Decision‐Making in Paediatric Rehabilitation: Exploring Professionals' and Children's Views on Decision‐Making Involvement

Bekken, Wenche

doi:10.1111/chso.12218

Cited by 9 publications

(4 citation statements)

References 26 publications

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“…They were nevertheless left out in certain contexts, such as in the schoolyard. Similar to other studies' findings (Andersen and Dolva 2014;Bekken 2017), initially, the younger participants were not very critical of their limited possibilities for participation and appeared to take the status quo for granted. However, when faced with new options, such as PA, they emphasised the positive impacts of these supports on helping them lead better lives and participate along with others.…”

Section: Discussionsupporting

confidence: 84%

“I Just Want to Live My Life”: Young Disabled People’s Possibilities for Achieving Participation and Wellness

Ingimarsdóttir,

Egilson

2024

Social Sciences

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This study aimed to (a) explore disabled children’s and adolescents’ possibilities for participation and (b) identify the practices and policies that affect their participation and how these are enacted. Case studies were conducted with seven children and adolescents with various impairments. Each case included interviews with the young person, their parents and teachers, as well as observations in their usual environments. The interview topics covered the young people’s participation, their sense of belonging and aspects that were pivotal to their engagement and wellness. The observations focused on their possibilities for participation and interactions with peers and adults. These young disabled people’s possibilities for participation at home, in school and in their neighbourhoods were affected by complex dynamics between personal and environmental factors. Whether and how the young people’s disability-related rights were enacted depended on the socio-cultural–material arrangements and parents’ knowledge of the welfare system. To better understand and act on the complex and marginalised position of young disabled people, more focus should be directed at policies that affect their rights and possibilities for participation and how these are enacted in practice. Knowledge needs to be expanded to scrutinise the disabling hindrances hidden in social and structural spaces and implemented in services.

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Section: Discussionsupporting

confidence: 84%

“I Just Want to Live My Life”: Young Disabled People’s Possibilities for Achieving Participation and Wellness

Ingimarsdóttir,

Egilson

2024

Social Sciences

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“…This is consistent with our critical approach and foregrounds the importance of designing studies around building trust with participants and transparency of goals and strategies through partnerships and dialogues between researchers and disability communities. Our study was inspired by the fact that, although Article 7 in the Convention on the Rights of Persons with Disabilities (United Nations, 2007) states that disabled children’s perspectives are to be given due weight, on an equal basis, with those of other children, there are indications that, they may not be heard or their concerns may not be acted upon in research and practice (Andersen & Dolva, 2014, Bekken, 2017; Einarsdóttir & Egilson, 2016; Wickenden, 2019). In our study, we specifically aimed to include children and young people who are typically excluded from research and to learn from their experiences as a basis for societal change.…”

Section: Theoretical Perspectivementioning

confidence: 99%

Life Quality and Participation of Disabled Children and Young People: Design and Methods of a Transformative Study

Egilson

Ólafsdóttir

Ingimarsdóttir

et al. 2021

International Journal of Qualitative Methods

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The LIFE-DCY research project has two aims. First, to evaluate disabled children’s quality of life (QoL) as reported by themselves and their parents, and second, to locate commonalities, differences, and conflicting issues in the processes that may influence disabled children’s life quality and participation. This paper describes the study design, methodology, and methods along with lessons learned. In addition various methodological and ethical concerns are raised. A sequential mixed-methods design was applied. In Phase one (mapping) we used KIDSCREEN-27 to study how disabled children evaluate their QoL compared with the perspectives of their parents and those of non-disabled children and their parents. Using the Participation and environment measure we also studied parents’ perspectives of their children’s participation in different social contexts. Altogether 209 disabled children and their parents, and 335 children in a control group and their parents (paired reports) participated in phase one. Phase two (unpacking) consisted of 14 case studies with disabled children aged 8–18 years and focus groups with 21 disabled people aged 19–35 years. The initial analysis was inductive and data-oriented. We then used critical and transformative lenses to shed light on how meaning was made of life quality and participation in relation to the context in which study participants found themselves. The LIFE-DCY research promotes an understanding of how important aspects of life quality and participation may intersect within different contexts and at different times. The theoretical understandings from this study may also help unpack various aspects of childhood disability in terms of knowledge and power and enhance understandings of how ideas about normality and childhood disability are constructed.

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“…Exploring clinician’s perspectives of electrical stimulation would help to identify any barriers of use and maximize knowledge translation. Similarly, the child’s perspective on the use of FES for UE rehabilitation would be important to capture as a child’s view on their rehabilitation may not align with that of their parents’ [ 34 ] or their health care team [ 35 ]. Further, consideration of the challenges identified by parents such as cost, availability, and proximity of this therapy will be important to ensure equitable and effective implementation.…”

Section: Discussionmentioning

confidence: 99%

Parents’ perceptions of functional electrical stimulation as an upper limb intervention for young children with hemiparesis: qualitative interviews with mothers

et al. 2022

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Background/objective To explore parents’ perceptions of an upper extremity (UE) intervention using functional electrical stimulation (FES) for young children with hemiparesis. Methods Parents of children aged 3–6 years with a history of perinatal stroke, impaired UE function, and participation in a 12-week FES intervention delivered at a hospital were included in this exploratory qualitative study. Nine mothers participated in a semi-structured interview < 1 week after their child completed the FES intervention (MyndMove®, MyndTec Inc.) targeting the hemiparetic UE. Open-ended questions queried parents’ goals, perceived benefits, and challenges of the FES intervention. Interviews were audio recorded and transcribed verbatim. Qualitative conventional content analysis was used to analyze the transcripts. Results Five themes were identified. 1) Parents’ expectations for the FES intervention. Mothers described setting functional, exploratory, and realistic goals, yet feeling initial apprehension towards FES. 2) Perceived improvement. Physical, functional, and psychological improvements were observed with FES; however, there was still room for improvement. 3) Factors influencing the FES intervention. Program structure, therapist factors, and child factors influenced perceived success. 4) Lack of access to intensive therapy. Mothers noted that FES is not provided in mainstream therapy; however, they wanted access to FES outside of the study. They also highlighted socioeconomic challenges to accessing FES. 5) Strategies to facilitate participation. The mothers provided suggestions for program structure and delivery, and session delivery. Conclusions Mothers perceived the FES intervention to have physical, functional and psychological benefits for their children. Interest in continuing with FES highlights a need to improve access to this therapy for young children.

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Decision‐Making in Paediatric Rehabilitation: Exploring Professionals' and Children's Views on Decision‐Making Involvement

Cited by 9 publications

References 26 publications

“I Just Want to Live My Life”: Young Disabled People’s Possibilities for Achieving Participation and Wellness

“I Just Want to Live My Life”: Young Disabled People’s Possibilities for Achieving Participation and Wellness

Life Quality and Participation of Disabled Children and Young People: Design and Methods of a Transformative Study

Parents’ perceptions of functional electrical stimulation as an upper limb intervention for young children with hemiparesis: qualitative interviews with mothers

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