Child participation in health care (ChiPaC)—Development and psychometric evaluation of a self‐report instrument for children's participation in health care

2019 ◽  
Vol 29 (1-2) ◽  
pp. 107-118
Author(s):  
Britt‐Mari Gilljam ◽  
Susann Arvidsson ◽  
Jens M. Nygren ◽  
Petra Svedberg
Keyword(s):  
Health Care ◽  
Psychometric Evaluation ◽  
Self Report ◽  
Child Participation ◽  
Children’S Participation ◽  
Children's Participation

Children’s Participation in the Decision-Making Process During Hospitalization: an observational study

2002 ◽  
Vol 9 (6) ◽  
pp. 583-598 ◽  
Author(s):  
Ingrid Runeson ◽  
Inger Hallström ◽  
Gunnel Elander ◽  
Göran Hermerén
Keyword(s):  
Health Care ◽  
Decision Making ◽  
University Hospital ◽  
Care Staff ◽  
Health Care Staff ◽  
Staff Members ◽  
Children’S Participation ◽  
Decision Making Processes ◽  
Children's Participation ◽  
Degree Of Participation

Twenty-four children (aged 5 months to 18 years) who were admitted to a university hospital were observed for a total of 135 hours with the aim of describing their degree of participation in decisions concerning their own care. Grading of their participation was made by using a 5-point scale. An assessment was also made of what was considered as optimal participation in each situation. The results indicate that children are not always allowed to participate in decision making to the extent that is considered optimal. In no case was it judged that a child participated in or was forced to make a decision that was too difficult for the child. The interactions between children, parents and staff were also described in connection with discussions and decision-making processes. This showed that parents do not always support their children in difficult situations and that health care staff often inform children about what is going to happen without presenting alternatives or asking for their views. Staff may, however, find themselves facing an ethical conflict in deciding between supporting a child’s view or following hospital routine. It is of great importance that children are looked upon as potentially autonomous individuals and that staff members realize that one of their core duties is to facilitate children’s participation in decision making concerning their health care.

Children's Participation and International Development: Attending to the Political

2008 ◽  
Vol 16 (3) ◽  
pp. 407-418 ◽  
Author(s):  
Jason Hart
Keyword(s):  
International Development ◽  
Participatory Development ◽  
Political Context ◽  
The Political ◽  
Societal Change ◽  
Political Will ◽  
Child Participation ◽  
International Child ◽  
Children’S Participation ◽  
Children's Participation

AbstractSince the early 1990s participation has grown to become a key notion amongst child-focused international and intergovernmental development organisations. By means of participatory projects such bodies commonly seek to achieve transformation of children's lives. While considerable consideration has been given to the technical, institutional and attitudinal challenges to achievement of this goal, far less attention has been paid to the political context in which such transformation is sought. Drawing upon the emerging critique of (adult) participatory development, this article seeks to illustrate the inherent limitations of child participation resulting from the failure to confront the workings of power associated with capitalist expansion. It argues that societal change leading to the realisation of the rights of impoverished and marginalised children requires greater political will and new forms of alliance amongst international child-focused development organisations.

scholarly journals Measuring Resource Utilization in Patient-Oriented Comparative Effectiveness Research

2011 ◽  
Vol 25 (2) ◽  
pp. 80-106 ◽  
Author(s):  
Arlene Smaldone ◽  
Argerie Tsimicalis ◽  
Patricia W. Stone
Keyword(s):  
Health Care ◽  
Resource Utilization ◽  
Psychometric Evaluation ◽  
The United States ◽  
Care Patient ◽  
Self Report ◽  
Similar Process ◽  
Cost Curve ◽  
Children And Families ◽  
Economic Analyses

In the United States, rising health care costs have led to discussion about bending the cost curve. To understand the true burden of disease and its treatment, costs of care, including those incurred by patients and their families, must be comprehensively assessed using psychometrically sound instruments. The Resource Utilization Questionnaire (RUQ) is a 21-item self-report questionnaire first developed to measure the costs incurred by families of infants who had required intensive care during the newborn period. The purpose of this article is to describe the conceptualization of resource utilization and costs and other methodological issues in conducting economic analyses, the process of adapting the RUQ for use in children and families with Type 1 diabetes mellitus (T1DM), and the psychometric evaluation to establish content and criterion validity of the instrument. The finalized modified RUQ for T1DM (mRUQ-T1DM) contained 25 items reflecting direct (5 items) and nondirect (3 items) health care, patient/family time (8 items), and patient/family productivity (9 items) costs using a 3-month recall. The mRUQ-T1DM validly measures cost incurred by children and families with T1DM and is easily completed by parents. Furthermore, the mRUQ-T1DM may be adapted for use in other populations using a similar process.

scholarly journals Management and Governance Accountability to Children: Participation and Representation in Organisational Decision Making

2021 ◽  
Vol 16 (2-3) ◽  
pp. 197-226
Author(s):  
Claire O'Kane ◽  
Annabel Trapp ◽  
Paul Stephenson ◽  
Julia Smith-Brake
Keyword(s):  
Decision Making ◽  
Young People ◽  
Secondary Data ◽  
Lessons Learned ◽  
Enabling Factors ◽  
Children And Young People ◽  
Child Participation ◽  
Children’S Participation ◽  
Children’S Views ◽  
Children's Participation

Children’s participation and accountability to children are increasingly common aspirations of child-focused organisations; development agencies and research institutions frequently use young people’s advisory councils as one path to participation. A key challenge is to not only find meaningful ways to institutionalise children’s views as part of organisational decision making, but also to identify and address barriers to participation. This article presents the findings of a commissioned landscape assessment to identify good practices and lessons learned from child-focused agencies, in order to inform the operationalisation of children’s requests on programme improvements and accountability to children. The study was exploratory and qualitative. It included primary and secondary data collection, including a desk review, key informant interviews with adults and young people, and focus group discussions with young people. The findings showed common elements of organisational models of child participation and insights from children and young people on the types of decisions they want to influence, reasons why they should be heard, and how-to approaches to support their meaningful participation. Other findings focused on key challenges of children’s participation in governance, including adult mindsets, low capacity, and structural restrictions, and lessons learned on enabling factors, such as organisation-wide buy-in, and space and inclusion for children and young people. Further inquiry could inform the purpose, scope, and appropriateness of child participation in governance structures within child-focused organisations.

scholarly journals Impact of an Electronic Health Service on Child Participation in Pediatric Oncology Care: Quasiexperimental Study

10.2196/17673 ◽  
2020 ◽  
Vol 22 (7) ◽  
pp. e17673
Author(s):  
Britt-Mari Gilljam ◽  
Jens M Nygren ◽  
Petra Svedberg ◽  
Susann Arvidsson
Keyword(s):  
Health Care ◽  
Pediatric Oncology ◽  
Intervention Group ◽  
Control Group ◽  
Appointment Time ◽  
Children’S Participation ◽  
Ehealth Services ◽  
Electronic Health ◽  
Children's Participation ◽  
Ehealth Service

Background For children 6-12 years old, there is a shortage of electronic Health (eHealth) services that promote their participation in health care. Therefore, a digital communication tool, called Sisom, was developed to give children a voice in their health care. Children with long-term diseases want to be more involved in their health care and have the right to receive information, be listened to, express their opinions, and participate in decision making in health care. However, the outcomes of using Sisom in practice at pediatric oncology clinics have not been investigated. 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. Methods A quasiexperimental design with mixed methods was used. We analyzed 27 filmed appointments with pediatricians for 14 children (8 girls and 6 boys) aged 6-12 years (mean 8.3 years) with a cancer diagnosis. The intervention group consisted of children who used Sisom prior to their appointments with pediatricians at a pediatric oncology clinic, and the control group consisted of children who had appointments with pediatricians at 4 pediatric oncology clinics. Data from observations from the videos were quantitatively and qualitatively analyzed. The quantitative analysis included manual calculations of how many times the pediatricians spoke directly to the children, the proportion of the appointment time that the children were talking, and levels of participation by the children. For the qualitative analysis, we used directed content analysis to analyze the children’s levels of participation guided by a framework based on Shier’s model of participation. Results Pediatricians directed a greater proportion of their discussion toward the child in the intervention group (731 occasions) than in the control group (624 occasions), but the proportion of the appointment time the children talked was almost the same for both the intervention and control groups (mean 17.0 minutes vs 17.6 minutes). 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 participation by the children in the intervention group. Several codes that were found did not fit into any of the existing categories, and a new category was thus formed: children received information. Conclusions This study shows that the eHealth service Sisom can increase children’s participation during appointments with health care professionals. Further studies employing a randomized control design focusing on the effects of eHealth services on children’s health outcomes, perceived participation, and cost-effectiveness could make a significant contribution to guiding the implementation of eHealth services in pediatric care.

scholarly journals Children’s participation, local policy and the digital environment: Visions and uses among Spanish municipalities

Comunicar ◽  
2021 ◽  
Vol 29 (69) ◽  
Author(s):  
Ana-María Novella-Cámara ◽  
Clara Romero-Pérez ◽  
Héctor-S. Melero ◽  
Elena Noguera-Pigem
Keyword(s):  
Ad Hoc ◽  
International Association ◽  
Local Level ◽  
Elected Officials ◽  
Digital Environment ◽  
Local Policy ◽  
Child Participation ◽  
Use Of Technology ◽  
Children’S Participation ◽  
Children's Participation

Children's policies at the local level stimulate initiatives in the municipalities to encourage child participation. In this article, we focus on the local political sphere as a space for the promotion of child participation and citizenship through digital mediation. It is in this immediate environment where the rights of children and adolescents are exercised and promoted. The study aims to analyse the contributions perceived by municipal leaders (elected officials and technical figures) of the digital environment and the uses they make of it to promote children’s participation in the municipality. This study is part of a national project that includes as collaborating entities the International Association of Educating Cities (IACE) and Child Friendly Cities (CAI-Unicef). 279 subjects (191 technical figures and 88 elected officials) from 179 Spanish municipalities associated members of IACE and/or CAI. Data were collected in 2020. Two ad hoc designed questionnaires were applied. Two of the most significant results of the study are: (a) the finding of the variable that establishes differences between those technical figures that mediate children’s participation with technological environments and those that do not; (b) the use made of the digital environment as an interactive space for informational purposes. It concludes on the need to rethink the digital environment as a participatory area and increasing the use of technology in support of children’s citizenship. Las políticas de infancia a nivel local dinamizan en los municipios iniciativas para impulsar la participación infantil. En este artículo nos centramos en la política local como espacio promotor de participación y ciudadanía infantil a través de la mediación digital ya que es, en ese entorno inmediato, donde los derechos de la infancia y la adolescencia se ejercitan y se promueven. El estudio persigue analizar qué aportaciones perciben los referentes municipales (cargos electos y figuras técnicas) del entorno digital y qué usos hacen de él para impulsar la participación infantil en el municipio. Este estudio forma parte de un proyecto nacional que cuenta como entidades colaboradoras a la Asociación Internacional de Ciudades Educadoras (AICE) y Ciudades Amigas de la Infancia (CAI-Unicef). Han participado en él 279 sujetos (191 figuras técnicas y 88 cargos electos) procedentes de 179 municipios españoles asociados a AICE y/o CAI. Los datos fueron recabados en 2020. Se aplicaron dos cuestionarios diseñados ad hoc. Dos de los resultados más significativos del estudio son: a) el hallazgo de la variable que establece diferencias entre aquellas figuras técnicas que median la participación infantil con entornos tecnológicos y con las que no lo hacen; b) el uso que se hace del entorno digital como espacio interactivo con fines informativos. Se concluye en la necesidad de repensar el entorno digital como un espacio participativo e incrementar el uso de la tecnología al servicio de la ciudadanía infantil.

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