Vulnerabilities experienced by family members/caregivers of children with chronic conditions
Child; article; human; palliative therapy; systematic review; interview; caregiver; Only Child; health care personnel; wellbeing; health service; thematic analysis; qualitative research; family; chronic disease; child health; vulnerability; locomotion
The objective was to know the vulnerabilities experienced by family members/caregivers of children with a chronic. Qualitative research supported by the theoretical framework of the French philosopher Rosello Un which 15 family members/caregivers of children with chronic conditions participated in the study. The information was collected in the years 2018 and 2019 and submitted to thematic analysis. The results are presented in three themes: The disease as an expression of the vulnerability of being a child; The child's chronic illness as a condition of vulnerability of the family member/caregiver; The support of support networks: potentialities and vulnerabilities in the daily life of children with chronic conditions and family members/caregivers. Knowing the components of vulnerability experienced by the families of children with chronic conditions is complex, as it requires analyzing and reflecting on the situations these families face, considering their peculiarities, feelings, family organization and the accessibility they have to health services. Therefore, knowledge about the context in which these families are inserted is essential to establish an adequate planning of health actions aimed at promoting their well-being.Copyright © 2023, Institute de Medicina Social da UERJ. All rights reserved.
Milbrath VM; Gabatz RIB; Vaz JC; Hense TD
Physis
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1590/S0103-7331202333034.en" target="_blank" rel="noreferrer noopener">10.1590/S0103-7331202333034.en</a>
Promoting adaptive behaviors by two girls with Rett syndrome through a microswitch-based program
Assistive technology; Indices of happiness; Locomotor behavior; Microswitches; Rett syndrome; adaptive behavior; adolescent; article; case report; child behavior; female; hand washing; happiness; human; locomotion; priority journal; school child; stereotypy; tone and motor problems; Rett syndrome; physical intervention; Wobble microswitch; optic sensors; stereotyped movements
We assessed a microswitch-based program to improve self-determination to access to preferred stimuli and to foster locomotor behavior by two girls with Rett syndrome and multiple disabilities. To enhance the first behavior (access to preferred stimuli) a wobble microswitch (sensitive touch sensor) was used while for the second behavior (step responses) optic sensors were applied. A second aim of the study was to monitor indices of happiness as consequence of the use of assistive technology. Finally, a third objective of the study was the reduction of hand washing and body rocking related stereotypies. The study was carried out according to a multiple probe design across behaviors for both participants, where the two behaviors were first learned independently, then combined together. Results showed an increasing of performance and of indices of happiness and a decreasing of stereotyped behaviors for both participants during intervention phases. Practical, psychological and clinical implications of the findings are discussed. © 2013 Elsevier Ltd. All rights reserved.
Stasolla F; Caffo A O
Research in Autism Spectrum Disorders
2013
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.rasd.2013.07.010" target="_blank" rel="noreferrer noopener">10.1016/j.rasd.2013.07.010</a>