Responding to the challenges of parenting a child with cerebral palsy: a focus group

Whittingham, Koa; Wee, Diana; Sanders, Matthew R.; Boyd, Roslyn N.

doi:10.3109/09638288.2010.535090

Cited by 39 publications

(49 citation statements)

References 20 publications

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“…Así mismo las madres y padres de niños con PCI parecen experimentar a lo largo del proceso de parentalidad un mayor número de eventos estresantes 7 , que se asocian con un peor pronóstico de salud para las madres 8 . Diferentes estudios han puesto de manifiesto la existencia de altos niveles de estrés en estos padres, en muchos casos alcanzando un nivel clíni-camente significativo, requiriendo intervención y apoyo especializado 9 .…”

Section: Introductionunclassified

“…También se han asociado a estos padres otros problemas físicos y psicológicos como la aparición de problemas de dolor cervical o de sintomatología ansiosa y depresiva 6 . Por otra parte, los profesionales de la salud que intervienen en estos casos plantean la necesidad de situar la experiencia de duelo que tiene lugar en los padres 7 . Concretamente hablan de un duelo doble: el duelo por el hijo esperado, que no es el que llega, teniendo los padres que procesar la pérdida del hijo que deberían haber tenido; y el duelo por su propio reconocimiento como padres 4,10 .…”

Section: Introductionunclassified

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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: Introductionunclassified

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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“…This study was conducted in conjunction with research into parenting and the parental acceptability of a parenting intervention for parents of children with CP which is reported elsewhere [12]. The analytic methodology used for the focus group data is thematic analysis, a widely used descriptive qualitative methodology that is not theoretically bounded [13].…”

Section: Designmentioning

confidence: 99%

“…Parents were also asked about parenting and the acceptability of a parenting intervention and this is reported elsewhere [12].…”

Section: Participantsmentioning

confidence: 99%

Sorrow, coping and resiliency: parents of children with cerebral palsy share their experiences

Whittingham

Wee

Sanders

et al. 2012

Disability and Rehabilitation

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Purpose: To explore the grieving, coping and resiliency experiences of parents of children with CP and to investigate the suitability of chronic sorrow theory as a framework to understand those experiences.Method: This study combined focus groups with a web-based cross-sectional survey to explore chronic sorrow in parents of children with CP. Eight parents of children with CP participated in focus groups. The discussion was transcribed verbatim and thematic analysis was performed. A further 94 parents participated in the web-based survey study in which they completed the Adapted Burke Questionnaire on chronic sorrow. A content analysis of responses was used to confirm the primary qualitative analysis.Results: The reports of parents in the focus group were consistent with chronic sorrow theory, as were the responses of parents to the web-based survey. Some parents found the diagnosis itself a distressing time whereas others found it a relief. Parents reported that times of medical and allied health intervention were particularly challenging.Conclusion: Chronic sorry theory is a useful way of understanding the experiences of parents of children with CP. It is recommended that health practitioners are mindful that, even years after diagnosis, parents of children with CP may experience intensified chronic sorrow symptoms following a triggering event and that this is normal.

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“…Beyond grandparents, researchers have also explored the needs and preferences of parents of middle income countries (Mejia, Calam, & Sanders, 2013), parents of preterm babies (Ferrari, Whittingham, Boyd, Sanders, & Colditz, 2011), parents of children with cerebral palsy (Whittingham, Wee, Sanders, & Boyd, 2011), parents of children with Autism Spectrum Disorder (Whittingham, Sofronoff, & Sheffield, 2006) and ethnically diverse populations (Morawska, Haslam, Milne, & Sanders, 2011). Interestingly, however, all these studies have in common is a focus on the parent-as-consumer.…”

Section: Consumer Engagement and The Development Of Parenting Intervementioning

confidence: 99%

Innovation, engagement, and the evaluation of a parenting intervention for improving sibling relationships

Pickering¹

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Siblings play an integral role in shaping each other's psychosocial development. Sibling relationships marked by positive, prosocial interactions provide an ideal platform for individuals to acquire essential life skills that will benefit them throughout life. On the other hand, early sibling relationships marked by elevated levels of hostility and conflict can have serious long-term, negative consequences. Of all the factors that influence the sibling relationship, few are as important as parents. Currently, there are no parenting programs that have been co-constructed with parents in the community to help them with improving their children's sibling relationships.This dissertation seeks to make an important contribution to literature by taking on the challenge of developing and evaluating a parenting program for improving sibling relationships.The feature of this body of work is the evaluation of a version of the Triple P-Positive Parenting Program, tailored to the issue of sibling relationships. However, the goal of this dissertation extends beyond an evaluation of program efficacy. This dissertation also examines the process of innovation and engagement throughout the research process. The thesis seeks to demonstrate that innovation and engagement in evidence-based parenting research enhance the capacity to design interventions that fit with community needs and increase the impact of research.Chapter One provides a general introduction to the current body of work. The chapter makes the case for why sibling relationships are worth studying, why parenting programs are a useful tool to improve sibling relationships, and why engaging parents throughout the research process is important. The chapter also articulates an innovation engagement framework that describes the mechanisms associated with linking ideas to impact. Chapter Two provides a model of consumerengaged program development. Using sibling conflict as a case study, the model articulates how evidence-based parenting interventions can be developed in consultation with different members of the community, resulting in benefits to children, families, and the community.Chapter Three presents the outcome data from a national survey of parents on the topic of sibling relationships. The survey bridged an important gap in the literature by incorporating the parent voice as an initial step in designing an intervention for improving sibling relationships. A total of 409 Australian parents completed an online survey relating to their views on sibling behaviours and what, if any, help they desire in dealing with the issue. Parents predominantly required help with conflictual behaviours and attributed the causes of sibling conflict to their child's internal traits, but expressed strong desire for assistance with managing behavioural and verbal problems and reported high levels of acceptability for positive, rather than punitive, parenting strategies. Parents showed a clear preference for parenting interventions delivered in brief, easy to access formats.iii ...

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Responding to the challenges of parenting a child with cerebral palsy: a focus group

Abstract: The parents of children with CP in this study faced a range of parenting challenges that may be effectively targeted by a parenting intervention. In addition, parents and health professionals found SSTP content acceptable and feasible for use with parents of children with CP.

Cited by 39 publications

References 20 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

Sorrow, coping and resiliency: parents of children with cerebral palsy share their experiences

Innovation, engagement, and the evaluation of a parenting intervention for improving sibling relationships

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