Divorce in families of children with Down Syndrome or Rett Syndrome

Lederman, Vivian Renne Gerber; Alves, Bianca dos Santos; Negrão, Juliana Gioia; Schwartzman, José Salomão; D'Antino, Maria Eloisa Famá; Brunoni, Décio

doi:10.1590/1413-81232015205.13932014

Cited by 11 publications

(14 citation statements)

References 13 publications

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“…Caring for a child with RTT therefore requires multiple skills which, at times, may overwhelm the caregivers, along with having to face the associated financial demands, obliging them to maintain their jobs and advance in their careers [13,31]. Despite the fact that previous studies [28,32,33] report how caring and raising girls with RTT can negatively affect the quality of life of caregivers, and decrease satisfaction with their marital relationships [33], in our study this issue was not voiced by participants.…”

Section: Discussionmentioning

confidence: 99%

“…This is in line with previous reports [12,13,29,31,32] which highlight the financial difficulties caregivers have for buying equipment, hiring professionals, as well as the additional financial burden the illness has on families, worsened by one of the caregivers abandoning their work in order to take care of their child. Previous studies [13,31,33] show that it is usually the woman who is forced to leave the workplace, however this option is not for all families, as this would mean a lower income for the family [13].…”

Section: Discussionmentioning

confidence: 99%

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“Living an Obstacle Course”: A Qualitative Study Examining the Experiences of Caregivers of Children with Rett Syndrome

Palacios‐Ceña

Famoso-Pérez

Salom‐Moreno

et al. 2018

IJERPH

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Background: Rett syndrome has considerable effects on the quality of life of affected children, impairing everyday activities and potentially impacting the life of both the caregivers and the family. Our aim was to explore the experiences of a group of caregivers of children with Rett syndrome with regards to living and caring for their children. Methods: We conducted a qualitative case study to examine how 31 caregivers of children with Rett syndrome perceived living with their children. Data were collected through in-depth interviews, focus groups, researchers’ field notes and caregivers’ personal documents. A thematic analysis was performed following the Consolidated Criteria for Reporting Qualitative Research (COREQ) guideline. Results: The experience of being a caregiver of a child with Rett syndrome was expressed as being akin to an “obstacle course”, and was described via three main themes: (a) looking for answers, with two subthemes identified, namely ‘the first symptoms’, and ‘the need for a diagnosis’; (b) managing day to day life, with the subthemes ‘applying treatments’, and ‘learning to care’; and (c) money matters. Conclusions: Rett syndrome has a considerable impact on the lives of the caregivers involved. The health-care process and the management of economic resources are some of the aspects highlighted by caregivers. These findings have important implications for the planning of support services, health systems and health policies.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

“Living an Obstacle Course”: A Qualitative Study Examining the Experiences of Caregivers of Children with Rett Syndrome

Palacios‐Ceña

Famoso-Pérez

Salom‐Moreno

et al. 2018

IJERPH

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“…They have high healthcare needs from a range of providers, putting considerable time and emotional pressure on caregivers ( Moreira et al , 2018 ). Yet the impact of the Zika epidemic on families has received little attention, even though research from a variety of settings, including Brazil, shows that parents of severely disabled children are likely to experience depression, anxiety, stress ( Santos Oliveira et al , 2017 ), spousal separation ( Joesch and Smith, 1997 ; Hartley et al , 2010 ; Lederman et al , 2015 ) and negative economic consequences due to the direct and indirect costs incurred through attending to their child’s caring needs ( Diniz et al , 2017 ).…”

Section: Introductionmentioning

confidence: 99%

Hope and trust in times of Zika: the views of caregivers and healthcare workers at the forefront of the epidemic in Brazil

Simas

Penn‐Kekana

Kuper

et al. 2020

Health Policy and Planning

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This article investigates how hope and trust played out for two groups at the forefront of the Zika epidemic: caregivers of children with congenital Zika syndrome and healthcare workers. We conducted 76 in-depth interviews with members of both groups to examine hope and trust in clinical settings, as well as trust in public institutions, in the health system and in the government of Brazil. During and after the Zika epidemic, hope and trust were important to manage uncertainty and risk, given the lack of scientific evidence about the neurological consequences of Zika virus infection. The capacity of healthcare workers and caregivers to trust and to co-create hope seems to have allowed relationships to develop that cushioned social impacts, reinforced adherence to therapeutics and enabled information flow. Hope facilitated parents to trust healthcare workers and interventions. Hope and trust appeared to be central in the establishment of support networks for caregivers. At the same time, mistrust in the government and state institutions may have allowed rumours and alternative explanations about Zika to spread. It may also have strengthened activism in mother’s associations, which seemed to have both positive and negative implications for healthcare service delivery. The findings also point to distrust in international health actors and global health agenda, which can impact community engagement in future outbreak responses in Brazil and other countries in Latin America.

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“…RTT is associated with severe to profound intellectual disability and a range of other impairments including social and communication limitations [3], developmental regression/loss of skills, motor difficulties, and stereotyped hand movements [2]. Given this array of difficulties, likely leading to challenges for carers, it is not surprising that researchers have shown increased stress and mental health problems in parents (especially mothers) of individuals with RTT compared to normative samples of adults [4,5,6,7,8], and some indication of increased relationship problems compared to parents of children with other disabilities [9].…”

Section: Mothers and Rett Syndromementioning

confidence: 99%

“…Existing research on the correlates of psychological distress or well-being in parents of individuals with RTT has adopted almost exclusively cross-sectional designs [4,5,6,7], and other RTT family research has used retrospective reporting methods [9]. In the only study to include data gathered at more than one time point [8], use of specialised equipment and respite care in 2004 were related to maternal mental and physical health two years later.…”

Section: Mothers and Rett Syndromementioning

confidence: 99%

Change over a 16-month period in the psychological well-being of mothers of girls and women with Rett syndrome

Cianfaglione

Hastings

Felce

et al. 2016

Developmental Neurorehabilitation

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Change over a 16 month period in the psychological well-being of mothers of girls and women with Rett syndrome. Developmental Neurorehabilitation. Permanent WRAP URL: http://wrap.warwick.ac.uk/76994 Copyright and reuse:The Warwick Research Archive Portal (WRAP) makes this work by researchers of the University of Warwick available open access under the following conditions. Copyright © and all moral rights to the version of the paper presented here belong to the individual author(s) and/or other copyright owners. To the extent reasonable and practicable the material made available in WRAP has been checked for eligibility before being made available.Copies of full items can be used for personal research or study, educational, or not-for profit purposes without prior permission or charge. Provided that the authors, title and full bibliographic details are credited, a hyperlink and/or URL is given for the original metadata page and the content is not changed in any way. Mothers and Rett syndrome 2 AbstractPurpose. There is an emerging research literature on the experiences of family members of girls and women with Rett syndrome (RTT), but a lack of longitudinal data.Methods. Fifty mothers whose daughters had RTT were surveyed 16-17 months after an earlier cross-sectional study. Measures completed at both time points focused on maternal positive and negative psychological well-being and their daughters'behavioural and emotional problems and RTT behavioural phenotype severity.

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Divorce in families of children with Down Syndrome or Rett Syndrome

Cited by 11 publications

References 13 publications

“Living an Obstacle Course”: A Qualitative Study Examining the Experiences of Caregivers of Children with Rett Syndrome

“Living an Obstacle Course”: A Qualitative Study Examining the Experiences of Caregivers of Children with Rett Syndrome

Hope and trust in times of Zika: the views of caregivers and healthcare workers at the forefront of the epidemic in Brazil

Change over a 16-month period in the psychological well-being of mothers of girls and women with Rett syndrome

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