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Barns delaktighet i pediatrisk vård – perspektiv, erfarenheter och möjligheter till förändring utifrån barn med långvarig sjukdom
Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI).ORCID iD: 0000-0003-0711-3457
2020 (Swedish)Doctoral thesis, comprehensive summary (Other academic)
Abstract [sv]

Bakgrund: Det senaste decenniet har patientens delaktighet fått en allt större uppmärksamhet i forskning, riktlinjer, lagar och klinisk vård. Men många barn känner sig inte delaktiga i sin vård. Vårdpersonal och föräldrar talar ofta över huvudet på barn och ofta förstår barnen inte vad de vuxna pratar om. Barn har också svårt att själva uttrycka sig verbalt i vårdsituationer. Det saknas studier som undersöker långvarigt sjuka barns perspektiv på främjande faktorer för barns delaktighet i vården. Det saknas också användarvänliga svenska validerade verktyg och frågeformulär där barn självständigt kan uttrycka sig och interagera med vårdpersonal, för att mäta barns delaktighet och för att tillämpa delaktighet praktiskt i vården. Både patientlagen och lagen om Förenta nationernas barnkonvention deklarerar att alla barn har rätt att vara delaktiga i sin vård. Denna rättighet behöver överföras till praktisk handling och både vårdpersonal och hälso- och sjukvården som organisation behöver utvecklas.

Syfte: Det övergripande syftet med avhandlingen var att utforska barns perspektiv på delaktighet i sin vård, hos barn med långvarig sjukdom och att utveckla och validera verktyg och instrument för att stödja pediatriska verksamheter i tillämpning av barns delaktighet.

Metod: I delstudie I användes en konstruktivistisk grundad teori för att utforska barns perspektiv, erfarenheter och önskemål om delaktighet samt främjande faktorer för att öka barns delaktighet. Datainsamlingen skedde genom intervjuer och fokusgrupper med barn med reumatisk sjukdom. I delstudie II användes en konvergent parallell mixad metod för att undersöka om det digitala kommunikationsverktyg Sisom påverkade delaktigheten hos barn med cancer under läkarbesök. I delstudie III användes en participatorisk design där det digitala kommunikationsverktyg Sisom vidareutvecklades och validerades i en svensk kontext. Metoden som användes var iterativ utvärdering genom low- and high-fidelity med friska barn och barn med cancer som deltagare. I delstudie IV användes en instrumentutvecklings design för att utveckla, validera och psykometriskt testa ett frågeformulär om barns delaktighet i vården. I studien deltog friska barn och barn med olika långvariga sjukdomar i utvecklingsarbetet.

Resultat: I delstudie I framkom kärnkategorin Att släppa rädsla och osäkerhet öppnar för tillit och delaktighet med Att omges av trygga relationer och miljöer och Att bli stärkt och att få stöd för att kunna vara delaktig som tillhörande koder från den fokuserade kodningen. Dessa koder framkom från med barn med långvarig sjukdom som främjande faktorer för barns delaktighet i vården. Det kvalitativa resultatet i delstudie II visade att barns delaktighet ökade vid användning av det digitala kommunikationsverktyget Sisom. Det kvantitativa resultatet visade att läkarna tilltalade barnen oftare och att barnen talade något mer. I delstudie III utvecklades Sisom, tillsammans med barn, till ett användarvänligt digitalt verktyg på svenska. Verktyget utvecklades från problem fokuserat till salutogenetiskt och påståenden ändrades till frågor. Frågeformuläret (ChiPaC) som utvecklades i delstudie IV resulterade i ett frågeformulär där barn själva kan uttrycka sin uppfattning av delaktighet. Statistiska beräkningar resulterade i en faktoranalys med en fyra-faktorlösning, där 12 frågor inkluderades som förklarade 59,47 % av variansen. De fyra faktorerna benämndes: Att få vara med, Att lita på personalen, Att ta kontroll och Att förstå information. Intra Class Correlation visade stark och måttlig samstämmighet mellan sex av frågorna, svag samstämmighet mellan fem frågor och otillräcklig på en. Chronbach´s alpha beräknades till 0,76. 

Konklusion:  Främjande faktorer för barns delaktighet i sin egen vård vid långvarig sjukdom är trygga relationer och miljöer samt att få stöd i att kunna vara delaktiga. Det digitala kommunikationsverktyget Sisom möjliggör för barn 6–12 år med långvarig sjukdom att självständigt uttrycka sina uppfattningar om hur de mår och sina upplevelser kring sin situation. Sisom främjar också barns delaktighet i form av att de blir lyssnade till, får uttrycka sina åsikter och synpunkter samt får dessa beaktade i samtal med vårdpersonal. Frågeformuläret ChiPaC visade tillfredställande psykometriska egenskaper för att kunna användas vid utvärdering av barns delaktighet i vården. Sisom och ChiPaC utvecklades från barns perspektiv med barn med långvarig sjukdom och friska barn som medaktörer.  Denna avhandling bidrar även till kunskap om hur barn med långvarig sjukdom kan engageras som medaktörer i forskning.

Abstract [en]

Background: In the past decade, patient participation has received increasing attention in research, care guidelines, laws and clinical care. Promotion of children´s rights to participate in things that involve them can be expected to intensify as the Children's Convention becomes law in Sweden. Despite this, many children do not feel involved. Often healthcare professionals and parents communicate above the heads of the children who therefore do not understand what the adults are talking about. Children may also find it difficult to express themselves verbally in such care situations. There is a lack of studies examining factors that promote children's participation in care from the perspectives of children with long-term diseases. There is also a lack of user-friendly validated tools and instruments in Swedish that enable children to express themselves and interact with healthcare professionals independently. Such tools and instruments are needed to translate practical involvement in the care situation and to enable the follow-up of children's experience of their participation in care. 

Aim: The overall aim of this dissertation was to explore the perspectives of children with long-term diseases regarding the participation in their own care, and to develop tools and instruments that support pediatric activities in the implementation of children's participation.

Methods: In study I, a constructivist grounded theory was used to explore children's perspectives, experiences and preferences for participation in healthcare situations among children with rheumatic diseases to promote their participation in pediatric healthcare. The data collection was conducted through interviews and focus groups with children diagnosed with rheumatic diseases. In study II, a convergent parallel mixed method was used to investigate whether the digital communication tool Sisom affected the participation of children diagnosed with cancer during appointments with pediatricians. In study III, a participatory design was used to develop and evaluate the digital communication tool Sisom in a Swedish context. The method used was iterative evaluation by low- and high-fidelity with healthy children and children with cancer. In study IV, an instrument development design was used to develop, validate and psychometrically test a questionnaire on children's participation in care. In the study, healthy children and children with various long-term diseases participated in the development work.

Results: In study I promoting factors for children's participation emerged through the core category Releasing fear and uncertainty opens up for confidence and participation with Surrounded by a sense of security and comfort and Be strengthened and supported to be involved as codes. The qualitative result in study II showed that children's participation increased with the use of the digital communication tool Sisom. The quantitative results showed that the physicians spoke directly to the children more often and the amount time the children spoke increased slightly. In study III, Sisom was developed together with children into a user-friendly digital tool for Swedish conditions. The tool was developed from mainly problem-focused questions into preferentially salutogenic asked questions. The questionnaire (ChiPaC) in study was developed into a new questionnaire where children can express their own perception of participation. Statistical calculations resulted in a factor analysis with a four-factor solution, which included 12 questions that explained 59.47% of the variance. The four factors were named: To be included, To trust professionals, To take control and To understand information. Intra Class Correlation showed strong and moderate agreement between six of the questions, weak agreement between five questions and insufficient agreement in one question. Chronbach's alpha was calculated to be 0.76 for the entire instrument.

Conclusion: Factors that promote the participation of children with long-term diseases in their own care are secure and trustful relationships and environments, as well as receiving support to be able to participate. The digital communication tool Sisom enables children 6-12 years of age with long-term diseases to independently express their views on how they feel and their experiences about their situation. Sisom also promotes children's participation because they are being listened to, permitted to express their views and opinions, and their views are taken into account in discussions with health care professionals. The ChiPaC questionnaire showed satisfactory psychometric properties to be used in evaluating children's participation in care. Sisom and ChiPaC were developed from a child´s perspective with children with long-term diseases and healthy children as co-actors. Thereby this dissertation also contributes knowledge about how children with long-term diseases can be involved as co-actors in research.

Place, publisher, year, edition, pages
Halmstad: Halmstad University Press, 2020. , p. 131
Series
Halmstad University Dissertations ; 64
Keywords [en]
Child, e-health services, long-term diseases, patient participation, pediatric care
Keywords [sv]
Barn, patientdelaktighet, långvarig sjukdom, e-hälsotjänster, pediatrisk vård
National Category
Nursing
Identifiers
URN: urn:nbn:se:hh:diva-41606ISBN: 978-91-88749-36-9 (print)ISBN: 978-91-88749-37-6 (electronic)OAI: oai:DiVA.org:hh-41606DiVA, id: diva2:1391579
Public defence
2020-03-06, Baertling, Hus J, Kristian IV:s väg 3, Halmstad, 10:00 (Swedish)
Opponent
Supervisors
Available from: 2020-02-13 Created: 2020-02-05 Last updated: 2020-02-13Bibliographically approved
List of papers
1. Promoting participation in healthcare situations for children with JIA: a grounded theory study
Open this publication in new window or tab >>Promoting participation in healthcare situations for children with JIA: a grounded theory study
2016 (English)In: International Journal of Qualitative Studies on Health and Well-being, ISSN 1748-2623, E-ISSN 1748-2631, Vol. 11, article id 30518Article in journal (Refereed) Published
Abstract [en]

Children’s right to participate in their own healthcare has increasingly become highlighted in national and international research as well as in government regulations. Nevertheless, children’s participation in healthcare is unsatisfactorily applied in praxis. There is a growing body of research regarding children’s participation, but research from the children’s own perspective is scarce. The aim of this study was thus to explore the experiences and preferences for participation in healthcare situations among children with juvenile idiopathic arthritis (JIA) as a foundation for creating strategies to promote their participation in pediatric healthcare. Twenty children, aged 8 to 17 years, with JIA were interviewed individually and in focus groups. In order to increase the children’s opportunities to express their own experiences, different interview techniques were used, such as draw-and-tell and role play with dolls. The analysis was conducted with a constructivist grounded theory. The result explores children’s perspective of influencing processes promoting their participation in healthcare situations. The core category that emerged was, “Releasing fear and uncertainty opens up for confidence and participation,” and the categories related to the core category are, “surrounded by a sense of security and comfort,” and “strengthened and supported to become involved.” In conclusion, the knowledge gained in this study offers new insights from the perspective of children themselves, and can constitute a valuable contribution to the understanding of necessary conditions for the development of specific interventions that promote participation among children in healthcare situations.

Place, publisher, year, edition, pages
Järfälla: Co-Action Publishing, 2016
Keywords
Children, healthcare, participation, constructivist grounded theory, Juvenile Idiopathic Arthritis
National Category
Nursing Rheumatology and Autoimmunity
Identifiers
urn:nbn:se:hh:diva-30525 (URN)10.3402/qhw.v11.30518 (DOI)000396163300001 ()2-s2.0-84982705815 (Scopus ID)
Note

This study was supported by grants from Region Halland, Norrbacka-Eugenia foundation, The Swedish Rheumatism Association, and the Stig-Thunes foundation.

Available from: 2016-03-15 Created: 2016-03-15 Last updated: 2020-02-05Bibliographically approved
2. Impact of an eHealth service on child participation in pediatric oncology care – a quasi-experimental study
Open this publication in new window or tab >>Impact of an eHealth service on child participation in pediatric oncology care – a quasi-experimental study
2020 (English)In: Journal of Medical Internet Research, ISSN 1438-8871, E-ISSN 1438-8871Article in journal (Other academic) Submitted
Abstract [en]

Background: There is a shortage of electronic Health (eHealth) services for children 6-12 years old, which promotes their participation in healthcare. Children with long-term diseases want to be more involved in their healthcare, and have the right to receive information, to be listened to, to express their opinions and to participate in decision-making in healthcare.

Objective: The aim of this study was to investigate children’s participation during appointments with pediatricians at pediatric oncology clinics, with or without the use of the eHealth service Sisom.

Method: A quasi-experimental design with mixed methods was used. Twenty-seven appointments with pediatricians for 14 children aged 6-12 years (mean 8.3) with a cancer diagnosis were filmed and analyzed. The intervention group consisted of children who used an eHealth service prior their appointments with pediatricians at a pediatric oncology clinic and the control group consisted of children during their appointments with pediatricians at four other pediatric oncology clinics. The data from the observations from the films were analyzed with quantitative and qualitative analysis. The quantitative analysis included manual calculations of how many times the pediatricians spoke directly to the children, of the proportion of the appointment time that the children were talking and their levels of participation. The qualitative analysis included directed content analysis included observations of the video films to assess the children´s levels of participation manifested themselves.

Results:  A greater proportion of what the pediatrician said in the intervention group was addressed to the child than occurred in the control group, but the proportion of the appointment time the children talked was almost the same for both the intervention and the control groups. The levels of participation corresponded to the first three levels of Shier´s participation model: Children were listened to, Children were supported to express their views and Children´s views were taken into account. The results showed an increased level of the children´s participation in the intervention group. Several codes were found about information, which did not fit into any of the existing categories, and a new category was thus formed: Children received information. Situations were also identified where children were actively excluded from participation; these were presented as negative codes.

Conclusions: This study shows that the eHealth service Sisom can increase children´s participation during appointments with healthcare professionals. Future research should focus on evaluating outcomes on individual and organizational levels and in different healthcare contexts. © The authors. All rights reserved

Place, publisher, year, edition, pages
Toronto: J M I R Publications, 2020
Keywords
Cancer, child care, communication, eHealth, patient participation
National Category
Pediatrics
Identifiers
urn:nbn:se:hh:diva-41605 (URN)10.2196/preprints.17673 (DOI)
Note

Funder: Region Halland and the Center for Research on Welfare, Health, and Sport at Halmstad University.

Available from: 2020-02-05 Created: 2020-02-05 Last updated: 2020-02-28
3. Redesign and Validation of Sisom, an Interactive Assessment and Communication Tool for Children With Cancer
Open this publication in new window or tab >>Redesign and Validation of Sisom, an Interactive Assessment and Communication Tool for Children With Cancer
Show others...
2016 (English)In: JMIR mhealth and uhealth, E-ISSN 2291-5222, Vol. 4, no 2, article id e76Article in journal (Refereed) Published
Abstract [en]

BACKGROUND: Children with cancer undergo intensive and long treatment periods that expose them and their families to a number of difficult physical, mental, and social challenges. Empowering children by actively involving them in their care can help them to cope with these challenges. It can, however, be difficult for children to be involved and talk about their illness experiences in a "traditional" conversation with health care professionals, especially for younger children. Sisom (Norwegian acronym "Si det som det er" or "Tell it how it is") is an interactive computer-based assessment and communication tool to give children (aged 6-12 years) with cancer a "voice" in their care. Because of technological advances and widespread use of mobile devices Sisom had to be redesigned to better meet the needs of children of today.

OBJECTIVE: To redesign Sisom for use on mobile devices and to validate and adapt it for use in a Swedish population of children with cancer.

METHODS: A user-experience design was used. Content adaptation included forward-backward translation by Swedish and Norwegian translators. Healthy children (n=5), children with experiences of cancer treatment (n=5) and their parents (n=5), and pediatric nurses (n=2) were then involved in culturally adapting Sisom to the Swedish context. The iterative low- and high-fidelity evaluation was supported by a think aloud method, semistructured interviews, and drawings to capture children's views of Sisom. The redesign and evaluation continued until no further changes or improvements were identified by the participants or the researchers.

RESULTS: Children, parents, and pediatric nurses offered many suggestions for improvements to the original version in terms of content, aesthetics, and usability of Sisom. The most significant change that emerged through user input was a modification that entailed not using problem-focused statements in the assessment items. The parents and pediatric nurses considered the revised assessment items to be general and less diagnosis specific. The evaluation of aesthetics resulted in brighter colors and more positive and exciting details in the animations. The evaluation of usability included improvements of the verbal instructions on how to navigate in Sisom 2, and also that the answers to assessmentitems in Sisom 2 should be saved to provide the children with the option to pause and to continue answering the remaining assessment items at a later stage.

CONCLUSIONS: Overall, this paper describes the process of using user-experience design with children in order to redesign and validate an interactive assessment and communication tool and how the outcomes of this process resulted in a new version, Sisom 2. All participants confirmed the usability and qualities of using the final version. Future research should be directed toward the implementation of Sisom 2 in clinical practice and to evaluate outcomes from individual and organizational levels.

Place, publisher, year, edition, pages
Toronto: JMIR Publications Inc., 2016
Keywords
cancer, children, communication, mobile app, participation, validation
National Category
Other Health Sciences Nursing Human Computer Interaction
Identifiers
urn:nbn:se:hh:diva-31387 (URN)10.2196/mhealth.5715 (DOI)000381182400044 ()27343004 (PubMedID)
Funder
Swedish Childhood Cancer FoundationKnowledge Foundation
Note

The research was financially supported by the Swedish Childhood Cancer Foundation, the Knowledge Foundation, Region Halland, and the Center of Research on Welfare, Health and Sport at Halmstad University.

Available from: 2016-06-26 Created: 2016-06-26 Last updated: 2020-02-05Bibliographically approved
4. Child participation in health care (ChiPaC)—Development and psychometric evaluation of a self‐report instrument for children's participation in health care
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: 2020-02-05Bibliographically approved

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