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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
Keyword
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
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.

Keyword
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
Keyword
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
Keyword
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
Keyword
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
Keyword
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.

Keyword
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
Nygren, J. M., Lindberg, S., Wärnestål, P. & Svedberg, P. (2017). Involving Children With Cancer in Health Promotive Research: A Case Study Describing Why, What, and How. JMIR Research Protocols, 6(2), Article ID e19.
Open this publication in new window or tab >>Involving Children With Cancer in Health Promotive Research: A Case Study Describing Why, What, and How
2017 (English)In: JMIR Research Protocols, ISSN 1929-0748, E-ISSN 1929-0748, Vol. 6, no 2, article id e19Article in journal (Refereed) Published
Abstract [en]

Background: Participatory research approaches have been introduced to meet end-users’ needs in the development of health promotion interventions among children. However, whereas children are increasingly involved as passive informants in particular parts of research, they are rarely involved as partners, equal to adult researchers, throughout the research process. This is especially prominent in the context of child health where the child is commonly considered to be vulnerable or when the research concerns sensitive situations. In these cases, researchers and gatekeepers to children’s involvement base their resistance to active involvement of children on potential adverse effects on the accuracy or quality of the research or on ethical or moral principles that participation might harm the child. Thus most research aimed at developing health promotion interventions for children in health care is primarily based on the involvement of parents, caregivers, and other stakeholders.

Objective: The objective of this paper is to discuss reasons for involving children in health promotive research and to explore models for children’s participation in research as a basis for describing how researchers can use design methodology and participatory approaches to support the participation and contribution of children in a vulnerable context.

Methods: We developed and applied a model for children's participation in research to the development of a digital peer support service for children cancer survivors. This guided the selection of appropriate research and design methodologies (such as interviews, focus groups, design sessions, and usability evaluation) for involving the children cancer survivors (8-12 years) in the design of a digital peer support service.

Results: We present a model for what children’s participation in research means and describe how we practically implemented this model in a research project on children with cancer. This paper can inform researchers in their planning of strategies for children’s participation and ensure future development of health promotion interventions for children is based on their perspectives.

Conclusions: Challenges in reaching a suitable degree of participation during a research project involve both creating opportunities for children to have genuine influence on the research process and organizing this involvement so that they feel they understand what they are involved in and why. To achieve this, it is essential to enable children to be involved in research over time to gain confidence in the researchers and to develop children’s abilities to make decisions throughout the research processes.

Place, publisher, year, edition, pages
Toronto, ON: JMIR Publications, Inc., 2017
Keyword
children, participation, involvement, research
National Category
Health Sciences Other Health Sciences
Identifiers
urn:nbn:se:hh:diva-33659 (URN)10.2196/resprot.7094 (DOI)000395837900011 ()28174150 (PubMedID)
Funder
Swedish Research CouncilKnowledge FoundationSwedish Research Council Formas
Note

Funding: Swedish Childhood Cancer Foundation, the Swedish Research Council, the Knowledge Foundation, and the Swedish Research Council Formas.

Available from: 2017-04-03 Created: 2017-04-03 Last updated: 2018-03-23Bibliographically approved
Häggström Westberg, K., Wilhsson, M., Svedberg, P., Nygren, J. M., Morgan, A. & Nyholm, M. (2017). Optimism as a Candidate Health Asset: Exploring Its Links with Adolescent Quality of Life in Sweden. Child Development
Open this publication in new window or tab >>Optimism as a Candidate Health Asset: Exploring Its Links with Adolescent Quality of Life in Sweden
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2017 (English)In: Child Development, ISSN 0009-3920, E-ISSN 1467-8624Article in journal (Refereed) Epub ahead of print
Abstract [en]

This study aims to understand the role that optimism could play in the context of a health asset approach to promote adolescent health-related quality of life (HRQOL). Adolescents (n = 948), between 11 and 16 years old from a medium-sized rural town in Sweden, answered questionnaires measuring optimism, pessimism, and HRQOL. The findings indicate a significant decrease in optimism and a significant increase in pessimism between early and mid adolescence. The study has allowed us to present associational evidence of the links between optimism and HRQOL. This infers the potential of an optimistic orientation about the future to function as a health asset during adolescence and by implication may provide additional intervention tools in the planning of health promotion strategies. © 2017 The Authors

Place, publisher, year, edition, pages
Hoboken: Wiley-Blackwell Publishing Inc., 2017
National Category
Public Health, Global Health, Social Medicine and Epidemiology
Identifiers
urn:nbn:se:hh:diva-35034 (URN)10.1111/cdev.12958 (DOI)28922470 (PubMedID)
Available from: 2017-09-20 Created: 2017-09-20 Last updated: 2017-12-07Bibliographically approved
Sjöberg, C., Svedberg, P., Nygren, J. & Carlsson, I.-M. (2017). Participation in pediatric perioperative care: "what it means for parents". Journal of Clinical Nursing, 26(23-24), 4246-4254
Open this publication in new window or tab >>Participation in pediatric perioperative care: "what it means for parents"
2017 (English)In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 26, no 23-24, p. 4246-4254Article in journal (Refereed) Published
Abstract [en]

Aims and objectives: To explore what it means for parents to participate in their children's paediatric perioperative care.

Background: Allowing parents to participate in paediatric perioperative care can make a major difference for children in terms of their well-being, a decreased need for painkillers, fewer sleeping disorders and a more positive experience for both parties. The nurse anaesthetist should have a holistic view and develop a shared vision for the child, the parents and for themselves to perform successful paediatric perioperative care.

Design: Descriptive qualitative study.

Methods: The study was conducted in 2014. Data were collected in 20 narrative interviews with 15 mothers and five fathers who had experience of participating in their child's paediatric perioperative day surgery. The analysis was carried out with qualitative content analysis to describe the variations, differences and similarities in the experiences.

Results: The analysis revealed a main category that describes that parental participation in the context of paediatric perioperative care in day surgery meant 'having strength to participate despite an increased vulnerability'. Three generic categories with additional subcategories explained what was essential for the parents to be able to preserve this strength and participate in their child's care despite their increased vulnerability. The generic categories were named, 'gaining information about what will happen', 'being seen as a resource' and 'gaining access to the environment'.

Conclusion: Efforts should be made to improve parents' roles and opportunities to participate in paediatric perioperative care.

Relevance to clinical practice: Nurse anaesthetists have a crucial role in enabling parents' participation and need knowledge to develop strategies and nursing interventions that meet parents' needs. © 2017 John Wiley & Sons Ltd.

Place, publisher, year, edition, pages
Chichester: Wiley-Blackwell Publishing Inc., 2017
Keyword
Advanced Nursing, Anxiety, Child, Decision-making, Family-Centred care, Nurse-Patient Relationships, Parent, Preoperative, Qualitative Approaches
National Category
Nursing
Identifiers
urn:nbn:se:hh:diva-33585 (URN)10.1111/jocn.13747 (DOI)28152208 (PubMedID)2-s2.0-85016469835 (Scopus ID)
Projects
Hälsa och hållbar uppväxt
Note

Funding: Partial funding for the study came from Region Halland in Sweden.

Available from: 2017-03-20 Created: 2017-03-20 Last updated: 2017-12-01Bibliographically approved
Organisations
Identifiers
ORCID iD: ORCID iD iconorcid.org/0000-0003-4438-6673

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