scholarly journals Parents’ Perceptions of the Value of Children’s Participation in Pediatric Rehabilitation Services: A Phenomenographic Study

2021 ◽  
Vol 18 (20) ◽  
pp. 10948
Author(s):  
Lisa Kronsell ◽  
Petra Svedberg ◽  
Jens Nygren ◽  
Ingrid Larsson
Keyword(s):  
Children With Disabilities ◽  
Rehabilitation Services ◽  
Self Awareness ◽  
Analysis Method ◽  
Structured Interviews ◽  
Pediatric Rehabilitation ◽  
Hierarchical Relationship ◽  
Children’S Participation ◽  
Phenomenographic Study ◽  
Children's Participation

Ensuring that children have opportunities to be involved in decision-making regarding their own care is associated with quality improvement in pediatric rehabilitation. The aim of the study was to explore parents’ perceptions of the value of children’s participation in pediatric rehabilitation services. Semi-structured interviews were conducted with 17 parents of children with disabilities who visited pediatric rehabilitation services. A phenomenographic analysis method was used. Three categories developed from the analysis describing how participation generated value in terms of empowerment, self-awareness, and independence. The outcome space describes a hierarchical relationship between the categories and their influence on each other. Independence achieved through participation was a core aspect and is at the highest level in the hierarchy since it includes and depends on the outcomes from both empowerment and self-awareness. Parents’ perceptions of the value of children’s participation in pediatric rehabilitation services include the possibility for the child to use their entire capacity through values created in terms of empowerment, self-awareness, and independence, in order to live the best life possible. Children with disabilities are diverse as a group, and further research to identify barriers and facilitators of participation is needed to adjust interventions within pediatric rehabilitation services to ensure that children with disabilities can be increasingly empowered, self-aware, and independent.

scholarly journals FACILITATING CHILDREN’S PARTICIPATION WITHIN MULTIDISCIPLINARY MEETINGS: GUIDING PRINCIPLES FOR CHILD AND YOUTH CARE CENTRES

2021 ◽  
Vol 57 (3) ◽  
Author(s):  
Jessica Johannisen ◽  
Carlien Van Wyk ◽  
Hannelie Yates
Keyword(s):  
Child Protection ◽  
National Level ◽  
Youth Care ◽  
Structured Interviews ◽  
African Child ◽  
Child And Youth Care ◽  
Multidisciplinary Meetings ◽  
Children’S Participation ◽  
Guiding Principles ◽  
Children's Participation

Legislation on both an international and national level advocates that all children have a right to participate in all matters affecting them. This article reflects an interest in children’s participation in the broad field of child protection, and specifically within the context of South African child and youth care centres. Against this contextual background, the article aims to introduce guiding principles that may stimulate ongoing conversation on the facilitation of children’s participation in a specific space of decision-making within child and youth care centres, namely multidisciplinary meetings. Guiding principles were derived from a comprehensive qualitative study in which individual semi-structured interviews and focus group groups were conducted to collect data from residential social workers, child and youth care workers, and children from child and youth care centres in the greater metropolitan area of Cape Town in South Africa

scholarly journals Development of a Digital Decision Support Tool to Aid Participation of Children With Disabilities in Pediatric Rehabilitation Services: Explorative Qualitative Study (Preprint)

2019 ◽  
Author(s):  
Elin Vinblad ◽  
Ingrid Larsson ◽  
Maria Lönn ◽  
Emma Olsson ◽  
Jens M Nygren ◽  
...  
Keyword(s):  
Health Care ◽  
Decision Support ◽  
Young People ◽  
Children With Disabilities ◽  
People With Disabilities ◽  
Decision Support Tool ◽  
Rehabilitation Services ◽  
Pediatric Rehabilitation ◽  
Children And Young People ◽  
Support Tool

BACKGROUND Building a health care system in accordance with the rule of law requires child-centered care, where children and young people, regardless of ability, are allowed to participate in visits with their health care professionals. As part of an overall project focusing on developing and implementing a digital decision support tool to increase the participation of children with disabilities 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 and being able to entrust others with the decision making. With the overall theme <italic>moving toward empowerment of children in pediatric rehabilitation</italic>, 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.

scholarly journals An Ethnographic Study of the Moral Experiences of Children with Cancer in New Delhi, India

2021 ◽  
Vol 8 ◽  
pp. 233339362199581
Author(s):  
Justine M. Behan ◽  
Ramandeep Singh Arora ◽  
Franco A. Carnevale ◽  
Sameer Bakhshi ◽  
Bani Bhattacharjee ◽  
...  
Keyword(s):  
Healthcare Professionals ◽  
Ethnographic Study ◽  
New Delhi ◽  
Not Given ◽  
Structured Interviews ◽  
Moral Dimension ◽  
Children With Cancer ◽  
Policy Makers ◽  
Children’S Participation ◽  
Children's Participation

There is a paucity of research examining children’s experiences with cancer in India. Childhood ethics is an emerging field, focusing on the moral dimension of children’s experiences, to promote children’s participation in their health care. A focused ethnography, using a moral experience framework, was conducted to better understand children’s participation in decisions, discussions, and actions in three oncology settings in New Delhi, India. We interviewed key informants, retrieved key documents, and conducted semi-structured interviews and participant observations with children. All 22 children demonstrated interest in varying aspects of their cancer care. Certain factors facilitated or impeded their participation. Some children became distressed when they lacked information about their treatment or were not given opportunities to enhance their understanding. The results advance our understanding of the moral experiences of children with cancer in India for healthcare professionals, policy makers, families, and interested others.

scholarly journals Perceptions of disability among parents of children with disabilities in Nicaragua: Implications for future opportunities and health care access

2014 ◽  
Vol 34 (4) ◽  
Author(s):  
Susan B Matt
Keyword(s):  
Health Care ◽  
Health Care Access ◽  
Children With Disabilities ◽  
Rehabilitation Services ◽  
Structured Interviews ◽  
Face To Face ◽  
Care Access ◽  
Perceptions Of Disability ◽  
Medical Volunteer ◽  
Access To Medical Care

<p><span>The purposes of this study were to explore caregiver perceptions of the origin of their children's disabilities, aspirations for their children's future, and the frequency with which they sought health care and rehabilitation services for their children with disabilities. A qualitative descriptive design using face-to-face semi-structured interviews of 13 caregivers of children with disabilities was employed. Caregivers cited biomedical explanations, as well as beliefs in superstitious, traditional, and religious-based causes of disability. Respondents reported limited access to medical care and rehabilitation services. Nevertheless, caregivers have hope for their children's futures. Increased global medical volunteer involvement has the potential to improve access to care and rehabilitation services.</span></p>

scholarly journals Development of a Digital Decision Support Tool to Aid Participation of Children With Disabilities in Pediatric Rehabilitation Services: Explorative Qualitative Study

10.2196/14493 ◽  
2019 ◽  
Vol 3 (4) ◽  
pp. e14493
Author(s):  
Elin Vinblad ◽  
Ingrid Larsson ◽  
Maria Lönn ◽  
Emma Olsson ◽  
Jens M Nygren ◽  
...  
Keyword(s):  
Health Care ◽  
Decision Support ◽  
Young People ◽  
Children With Disabilities ◽  
People With Disabilities ◽  
Decision Support Tool ◽  
Rehabilitation Services ◽  
Pediatric Rehabilitation ◽  
Children And Young People ◽  
Support Tool

Background Building a health care system in accordance with the rule of law requires child-centered care, where children and young people, regardless of ability, are allowed to participate in visits with their health care professionals. As part of an overall project focusing on developing and implementing a digital decision support tool to increase the participation of children with disabilities 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 and being 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.

scholarly journals Disabled and immigrant, a double minority challenge. A qualitative study about the experiences of immigrant parents of children with disabilities navigating the Norwegian healthcare system in general and the pediatric rehabilitation services in particular.

2020 ◽  
Author(s):  
Shahrzad Arfa ◽  
Per Koren Solvang ◽  
Berit Berg ◽  
Reidun Jahnsen
Keyword(s):  
Healthcare System ◽  
Communication Skills ◽  
Children With Disabilities ◽  
Healthcare Providers ◽  
Immigrant Families ◽  
Healthcare Services ◽  
Rehabilitation Services ◽  
Immigrant Parents ◽  
Pediatric Rehabilitation ◽  
Parents Experiences

Abstract Background: Immigrants and their Norwegian-born children make up approximately 18% of the total population in Norway. While several studies have been conducted on migrants’ utilization of healthcare services, immigrant families are systematically underrepresented in international studies of children with disabilities. This study, by focusing on experiences of immigrant parents of children with disabilities who are navigating the Norwegian healthcare system in general and the pediatric rehabilitation services in particular, will generate knowledge of how accessible and tailored the services are from their point of view. Methods: This study took a qualitative approach, using semi-structured interviews to explore the experiences of immigrant parents of children with disabilities from non-Western countries. The interviews were transcribed, coded, and analyzed via an inductive thematic analytic approach. Results: The findings show how the “immigrant experience” influenced the way the parents looked at, experienced, and even praised the services. The parents appreciated the follow-up services provided by the pediatric rehabilitation centers, which they experienced as predictable and well-organized. While navigating the services, they experienced several challenges, including the need for information, support, and timely help. They felt exhausted because of the years of struggle in the healthcare system to gain access to the help and services they needed. They expressed how this struggle had affected their own health. The feeling of being treated differently from the majority was another challenge they experienced while navigating the services. The findings also show how the parents’ experiences of communication with healthcare providers were influenced not only by their own language and communication skills but also by the healthcare providers’ intercultural communication skills and dominant organizational culture. Conclusions: The parents’ experiences show that there is still a gap between the public ideal of equal healthcare services and the reality of the everyday lives of immigrant families of children with disabilities. By exploring immigrant parents’ experiences, this study highlights the importance of mobilization at both the individual and system levels to fill the current gap and provide tailored and accessible services to the entire population. Keywords: Immigrant parents, Children with disabilities, Healthcare system.

scholarly journals Lifting the School Mat: An Investigation of Pedagogy and Children's Social Worlds at Mat Time

2021 ◽  
Author(s):  
◽  
Anita Mortlock
Keyword(s):  
Peer Relations ◽  
Teaching Practice ◽  
Peer Group ◽  
Data Gathering ◽  
Academic Learning ◽  
Social Worlds ◽  
Structured Interviews ◽  
Children’S Participation ◽  
Whole Class ◽  
Children's Participation

<p>Primary school teachers’ use of whole-class activity is a well-documented phenomenon. Typically, it is assumed that children’s active participation in group tasks is important for their academic learning and for developing self-concept. However, previous studies have found that children’s participation varies widely. The present research set out to investigate why individual children’s participation differs within the peer group during whole-class activity. Teachers’ pedagogy and children’s social worlds intersect during classroom interactions; it is in this intersecting space that this research is situated.  One specific whole-class activity was chosen as a focus, namely mat time. This is a practice whereby the teacher calls the entire class to the mat typically for the purposes of instruction, discussion, or other similar activity. To understand mat time from the perspectives of the people who experience it, two studies were undertaken using a mixed strategy approach for data gathering. The first study investigated teachers’ perspectives (N=296) using a questionnaire. Participants were asked about a variety of themes relating to mat time including pedagogical uses, strategies, and outcomes. Principal components analyses confirmed the approximate uni-dimensionality of the data relating to each theme, which were then calibrated to a measurement variable using Samejima’s (1969, as cited in DeMars, 2010) graded response model. Various correlations and comparisons were conducted pertaining to the pedagogical factors influencing children’s participation, behaviour, and enjoyment. The second study used qualitative semi-structured interviews with children (n=49) from three year two classrooms situated in different schools. The data were analysed and discussed in relation to peer culture and peer-relations theories, which posit that children’s social groups consist of norms and interests that differ to those of adults’, and that such groups consist of internal social hierarchies.   Taken together, the findings from the two studies indicated that teachers and children differ in their perception of the social climate at mat time. For instance, whereas teachers tended to report that mat time achieved prosocial objectives, children were more likely to describe socially divisive aspects. Such aspects included certain children’s desire to affiliate with specific peers while excluding others, or promoting their own participation over that of classmates. Seating position and opportunities to take active roles were sources of competition. Children’s differing participation was influenced by their individual strategic understandings of how to secure active roles, social support, and academic confidence. Furthermore, teachers generally reported that children were inattentive during mat time, suggesting that it may be an ineffective context for learning. Nevertheless, when teachers were cognisant of children’s interests, they tended to report better participation across the class. The implications for teaching practice include an onus for teachers to actively protect vulnerable children during mat time, socially and academically, and to ensure that opportunities to take part in activities are equitably distributed.</p>

scholarly journals Lifting the School Mat: An Investigation of Pedagogy and Children's Social Worlds at Mat Time

2021 ◽  
Author(s):  
◽  
Anita Mortlock
Keyword(s):  
Peer Relations ◽  
Teaching Practice ◽  
Peer Group ◽  
Data Gathering ◽  
Academic Learning ◽  
Social Worlds ◽  
Structured Interviews ◽  
Children’S Participation ◽  
Whole Class ◽  
Children's Participation

<p>Primary school teachers’ use of whole-class activity is a well-documented phenomenon. Typically, it is assumed that children’s active participation in group tasks is important for their academic learning and for developing self-concept. However, previous studies have found that children’s participation varies widely. The present research set out to investigate why individual children’s participation differs within the peer group during whole-class activity. Teachers’ pedagogy and children’s social worlds intersect during classroom interactions; it is in this intersecting space that this research is situated.  One specific whole-class activity was chosen as a focus, namely mat time. This is a practice whereby the teacher calls the entire class to the mat typically for the purposes of instruction, discussion, or other similar activity. To understand mat time from the perspectives of the people who experience it, two studies were undertaken using a mixed strategy approach for data gathering. The first study investigated teachers’ perspectives (N=296) using a questionnaire. Participants were asked about a variety of themes relating to mat time including pedagogical uses, strategies, and outcomes. Principal components analyses confirmed the approximate uni-dimensionality of the data relating to each theme, which were then calibrated to a measurement variable using Samejima’s (1969, as cited in DeMars, 2010) graded response model. Various correlations and comparisons were conducted pertaining to the pedagogical factors influencing children’s participation, behaviour, and enjoyment. The second study used qualitative semi-structured interviews with children (n=49) from three year two classrooms situated in different schools. The data were analysed and discussed in relation to peer culture and peer-relations theories, which posit that children’s social groups consist of norms and interests that differ to those of adults’, and that such groups consist of internal social hierarchies.   Taken together, the findings from the two studies indicated that teachers and children differ in their perception of the social climate at mat time. For instance, whereas teachers tended to report that mat time achieved prosocial objectives, children were more likely to describe socially divisive aspects. Such aspects included certain children’s desire to affiliate with specific peers while excluding others, or promoting their own participation over that of classmates. Seating position and opportunities to take active roles were sources of competition. Children’s differing participation was influenced by their individual strategic understandings of how to secure active roles, social support, and academic confidence. Furthermore, teachers generally reported that children were inattentive during mat time, suggesting that it may be an ineffective context for learning. Nevertheless, when teachers were cognisant of children’s interests, they tended to report better participation across the class. The implications for teaching practice include an onus for teachers to actively protect vulnerable children during mat time, socially and academically, and to ensure that opportunities to take part in activities are equitably distributed.</p>

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