Incorporating Children's and Their Parents' Perspectives into Condition-Specific Quality-of-Life Instruments for Children with Cerebral Palsy: A Qualitative Study

Parkinson, Kathryn; Rice, Helen; Young, Bridget

doi:10.1016/j.jval.2010.12.003

Cited by 10 publications

(7 citation statements)

References 25 publications

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“…Parece que en los primeros momentos la adaptación y el cuidado del niño son el eje central sobre el que giran sus padres, ocupando los aspectos emocionales un lugar más secundario, que se va retomando cuando va pasando el tiempo. Es interesante notar que en adolescentes con parálisis cerebral la relación con sus padres cobra una importancia central con respecto a su percepción de la calidad de vida 26 . En el estudio de Whittingham y col 7 , los padres señalaron que el saber manejar las conductas de los niños era de gran importancia, y que tenían dificultades para interpretar su comportamiento.…”

Section: Discussionunclassified

Experiencias y cambios en los padres de niños con parálisis cerebral infantil: estudio cualitativo

Fernández‐Alcántara

García‐Caro

Berrocal-Castellano³

et al. 2013

Anales Sis San Navarra

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RESUMENFundamento. El diagnóstico de parálisis cerebral infantil (PCI) supone un evento de carácter traumático que puede provocar una multitud de efectos y cambios en el entorno familiar. Se pretende conocer cuáles son las principales dificultades que encuentran los padres en el proceso de parentalidad, especialmente en los primeros momentos tras el diagnóstico.Método. Se realizó un estudio fenomenológico de carácter cualitativo a través de entrevistas semi-estructuradas. Participaron 16 padres y madres cuyos hijos estaban diagnosticados de PCI. El análisis de los datos se llevó a cabo con el software Atlas.ti6.2 a través de una codificación abierta.Resultados. La recepción de la noticia es percibida como un acontecimiento inesperado que obliga a restructurar las expectativas con respecto a su hijo. La forma de relacionarse con el hijo con PCI es diferente a la que se establece con otros niños, centrándose sobre todo en las posibilidades de mejora y en la evolución de su hijo en el futuro. Se observan cambios en diferentes aspectos de la vida de estos padres como el tiempo, la situación económica y laboral, así como las relaciones de pareja. Conclusiones.En la atención a niños con PCI es necesario incorporar y tomar en cuenta la problemática de los padres, especialmente en los primeros momentos del diagnóstico. El proceso de crianza de un hijo con PCI conlleva un gran número de cambios en la dinámica familiar por lo que se necesita abordarlos mediante una perspectiva global. ABSTRACTBackground. The diagnosis of infant cerebral palsy (ICP) is a traumatic event that can provoke multiple effects and changes in the family. The aim of the study is to discover the difficulties that parents face in the process of parenting, especially in the initial period following diagnosis.

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Section: Discussionunclassified

Experiencias y cambios en los padres de niños con parálisis cerebral infantil: estudio cualitativo

Fernández‐Alcántara

García‐Caro

Berrocal-Castellano³

et al. 2013

Anales Sis San Navarra

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“…The qualitative study that informed the development of the CP QOL‐Child used data from 28 families of children across different levels of functioning (Waters et al, ), but the number with ID was unknown. A later qualitative study investigated the applicability of the CP QOL measures for children in the UK, and most of the children had no or mild ID (22/28; Parkinson, Rice, & Young, ). Overall, there are limited data on the important areas of QOL for children with CP and ID.…”

Section: Introductionmentioning

confidence: 99%

Exploring quality of life of children with cerebral palsy and intellectual disability: What are the important domains of life?

Davis

Reddihough

Murphy

et al. 2017

Child

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“…This perspective gap coupled with the possibility for direct child and youth input has been recognized, and over the last 15 years, a number of qualitative studies (Berntsson et al 2007 ; Davis et al 2008 ; Foley et al 2012 ; Hill et al 2014 ; Nicholas et al 2007 ; McEwan et al 2003 ; Panepinto et al 2012 ; Parkinson et al 2011 ; Ronan et al 1999 ; Shikako-Thomas et al 2009 ; Skjerning et al 2014 ; Squitieri et al 2013 ; Vinson et al 2010 ; Young et al 2007 ) have been conducted with children and youth with various chronic conditions to explore the factors that they identify as important to their QOL. The primary themes/domains/factors identified in these studies are listed in Table 1 .…”

Section: Introductionmentioning

confidence: 99%

Quality of Life and Self-Determination: Youth with Chronic Health Conditions Make the Connection

McDougall

Baldwin

Evans

et al. 2015

Applied Research Quality Life

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While optimizing quality of life (QOL) is a key goal of rehabilitation care, no previous study has reported on what ‘QOL’ means to youth with chronic health conditions. In addition, no qualitative studies have explored the relationship between QOL and self-determination (SD). Objectives of this qualitative study were to examine: what the terms ‘quality of life’ and ‘self-determination’ mean to youth with chronic conditions; the factors these youth think are linked with these concepts; the relationship they see between concepts, the types of future goals youth have and how they view the connection between their SD and these goals. A descriptive methodology was used. A purposive sample of 15 youth aged 15 to 20 years was obtained. Youth had cerebral palsy, a central nervous system disorder, or autism spectrum disorder. Semi-structured interviews were conducted first, followed by a focus group. Line-by-line coding of transcripts was completed, codes were collapsed into categories, and themes identified. Participants viewed QOL as an overarching personal evaluation of their life, and used terms such as satisfaction and happiness to describe the concept. Factors related to QOL included: ‘relationships’, ‘supportive environments’, ‘doing things’, ‘personal growth and moving forward’, and ‘understanding of self/acceptance of disability’. Participants described SD in such terms as confidence and motivation. Contributors to SD were: ‘personal strengths’, ‘interdependence’, and ‘functional independence’. SD was considered important to QOL. Youth goals were reflective of the goals of most adolescents. They identified the importance of having key goals that were of personal interest to them. This study adds consumer-based information to the debate over the meaning of QOL. Service providers and decision makers should be aware of the factors that youth feel impact their QOL and SD, the importance of SD to youth QOL, and of SD to future goals, and consider this information when tailoring therapeutic interventions.

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Incorporating Children's and Their Parents' Perspectives into Condition-Specific Quality-of-Life Instruments for Children with Cerebral Palsy: A Qualitative Study

Cited by 10 publications

References 25 publications

Experiencias y cambios en los padres de niños con parálisis cerebral infantil: estudio cualitativo

Experiencias y cambios en los padres de niños con parálisis cerebral infantil: estudio cualitativo

Exploring quality of life of children with cerebral palsy and intellectual disability: What are the important domains of life?

Quality of Life and Self-Determination: Youth with Chronic Health Conditions Make the Connection

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