were conducted with 20 children (6-17 years) and 8 young people (19-30 years) with disabilities about their experiences of participation in pediatric rehabilitation services.

Results: A total of 3 categories emerged reflecting the participants’ possibilities of participation in the pediatric rehabilitation services: to feel involved, to feel independent, and to work in partnership. To feel involved meant being listened to and being connected, to feel independent meant being admitted and being enabled, and to work in partnership meant being supported andbeing able to entrust others with the decision making. With the overall theme moving toward empowerment of children in pediatric rehabilitation, a true feeling of participation can be experienced.

Conclusions: The views of children and young people with disabilities are that children should be given the prerequisites for empowerment by being allowed to feel involved and independent as well as to work in partnership to experience true participation in the pediatric rehabilitation services. This finding is essential in the design of a digital decision support tool based on the children’s needs and perspectives. © Elin Vinblad, Ingrid Larsson, Maria Lönn, Emma Olsson, Jens M Nygren, Petra Svedberg.

Place, publisher, year, edition, pages
Toronto: JMIR Publications, 2019
Keywords
child, child care, decision making, eHealth, disabled children, patient participation, rehabilitation, qualitative research
National Category
Nursing
Identifiers
urn:nbn:se:hh:diva-40881 (URN)10.2196/14493 (DOI)31579015 (PubMedID)2-s2.0-85073394999 (Scopus ID)
Available from: 2019-11-08 Created: 2019-11-08 Last updated: 2019-11-29Bibliographically approved
Arvidsson, S., Aili, K. & Nygren, J. M. (2019). Health-Related Quality of Life among Young Adult Acute Lymphoblastic Leukemia Survivors in Sweden. In: : . Paper presented at 51th Congress of the International Society of Paediatric Oncology (SIOP 2019), Lyon, France, October 23-26, 2019.
Open this publication in new window or tab >>Health-Related Quality of Life among Young Adult Acute Lymphoblastic Leukemia Survivors in Sweden
2019 (English)Conference paper, Poster (with or without abstract) (Refereed)
Keywords
ALL, health-related quality of life, survivors
National Category
Nursing
Identifiers
urn:nbn:se:hh:diva-40996 (URN)000488458003013 ()
Conference
51th Congress of the International Society of Paediatric Oncology (SIOP 2019), Lyon, France, October 23-26, 2019
Available from: 2019-11-20 Created: 2019-11-20 Last updated: 2019-11-20
Projects
Peer support intervention for improved mental health in children [2012-27_Formas]; Halmstad University; Publications
Einberg, E.-L., Nygren, J., Svedberg, P. & Enskär, K. (2016). ‘Through my eyes’: health-promoting factors described by photographs taken by children with experience of cancer treatment. Child Care Health and Development, 42(1), 76-86
Organisations
Identifiers
ORCID iD: ORCID iD iconorcid.org/0000-0002-3576-2393

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