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Gilljam, B.-M., Arvidsson, S., Nygren, J. M. & Svedberg, P. (2020). 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, 29(1-2), 107-118
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
2020 (English)In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 29, no 1-2, p. 107-118Article in journal (Refereed) Published
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, 2020
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)2-s2.0-85074055575 (Scopus ID)
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: 2019-12-17Bibliographically approved
Sjöberg, C., Carlsson, I.-M., Källstrand Eriksson, J., Svedberg, P. & Nygren, J. M. (2020). Creating a shielding place for children with leukaemia during sedation for intrathecal chemotherapy: A grounded theory study. European Journal of Oncology Nursing, 44, Article ID 101711.
Open this publication in new window or tab >>Creating a shielding place for children with leukaemia during sedation for intrathecal chemotherapy: A grounded theory study
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2020 (English)In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 44, article id 101711Article in journal (Refereed) In press
Abstract [en]

Purpose: Childhood cancer invades the child's daily life and has a strong influence on their living conditions and lifestyle. The treatment is an unpleasant experience and the children often perceive the treatment as worse than the actual disease. The aim of the present study was thus to explore the process of how healthcare professionals improved care for children undergoing sedation for intrathecal chemotherapy.

Method: A constructivist grounded theory approach was applied and qualitative interviews with paediatricians (n = 2), anaesthetists (n = 2), paediatric nurses (n = 3) and nurse anaesthetists (n = 5).

Results: The theory of creating a shielding place emerged and conceptualized the pattern of behavior of healthcare professionals throughout the procedure of sedation for intrathecal chemotherapy for pediatric leukaemia. The theory explains the core category ‘shielding’ and the process of how healthcare professionals developed strategies to resolve their main concern: a striving to reduce discomfort and suffering induced by the procedure and the treatment. These strategies, used throughout the procedure, were; de-dramatizing, de-exposing and minimizing trespassing.

Conclusions: The theory of creating a shielding place offers a greater understanding of how healthcare professionals included the child's perspective in their work and thereby enabled a more sensitive and supportive care that had an impact on both quality of care and patient safety. The results from the study contributes with theoretical knowledge that can be used for developing evidence-based care guidelines for the procedure of sedating a child with leukaemia for intrathecal chemotherapy. © 2019 Published by Elsevier Ltd.

Place, publisher, year, edition, pages
Oxford: Elsevier, 2020
Keywords
Caring, Chemotherapy, Children, Grounded theory, Healthcare professionals, Leukaemia, Person-centered care, Quality of care
National Category
Nursing
Identifiers
urn:nbn:se:hh:diva-41286 (URN)10.1016/j.ejon.2019.101711 (DOI)2-s2.0-85076826444 (Scopus ID)
Funder
Swedish Childhood Cancer Foundation
Note

Other funder: Region Halland Sweden

Available from: 2019-12-20 Created: 2019-12-20 Last updated: 2020-01-21
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. 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
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 23-26, 2019. Pediatric Blood & Cancer, 66(S4), S122-S122, Article ID PPO18 SIOP19-1183.
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)In: Pediatric Blood & Cancer, ISSN 1545-5009, E-ISSN 1545-5017, Vol. 66, no S4, p. S122-S122, article id PPO18 SIOP19-1183Article in journal, Meeting abstract (Refereed) Published
Abstract [en]

Background/Objectives:

Participation in healthcare is one of the most important components in management of children’s disease. eHealth services that are adapted to the needs of children have the potential to reorganize how children and professionals work together. The digital interactive communication tool Sisom, was developed to give children in pediatric oncology care “a voice". However, the implementation of eHealth services, such as Sisom, in daily practice is rarely being investigated. The objective of this study was to explore the process and effects of implementing Sisom at four pediatric care centers in Sweden.

Design/Methods:

A process and effect evaluation design was used to investigate the implementation of Sisom in a clinical context at four pediatric care centers in Sweden. In total, 46 children, age 6- 13 years, participated and most of them had a cancer diagnosis. The children used Sisom at two occasions during 6 months. Following the use of Sisom, a printed report formed the basis for a forthcoming dialogue between professionals, children and their parents.

Results:

Key factors for successful implementation of Sisom was; i) alignment of the solution with values and goals of the organization, ii) professional’s beliefs in the usefulness and usability of the solution, and iii) professional’s willingness to apply changes in their professional roles promoted by the solution. Sisom directed healthcarecommunication from the parents’ voices toward the child’s voice and made children’s needs and preferences explicitly visible in decision-making.Sisom was experienced, by the children, as a user-friendly tool through which they could find ways to express themselves and share information with their parents and healthcare professionals.

Conclusions:

The results show how healthcare deliverycan be reorganized towards a child-centered approach, and the importance of implementing an eHealth service to support restructuring ofways of working with children’s participation to succeed with this.

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)10.1002/pbc.27989 (DOI)000488458001098 ()31568621 (PubMedID)2-s2.0-85072767768 (Scopus ID)
Conference
51th Congress of the International Society of Paediatric Oncology (SIOP), Lyon, France, October 23-26, 2019
Available from: 2019-10-28 Created: 2019-10-28 Last updated: 2019-12-10Bibliographically approved
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
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 e14493.
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, 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: 2019-12-10Bibliographically approved
Nygren, J. M., Svedberg, P., Lynn Radlick, R., Przedpelska, S. & Gammon, D. (2019). Digitally enhanced mentoring for immigrant youth social capital: Protocol for a mixed-methods pilot study and randomized controlled trial. JMIR Research Protocols
Open this publication in new window or tab >>Digitally enhanced mentoring for immigrant youth social capital: Protocol for a mixed-methods pilot study and randomized controlled trial
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2019 (English)In: JMIR Research Protocols, ISSN 1929-0748, E-ISSN 1929-0748Article in journal (Refereed) Accepted
Place, publisher, year, edition, pages
Toronto: J M I R Publications, Inc., 2019
National Category
Public Health, Global Health, Social Medicine and Epidemiology
Identifiers
urn:nbn:se:hh:diva-41263 (URN)10.2196/16472 (DOI)
Available from: 2019-12-16 Created: 2019-12-16 Last updated: 2019-12-20
Ahlborg, M., Svedberg, P., Nyholm, M., Morgan, A. & Nygren, J. M. (2019). Into the realm of social capital for adolescents: A latent profile analysis. PLoS ONE, 14(2), Article ID e0212564.
Open this publication in new window or tab >>Into the realm of social capital for adolescents: A latent profile analysis
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2019 (English)In: PLoS ONE, ISSN 1932-6203, E-ISSN 1932-6203, Vol. 14, no 2, article id e0212564Article in journal (Refereed) Published
Abstract [en]

Background

Recent reports of increasing prevalence of frequent health complaints and mental health problems among adolescents call for directing more attention on determinants of adolescent health. The relationship between health and social capital has gained increased attention since the early 2000’s and research at review level confirms the importance of social capital for health outcomes, despite methodological heterogeneity. The aim of this study was to identify distinct profiles of family, school and peer social capital in a nationally representative sample of adolescents and to explore health outcomes in those profiles.

Method

Cross-sectional data from the Swedish Health Behaviour of School-aged Children 2013/14 was used for this study. The analytical sample consisted of 7,804 adolescents aged 11-, 13- and 15-years. Items representing sense of belonging and emotional support were assessed in three contexts; family, school and among peers. Latent profile analyses (LPA) were run to determine social capital profiles. Health outcomes included frequent health complaints and life satisfaction, while socioeconomic status and genders were included as predictors.

Results

The results show that five distinct profiles best represent the data for 11- and 15-year olds, while a four-profile model was optimal for 13-year olds. Some profiles were recurrent between age groups but unique profiles were also found. Health outcomes were significantly different between profiles depending on levels of social capital in the different contexts.

Conclusions

This study provides novel insight into how social capital co-occurs among adolescents within the contexts of family, school and peers and how this translates into differences in health outcomes. The national representativeness of the sample increases the implications of the results and contributes to meaningful insights that help explain the interactions of social capital in multiple contexts, complementing what is previously known about the relationship with adolescent health. © 2019 Ahlborg et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

Place, publisher, year, edition, pages
San Francisco, CA: Public Library of Science, 2019
National Category
Public Health, Global Health, Social Medicine and Epidemiology
Identifiers
urn:nbn:se:hh:diva-39476 (URN)10.1371/journal.pone.0212564 (DOI)000459330800040 ()30789947 (PubMedID)2-s2.0-85061940871 (Scopus ID)
Funder
Knowledge Foundation
Available from: 2019-05-26 Created: 2019-05-26 Last updated: 2019-08-01Bibliographically approved
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/0000-0003-4438-6673

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