The Experience of Families With Children With Trisomy 13 and 18 in Social Networks

Janvier, Annie; Farlow, Barbara; Wilfond, Benjamin S.

doi:10.1542/peds.2012-0151

Cited by 199 publications

(203 citation statements)

References 28 publications

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“…4 Many clinicians seem to place a high value on cognitive functioning and independent living, a value that not all parents of children with profound disabilities share. 5 Clinicians' impressions of what life is like with profound disabilities typically are based on experiences limited to providing medical care and, for some, only inpatient care. Parents, in their efforts to present their family's viewpoint and beliefs, often call into question, rightfully, the values and perspectives that clinicians hold that may be influencing the clinical recommendations.…”

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confidence: 99%

Tracheostomies and Assisted Ventilation in Children With Profound Disabilities: Navigating Family and Professional Values

Wilfond

2014

Pediatrics

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Parental requests for gastrostomies, tracheostomies, or assisted ventilation in children with profound disabilities raise ethical concerns about children’s interests, parental decision-making, and health care costs. The underlying concern for many relates to the perceived value of these children. Clinicians should make efforts to appreciate the family’s perspective regarding children with profound disabilities who require respiratory and nutritional medical support. Finding opportunities to learn about the family members’ lives outside of the health care setting may facilitate a deeper understanding of what it means to live with a child who has profound disabilities. In conversations with families, referring to interventions as futile and conditions as lethal will obscure the value-based nature of these decisions. Respiratory and nutritional interventions are not clearly against the interests of most children. Even for children with a limited life span, life-sustaining interventions may be important for the child and family. Health care costs are a serious societal issue; however, the costs associated with profound disabilities are not the most significant contributor. Societal decisions not to provide life-sustaining health care to children with profound disabilities would require a public process. Clinicians may have personal views regarding decisions for their own family or for their vision for society. However, clinicians have professional obligations to families who have different values. It is important to present balanced information and support parental decision-making so parents may decide to forgo or use life-sustaining interventions according to their values and goals.

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confidence: 99%

Tracheostomies and Assisted Ventilation in Children With Profound Disabilities: Navigating Family and Professional Values

Wilfond

2014

Pediatrics

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“…Estos aspectos deben incluirse en las discusiones en las Unidades de Cuidados Intensivos Neonatales, con el acompañamiento del Comité de Bioética o Ética humana de cada institución de salud. 5,6 Finalmente, el origen de la doble trisomía se vincula a una no disyunción; la madre de la paciente tenía 39 años en el momento de la concepción y esa edad materna puede relacionarse con el fenómeno de no disyunción meiótica; 7 aunque no fue posible comprobar el origen paternal de la doble alteración, la edad materna debe tenerse en cuenta en el momento de la asesoría genética. n BIBLIOGRAFÍA…”

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Doble aneuploidía (trisomía X, trisomía 18) en una recién nacida con fenotipo de trisomía 18

Pachajoa¹

2013

Arch Argent Pediat

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Presentación de casos clínicos RESUMENSe presenta el caso de una recién nacida con una doble trisomía, con complemento cromosómico 48,XXX,+18, con fenotipo de síndrome de Edwards (trisomía 18). Las características clínicas fueron restricción del crecimiento intrauterino, facies dismórfica, mano con sobreposición de dedos, comunicación interventricular, estenosis pulmonar y pie equinovaro izquierdo. Se realiza una revisión de la bibliografía y discusión de los casos previamente comunicados. Palabras clave: doble trisomía, síndrome de Edwards, trisomía 18. SUMMARYWe report the case of a newborn girl with a double trisomy, with a chromosome complement 48,XXX,+18, with Edwards syndrome phenotype (trisomy 18). The clinical feature included intrauterine growth retardation, dysmorphic facies, hand with overlapping fingers, ventricular septal defect, pulmonary stenosis and left clubfoot. A review of the literature and discussion of previously reported cases is made.

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“…Many research ethics guidelines promote the idea that an individual who is not involved in the clinical care of the baby, and is not the primary investigator of the study, should be the person approaching the family for informed consent [29]. This is not necessarily what patients want, and probably not what parents want for pediatric research.…”

Section: Historymentioning

confidence: 99%

Integrating Parents in Neonatal and Pediatric Research

et al. 2019

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Background: Parents and their infants are the beneficiaries of neonatal and pediatric research, but in the past they have been excluded from most stages of research projects. As a result, many projects may fail to produce the most worthwhile information for parents and families. Lately, veteran resource parents and patients have been increasingly integrated in research initiatives. Methods: Benchmarking of neonatal and pediatric research initiatives where resource parents and/or ex neonatal patients have helped to optimize pediatric research. We review ways in which resource parents/patients can be involved in research, with examples and practical ideas of how to proceed. Results: Resource parents/patients can be collaborators in research and be integrated in many steps: prioritizing research projects, designing trials, determining the outcomes of interest, ethics review, developing and improving consent procedures, collection and interpretation of data, participation in data safety monitoring committees, publication of results, and presentation to peer groups. Some of the strategies for integration of stakeholders in clinical research are more complex, may involve risk and require more training than others. Conclusion: We suggest that groups wanting to involve parents in their research endeavors start with simpler tasks that entail less risk and develop teams of resource parents who have differing interests and abilities. Quality control of programs is essential, such as frequently giving and obtaining feedback from resource parents/patients and researchers. In the future, integration of resource parents/patients into every step of clinical research will be essential to ensure that parent and family important outcomes are examined.

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The Experience of Families With Children With Trisomy 13 and 18 in Social Networks

Cited by 199 publications

References 28 publications

Tracheostomies and Assisted Ventilation in Children With Profound Disabilities: Navigating Family and Professional Values

Tracheostomies and Assisted Ventilation in Children With Profound Disabilities: Navigating Family and Professional Values

Doble aneuploidía (trisomía X, trisomía 18) en una recién nacida con fenotipo de trisomía 18

Integrating Parents in Neonatal and Pediatric Research

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