‘We've been through it all together’: supports for parents with children with rare trisomy conditions

Bruns, Deborah A.; Foerster, Klaus

doi:10.1111/j.1365-2788.2010.01381.x

Cited by 22 publications

(19 citation statements)

References 37 publications

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“…A further complication for parent‐completed surveys is the potential for response bias in that details may be forgotten since the original events occurred. Yet, this author feels that parent‐completed instruments can offer both a broader and more detailed view of this and other low incidence trisomy groups [Bruns, 2008, 2010, 2011; Bruns and Foerster, 2011].…”

Section: Discussionmentioning

confidence: 99%

Birth history, physical characteristics, and medical conditions in long‐term survivors with full trisomy 13

Bruns

2011

American J of Med Genetics Pt A

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The purpose of the study is to provide data about long-term survivors with full trisomy 13 (t13). Mothers of 30 long-term survivors with full t13 completed an online survey. Survey data were downloaded into an SPSS database. Descriptive statistics were used to analyze survey data. Tracking Rare Incidence Syndrome (TRIS) Survey data on survival, birth information including maternal and paternal age at conception, physical characteristics, and medical conditions were compared. Data indicate longer mean survival rates (48.4 months for those living at the time of data collection, 40.8 months for those who died prior) than described in the literature. Means for gestations age, birth weight, and length are 38.11 weeks, 2,789.34 g and 48.45 cm, respectively. Long-term survivors presented with syndrome-related physical characteristics (e.g., low-set ears, cleft lip and palate) and medical conditions (e.g., ventricular septal defect (VSD), feeding difficulties). We conclude that data indicate longer survival and a range in birth information (gestational age, birth weight, and length) along with presence of common presenting physical characteristics and medical conditions of long-term survivors with full t13.

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Section: Discussionmentioning

confidence: 99%

Birth history, physical characteristics, and medical conditions in long‐term survivors with full trisomy 13

Bruns

2011

American J of Med Genetics Pt A

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“…La percepción de las madres referente a cómo es visto el menor por sus vecinos es de que no existen problemas en este sentido, ya que los vecinos ven bien al niño y la actitud que muestran los vecinos es buena y/o normal hacia su hijo. La literatura plantea la importancia que juegan estas redes de apoyo en las familias, pues expresan un alto grado de satisfacción ante el apoyo social, difiriendo del apoyo institucional, ya que las familias no se sienten suficientemente apoyadas por esta estructura, lo cual provoca ansiedad e ira en ellas (Bruns & Foerster, 2011;Steel et al, 2011;Tsibidaki & Tsamparli, 2007).…”

Section: Discussionunclassified

“…El 7.2% no contestó. La teoría plantea la importancia de que la madre se sienta apoyada por su pareja (Bruns & Foerster, 2011;Sánchez, 2006). Actualmente se proyecta que las investigaciones se diseñen mediante la observación de los cambios en las políticas, iniciativas y prácticas que permitan a las familias manejar el cuidado de sus hijos con discapacidad de manera positiva, respetuosa y con empoderamiento.…”

Section: Algunas Verbalizaciones De Las Emociones Positivas Sonunclassified

Caracterización de los conocimientos de las madres sobre la discapacidad de sus hijos y su vínculo con la dinámica familiar.

Amaya

Tomasini

Rueda

et al. 2014

Acta. Colomb. Psicol.

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El propósito del estudio es establecer los conocimientos, la dinámica familiar y comunitaria de madres de hijos con discapacidad que sirvan de base para la instrumentación de programas de intervención. Participaron 42 madres con edades entre 19 y 49 años (M = 31.14) de un Centro de Rehabilitación Infantil perteneciente a la Secretaría de la Defensa Nacional en México. Se utilizó una guía de entrevista semi-estructurada para explorar los conocimientos, la dinámica familiar y comunitaria de las familias. Las madres reportaron que no recibieron preparación de cómo tratar a sus hijos; sin embargo, ellas consideran la importancia de adquirir conocimientos especializados para entender y tratar al menor. Las madres que no tienen los conocimientos necesarios sobre la discapacidad de su hijo no son capaces de entender ni aceptar la condición del niño, conllevando a la negación del problema, inconformidad, culpa y depresión. Se observó en el estudio que una adecuada preparación de la madre después del nacimiento de su hijo, acerca de la discapacidad, puede proveer una mejor interacción y funcionamiento de estas familias. Palabras Clave: Discapacidad, Conocimientos de discapacidad, Dinámica Familiar, Dinámica comunitaria, Madres de hijos con discapacidad. CHARACTERIZATION OF THE KNOWLEDGE OF MOTHERS CONCERNING THEIR CHILDREN´S DISABILITY AND THE RELATION WITH THE FAMILY DYNAMICS AbstractThe purpose of this study is to enquire about the knowledge, as well as about the family and community dynamics of mothers of children with disabilities, as a basis to implement intervention programs. Participants were 42 mothers aged between 19 and 49 years (M= 31.14) who attended a Children´s Rehabilitation Center belonging to the National Defense Secretariat in Mexico [SEDENA, for its Spanish acronym]. Semi-structured interviews were used to assess the mother's knowledge on the disability of the child and the family and community dynamics. Mothers reported receiving no training on how to treat their children, though they considered the importance of acquiring expertise to understand and treat the child. Mothers who do not have the necessary knowledge about their child's disability are not able to understand or accept the child's condition, leading to a denial of the problem, dissatisfaction, guilt and depression. It was noted in the study that proper preparation of the mother after the birth of her child, in terms of the disability can provide a better interaction and functioning of these families.

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“…Items in Section IV (n ¼ 7) request demographic information (e.g., marital status education level). Part II examines sources of family support (eight sections with 56 items [Bruns and Foerster, 2011;Bruns and Schrey, 2012]. Part III of the TRIS Survey is comprised of nine sections, (61 items total).…”

Section: Instrumentationmentioning

confidence: 99%

Nine children over the age of one year with full trisomy 13: A case series describing medical conditions

Bruns

Campbell

2014

American J of Med Genetics Pt A

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Trisomy 13 (Patau syndrome), identified by Patau and colleagues [1960; Lancet 1: 790-793] is the third most common autosomal condition. Population studies indicate less than one in 10 children reaches their first birthday. In the face of mixed findings and recommendations for treatment, additional research is needed to further determine what contributes to longevity and implications for treatment for presenting medical conditions. The purpose of the present study is to report on presenting medical conditions and the presence or absence of the specific conditions (age at survey completion). Data on nine survivors (seven female, two male) with trisomy 13 indicated mean gestational age of approximately 36 weeks, birth weight ranging from 1100 to 3290 g and mean length of 45.3 cm. Length of hospital stay after birth varied. The majority of infants presented with well-known physical characteristics. Medical conditions and their treatment varied at birth and at survey completion. Notably, several infants' cardiac anomalies resolved without surgical intervention. Surgeries were provided for a range of conditions including gastrostomy tube placement to address feeding issues and removal of intestinal blockage. There were no reports of holoprosencephaly. Implications and recommendations are provided.

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‘We've been through it all together’: supports for parents with children with rare trisomy conditions

Cited by 22 publications

References 37 publications

Birth history, physical characteristics, and medical conditions in long‐term survivors with full trisomy 13

Birth history, physical characteristics, and medical conditions in long‐term survivors with full trisomy 13

Caracterización de los conocimientos de las madres sobre la discapacidad de sus hijos y su vínculo con la dinámica familiar.

Nine children over the age of one year with full trisomy 13: A case series describing medical conditions

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