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Larsson, I., Nyman, C., Svedberg, P., Nygren, J. M. & Carlsson, I.-M. (2018). Children and young people’s participation in developing interventions in health and well-being: a scoping review. BMC Health Services Research, 18(1), Article ID 507.
Open this publication in new window or tab >>Children and young people’s participation in developing interventions in health and well-being: a scoping review
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2018 (English)In: BMC Health Services Research, ISSN 1472-6963, E-ISSN 1472-6963, Vol. 18, no 1, article id 507Article, review/survey (Refereed) Published
Abstract [en]

Background: Greater interest is being shown in participatory approaches, especially in research on interventions that concern children and young people’s health and well-being. Although participatory approaches have user involvement in common, they differ in terms of the explicit guidance on how to actually involve and engage children and young people in health research. The aim of this scoping review was to systematically map recent research involving children and young people in the development of interventions targeting issues of health and well-being.

Methods: An interpretative scoping literature review based on: a scientific literature search in (health and social science) databases, reference lists, a manual search in key journals and contact with existing networks was conducted. A total of 4458 references were identified through the literature search, of which 41 studies published between 2000 and 2017 were included in the review. The target population was children and young people under 25 years old. Level of participation was categorized according to Shier’s Pathways to Participation Model.

Results: The review showed that participatory approaches were most often used in the development of interventions in school settings and in community and healthcare settings and on issues concerning support in lifestyle or in managing illness or disease. The level of participation varied from children and young people taking part just as active informants, through stages of greater participation both in quantitative and qualitative terms, to children and young people becoming an active agent involved as a co-researcher where the research process was shaped by views of a higher level of mutuality. Most of the studies were categorised at a medium level and only three studies were judged to involve the children and young people at the highest level.

Conclusions: This scoping review showed that work remains in enabling children and young people to influence the development of interventions targeting health and well-being. In relation to level of sustainability in the interventions, it is relevant that goals, strategies and processes are formulated by those who can gain from the interventions. Participatory approaches aiming for a higher level of participation where children and young people work together with the researchers in partnerships are thus warranted. © The Author(s). 2018

Place, publisher, year, edition, pages
London: BioMed Central, 2018
Keywords
Children, Intervention, Participatory approach, Scoping review, User involvement, Young people
National Category
Social Work
Identifiers
urn:nbn:se:hh:diva-37426 (URN)10.1186/s12913-018-3219-2 (DOI)29954392 (PubMedID)
Available from: 2018-06-30 Created: 2018-06-30 Last updated: 2018-07-02Bibliographically approved
Carlsson, I.-M., Nygren, J. M. & Svedberg, P. (2018). Patient participation, a prequisite for care: A grounded theory study of healthcare professionals’ perceptions of what participation means in a paediatric care context. Nursing Open, 5(1), 45-52
Open this publication in new window or tab >>Patient participation, a prequisite for care: A grounded theory study of healthcare professionals’ perceptions of what participation means in a paediatric care context
2018 (English)In: Nursing Open, E-ISSN 2054-1058, Vol. 5, no 1, p. 45-52Article in journal (Refereed) Published
Abstract [en]

Aims

To explore healthcare professionals’ perceptions of what patient participation means in a paediatric care context.

Design

A qualitative explorative design with grounded theory.

Methods

Fifteen healthcare professionals who worked in paediatric care settings were either interviewed or asked open-ended questions in a survey, during December 2015–May 2016. Grounded theory was used as a method.

Results

The study results provide a theoretical conceptualization of what patient participation meant for healthcare professionals in paediatric care and how participation was enabled. The core category “participation a prerequisite for care” emerged as the main finding explaining the concept as ethical, practical and integrated in the care givers way of working. However, the concept was implicit in the organization. Four additional categories illustrated the healthcare professionals’ different strategies used to enhance patient participation; “meeting each child where the child is,” “building a relationship with the child,” “showing respect for each individual child” and “making the most of the moment.” © 2017 The Authors. Nursing Open published by John Wiley & Sons Ltd

Place, publisher, year, edition, pages
Chichester: Wiley-Blackwell Publishing Inc., 2018
Keywords
Children, grounded theory, healthcare professionals, patient participation, paediatric care
National Category
Nursing
Identifiers
urn:nbn:se:hh:diva-35150 (URN)10.1002/nop2.106 (DOI)
Projects
Hälsa och hållbar uppväxt
Note

Funding: This study was supported with partial funding from the Research Environment the Centre of Welfare, Health and Sports at Halmstad University.

Available from: 2017-10-05 Created: 2017-10-05 Last updated: 2018-01-19Bibliographically approved
Svedberg, P. & Nygren, J. M. (2018). Patientdelaktighet och medverkan hos barn och unga (1ed.). In: Ann Catrine Eldh (Ed.), Delaktighet och patientmedverkan: (pp. 59-104). Lund: Studentlitteratur AB
Open this publication in new window or tab >>Patientdelaktighet och medverkan hos barn och unga
2018 (Swedish)In: Delaktighet och patientmedverkan / [ed] Ann Catrine Eldh, Lund: Studentlitteratur AB, 2018, 1, p. 59-104Chapter in book (Other academic)
Place, publisher, year, edition, pages
Lund: Studentlitteratur AB, 2018 Edition: 1
Keywords
Delaktighet, Patientmedverkan
National Category
Health Care Service and Management, Health Policy and Services and Health Economy Nursing
Identifiers
urn:nbn:se:hh:diva-37007 (URN)978-91-44-11329-6 (ISBN)
Available from: 2018-06-12 Created: 2018-06-12 Last updated: 2018-06-13Bibliographically approved
Schön, U.-k., Grim, K., Wallin, L., Rosenberg, D. & Svedberg, P. (2018). Psychiatric service staff perceptions of implementing a shared decision-making tool: a process evaluation study. International Journal of Qualitative Studies on Health and Well-being, 13(1), Article ID 1421352.
Open this publication in new window or tab >>Psychiatric service staff perceptions of implementing a shared decision-making tool: a process evaluation study
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2018 (English)In: International Journal of Qualitative Studies on Health and Well-being, ISSN 1748-2623, E-ISSN 1748-2631, Vol. 13, no 1, article id 1421352Article in journal (Refereed) Published
Abstract [en]

Purpose: Shared decision making, SDM, in psychiatric services, supports users to experience a greater sense of involvement in treatment, self-efficacy, autonomy and reduced coercion. Decision tools adapted to the needs of users have the potential to support SDM and restructure how users and staff work together to arrive at shared decisions.

The aim of this study was to describe and analyse the implementation process of an SDM intervention for users of psychiatric services in Sweden. 

Method: The implementation was studied through a process evaluation utilizing both quantitative and qualitative methods. In designing the process evaluation for the intervention, three evaluation components were emphasized: contextual factors, implementation issues and mechanisms of impact.

Results: The study addresses critical implementation issues related to decision-making authority, the perceived decision-making ability of users and the readiness of the service to increase influence and participation. It also emphasizes the importance of facilitation, as well as suggesting contextual adaptations that may be relevant for the local organizations.

Conclusion: The results indicate that staff perceived the decision support tool as user-friendly and useful in supporting participation in decision-making, and suggest that such concrete supports to participation can be a factor in implementation if adequate attention is paid to organizational contexts and structures. © 2018 The Author(s).

Place, publisher, year, edition, pages
Abingdon: Taylor & Francis, 2018
Keywords
Shared decision making, psychiatric services, decision support tool, implementation, process evaluation
National Category
Health Sciences
Identifiers
urn:nbn:se:hh:diva-37006 (URN)10.1080/17482631.2017.1421352 (DOI)000424831900001 ()29405889 (PubMedID)2-s2.0-85045243442 (Scopus ID)
Funder
Forte, Swedish Research Council for Health, Working Life and Welfare
Available from: 2018-06-12 Created: 2018-06-12 Last updated: 2018-06-13Bibliographically approved
Grim, K., Rosenberg, D., Svedberg, P. & Schön, U.-K. (2017). Development- and testing of a web-based decision support for users and health professionals in psychiatric services. In: ENMESH: Groningen 2017: Abstractbook. Paper presented at ENMESH, Groningen, Netherlands, October 5-7, 2017 (pp. 48-48).
Open this publication in new window or tab >>Development- and testing of a web-based decision support for users and health professionals in psychiatric services
2017 (English)In: ENMESH: Groningen 2017: Abstractbook, 2017, p. 48-48Conference paper, Poster (with or without abstract) (Refereed)
Abstract [en]

Aim: Shared decision making (SDM) is considered a central component in a recovery-oriented practice. While decision aids are often regarded as an essential component for successfully implementing SDM they are still largely lacking within psychiatric services.

The aim of this study was to utilize a participatory design in order to facilitate the development of a user-generated, web-based decision aid for individuals receiving psychiatric services. The results of this effort as well as the lessons learned during the developmental- and usability processes are reported.

Methods: The participatory design included 4 iterative cycles of development. Various qualitative methods for data collection were employed with potential end users who participated as informants in focus group interviews and individual interviews, and as usability and pilot testers.

Results: Interviewing and testing identified usability problems which led to refinements making the subsequent prototypes increasingly user friendly and relevant, and which. In each phase of the development process, feedback from potential end-users provided indispensable guidance in the formation of a decision aid for strengthening the position of users by building on an interactive web based environment.

Conclusions: The decision aid which resulted from this process has the potential to strengthen service users’ experience of self-efficacy and control as well as giving staff access to user knowledge and preferences. Studies employing participatory models focusing on usability have potential to significantly contribute to developing and implementing tools that reflect user perspectives.

Keywords
Shared decision making, Decision Aid, Participatory Design, SDM
National Category
Nursing
Identifiers
urn:nbn:se:hh:diva-35088 (URN)
Conference
ENMESH, Groningen, Netherlands, October 5-7, 2017
Available from: 2017-09-29 Created: 2017-09-29 Last updated: 2017-10-09Bibliographically approved
Grim, K., Rosenberg, D., Svedberg, P. & Schön, U.-K. (2017). Development and Usability Testing of a Web-Based Decision Support for Users and Health Professionals in Psychiatric Services. Psychiatric rehabilitation journal, 40(3), 293-302
Open this publication in new window or tab >>Development and Usability Testing of a Web-Based Decision Support for Users and Health Professionals in Psychiatric Services
2017 (English)In: Psychiatric rehabilitation journal, ISSN 1095-158X, E-ISSN 1559-3126, Vol. 40, no 3, p. 293-302Article in journal (Refereed) Published
Abstract [en]

Objective: Shared decision making (SMD) related to treatment and rehabilitation is considered a central component in recovery-oriented practice. Although decision aids are regarded as an essential component for successfully implementing SDM, these aids are often lacking within psychiatric services. The aim of this study was to use a participatory design to facilitate the development of a user-generated, web-based decision aid for individuals receiving psychiatric services. The results of this effort as well as the lessons learned during the development and usability processes are reported.

Method: The participatory design included 4 iterative cycles of development. Various qualitative methods for data collection were used with potential end users participating as informants in focus group and individual interviews and as usability and pilot testers.

Results: Interviewing and testing identified usability problems that then led to refinements and making the subsequent prototypes increasingly user-friendly and relevant. In each phase of the process, feedback from potential end-users provided guidance in developing the formation of the web-based decision aid that strengthens the position of users by integrating access to information regarding alternative supports, interactivity between staff and users, and user preferences as a continual focus in the tool.

Conclusions and implications for practice: This web-based decision aid has the potential to strengthen service users' experience of self-efficacy and control as well as provide staff access to user knowledge and preferences. Studies employing participatory models focusing on usability have potential to significantly contribute to the development and implementation of tools that reflect user perspectives. © 2017 APA, all rights reserved.

Place, publisher, year, edition, pages
Washington, DC: American Psychological Association (APA), 2017
Keywords
shared decision making, psychiatric, participation
National Category
Health Sciences Nursing
Identifiers
urn:nbn:se:hh:diva-33660 (URN)10.1037/prj0000278 (DOI)28737415 (PubMedID)2-s2.0-85025153836 (Scopus ID)
Available from: 2017-04-03 Created: 2017-04-03 Last updated: 2017-10-10Bibliographically approved
Wärnestål, P., Svedberg, P., Lindberg, S. & Nygren, J. M. (2017). Effects of Using Child Personas in the Development of a Digital Peer Support Service for Childhood Cancer Survivors. Journal of Medical Internet Research, 19(5), Article ID e161.
Open this publication in new window or tab >>Effects of Using Child Personas in the Development of a Digital Peer Support Service for Childhood Cancer Survivors
2017 (English)In: Journal of Medical Internet Research, ISSN 1438-8871, E-ISSN 1438-8871, Vol. 19, no 5, article id e161Article in journal (Refereed) Published
Abstract [en]

BACKGROUND: Peer support services have the potential to support children who survive cancer by handling the physical, mental, and social challenges associated with survival and return to everyday life. Involving the children themselves in the design process allows for adapting services to authentic user behaviors and goals. As there are several challenges that put critical requirements on a user-centered design process, we developed a design method based on personas adapted to the particular needs of children that promotes health and handles a sensitive design context.

OBJECTIVE: The purpose of this study was to evaluate the effects of using child personas in the development of a digital peer support service for childhood cancer survivors.

METHODS: The user group's needs and behaviors were characterized based on cohort data and literature, focus group interviews with childhood cancer survivors (n=15, 8-12 years), stakeholder interviews with health care professionals and parents (n=13), user interviews, and observations. Data were interpreted and explained together with childhood cancer survivors (n=5) in three explorative design workshops and a validation workshop with children (n=7).

RESULTS: We present findings and insights on how to codesign child personas in the context of developing digital peer support services with childhood cancer survivors. The work resulted in three primary personas that model the behaviors, attitudes, and goals of three user archetypes tailored for developing health-promoting services in this particular use context. Additionally, we also report on the effects of using these personas in the design of a digital peer support service called Give Me a Break.

CONCLUSIONS: By applying our progressive steps of data collection and analysis, we arrive at authentic child-personas that were successfully used to design and develop health-promoting services for children in vulnerable life stages. The child-personas serve as effective collaboration and communication aids for both internal and external purposes.

Place, publisher, year, edition, pages
Toronto: J M I R Publications, Inc., 2017
Keywords
cancer, childhood, participation, peer, service design, survivor, user experience
National Category
Health Sciences
Identifiers
urn:nbn:se:hh:diva-35033 (URN)10.2196/jmir.7175 (DOI)28526663 (PubMedID)2-s2.0-85019932388 (Scopus ID)
Available from: 2017-09-19 Created: 2017-09-19 Last updated: 2017-11-29Bibliographically approved
Lindberg, S., Svedberg, P., Bergquist, M. & Nygren, J. M. (2017). Evaluating Digital Peer Support for Children Cured from Cancer. International Journal of Human-Computer Interaction, 33(8), 664-676
Open this publication in new window or tab >>Evaluating Digital Peer Support for Children Cured from Cancer
2017 (English)In: International Journal of Human-Computer Interaction, ISSN 1044-7318, E-ISSN 1532-7590, Vol. 33, no 8, p. 664-676Article in journal (Refereed) Published
Abstract [en]

This article describes a case study of the challenges that emerged from a formative evaluation process with the purpose of evaluating a digital peer support (DPS) service for children between 8 and 12 cured from cancer. The evaluation of DPS for children is particularly challenging. While the literature on evaluation with children is extensive, challenges such as risk assessment that become prevalent in the evaluation of DPS are not highlighted. This case study analyzes how the DPS service was evaluated over the course of two usability tests, a two-week diary study, a focus group interview, and a survey. Challenges relating to ethics, trust, risk assessment, and recruitment emerged during the evaluation process. We identify key strategies to handle these challenges: progression, proxies, and reflection. Performing a multistage evaluation process with progressing sensitivity allowed control of some of the complexities of the context in order to balance the degree of the children’s involvement with the degree of sensitivity. © 2017 Taylor & Francis Group, LLC

Place, publisher, year, edition, pages
New York, NY: Taylor & Francis, 2017
Keywords
evaluation, digital peer support, children, participation, case study, strategy
National Category
Human Computer Interaction
Identifiers
urn:nbn:se:hh:diva-34700 (URN)10.1080/10447318.2017.1278892 (DOI)000407146200006 ()2-s2.0-85011298615 (Scopus ID)
Funder
Swedish Research CouncilSwedish Research Council FormasForte, Swedish Research Council for Health, Working Life and WelfareSwedish Childhood Cancer FoundationKnowledge FoundationVINNOVA
Available from: 2017-08-10 Created: 2017-08-10 Last updated: 2018-03-23Bibliographically approved
Wilhsson, M., Svedberg, P., Carlsson, I.-M., Högdin, S. & Nygren, J. (2017). Handling Demands of Success Among Girls and Boys in Primarly School: A Conceptual Model. Journal of School Nursing, 33(4), 316-325
Open this publication in new window or tab >>Handling Demands of Success Among Girls and Boys in Primarly School: A Conceptual Model
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2017 (English)In: Journal of School Nursing, ISSN 1059-8405, E-ISSN 1546-8364, Vol. 33, no 4, p. 316-325Article in journal (Refereed) Published
Abstract [en]

Stress among adolescents in Western societies is becoming an issue of increasing concern, and the global trend of adolescents’ health shows a gradual deterioration that is independent of national differences and increases with age. The aim of this study was to explore the main concern of adolescents and about how they cope with demands in everyday life. Participants were 14–16 years old, and data were collected from three sources. A constructivist grounded theory was used as a method for generating a model of the adolescents’ description of how they cope with demands in their everyday lives. The main concern described by participants in this study was to strive to be successful and to succeed in the present and throughout their lives. We conclude that differences between girls and boys, in terms of coping with demands in their everyday lives, are important to consider in the development of health promotion initiatives targeted at adolescents. © The Author(s) 2016

Place, publisher, year, edition, pages
Thousand Oaks, CA: Sage Publications, 2017
Keywords
adolescents, stress, coping, demand, gender, school nursing
National Category
Nursing
Identifiers
urn:nbn:se:hh:diva-31727 (URN)10.1177/1059840516654743 (DOI)000406074800009 ()27311316 (PubMedID)2-s2.0-85025177566 (Scopus ID)
Note

Funding: municipality of Halmstad, Länsförsäkringar Halland and Ljungbergska foundation

Available from: 2016-08-09 Created: 2016-08-09 Last updated: 2018-03-22Bibliographically approved
Schön, U.-K., Grim, K., Rosenberg, D. & Svedberg, P. (2017). Interactivity in Shared Decision Making in Swedish mental health services; A process evaluation of a tool to support user participation. In: ENMESH: Groningen 2017: Abstractbook. Paper presented at ENMESH, Groningen, Netherlands, October 5-7, 2017 (pp. 127-127).
Open this publication in new window or tab >>Interactivity in Shared Decision Making in Swedish mental health services; A process evaluation of a tool to support user participation
2017 (English)In: ENMESH: Groningen 2017: Abstractbook, 2017, p. 127-127Conference paper, Oral presentation with published abstract (Refereed)
Abstract [en]

The purpose of the study was to explore aspects of implementing an SDM intervention which featured an interactive digital decision tool, designed for patients with severe mental illness using community mental health services in Sweden. A process evaluation design was selected in order to investigate actual obstacles and possibilities for a structured intervention to facilitate participation in decision making. The design utilized in the study (Moore et al. 2015) included collecting data focused on three identified evaluation components; Context, Implementation and Mechanism of impact.

The results illustrate both facilitating factors and barriers to implementing SDM. Facilitating factors included staff assertions that SDM was most appropriate for formal decisions such as care planning, assessments and planning at admission and discharge from services. Another facilitating factor was the use of the digital decision tool, which enabled interactive communication between staff and users, thereby supporting the user to be informed and prepared in decisions.

A contextual barrier was found to be the lack of a common agenda for concretely increasing user participation in the program. SDM was rather a voluntary activity shaped by each staff member in accordance with his or her judgment, experience and attitude. Another barrier concerned the decision making capacity of both staff and users. While staff sometimes felt that they did not have formal power regarding treatment planning decisions, they also expressed doubt as to the patient's willingness and ability to participate in decisions. Confidence in patients' decision-making capacity and their ability to integrate information was generally low.

Keywords
Implementation, Process Evaluation, SDM
National Category
Health Sciences Nursing
Identifiers
urn:nbn:se:hh:diva-35087 (URN)
Conference
ENMESH, Groningen, Netherlands, October 5-7, 2017
Available from: 2017-09-29 Created: 2017-09-29 Last updated: 2017-10-09Bibliographically approved
Organisations
Identifiers
ORCID iD: ORCID iD iconorcid.org/0000-0003-4438-6673

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