Parenting children with Down syndrome: Societal influences

Huiracocha, Lourdes; Almeida, Carlos Manuel Torres; Huiracocha, Karina; Arteaga, J Q Yannett; Arteaga, Andrea; Blume, Stuart

doi:10.1177/1367493517727131

Cited by 40 publications

(69 citation statements)

References 33 publications

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“…All these facts affect the quality of communication with the child's family. This finding is very important considering that a sensitively givendiagnosis of Down syndrome can offer parents hope and facilitate its acceptance (Huiracocha et al, 2017).…”

Section: Discussionmentioning

confidence: 98%

“…Thus the information given did not allow them to cope with the new situation, harmed the formation of an attachment with the child, and prevented families from overcoming the sadness of the situation (Gromošová, 2017;Nunes and Dupas, 2011). In their study, Huiracocha et al (2017) report that the unequal status between doctors and parents may be at the core of insufficient and inappropriate information provided to parents (Peck and Conner, 2011). On the other hand, doctors also indicate that gicing the diagnosis of Down syndrome to parents is very stressful for them (Vehkakoski, 2007), which may be due to the fact that, according to the Pickering and Busse study (2010), doctors and healthcare professionals lack skills in sensitive communication and thus in announcing the diagnosis.…”

Section: Discussionmentioning

confidence: 99%

“…According to Sikorová and Polochová (2014), getting help from the closest social support network, seeking spiritual support, re-defining the stressful event, looking for resources in society through civic associations, self-help groups or social and health services are some of the strategies that help to cope with stress and the burden of caring for children with disabilities on the part of parents. Research has shown that the most widely used coping strategies of parents of children with chronic illness or disability in managing their stress is the ability to reframe the difficult life situation and gain social support (Hatzmann et al, 2009;Huiracocha et al, 2017;Luther et al, 2005). Sobotková (2004) also points out that in the case of a situation such as the birth of a child with a disability, the family should strive to mobilize and develop all its family forces and sources of support.…”

Section: Discussionmentioning

confidence: 99%

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Research into the needs of families who have children with Down syndrome (in the Slovak framework)

Slaná¹,

Letovancová²,

Dobríková³

et al. 2020

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Objective: The objective of the research was to identify the current needs of parents who have children with Down syndrome (DS); needs which were not satisfied at the time when DS was diagnosed in the child, and to describe the nature of the relationship between the needs of parents who have children with DS and their quality of life. Methods: Two valid standardized scales were applied in the research: the Family Needs Survey (FNS) and the Family Quality of Life Scale (FQOL). The research sample consisted of 102 parents of children with DS. The obtained data were processed using content analysis of data and statistical data processing through SPSS. Results: The research shows that it was right after the birth of their DS child that parents felt they most lacked information and psychological assistance. As their children grew older, they needed more formal or informal support, financial assistance, engagement of their DS child in the educational process, and they also felt a shortage of time. At the same time, a strong factor with a positive impact on the needs of parents of DS children (U = 448; p < 0.05) and their quality of life (U = 146; p < 0.05) was the support of grandparents and self-help communities (α = 52.78; p < 0.05). The higher the quality of the parents life, the lower the needs in terms of family functioning (r s = -0.267; p > 0.01), use of community services (r s = -0.278; p > 0.01) or the necessity to acquaint the community with the child's disability (r s = -0.280; p > 0.01). Conclusions: In order to satisfy the needs of families with DS children, formal and informal support is equally important. The types of support vary throughout the children's lives. Services provided to these families should not only be complex, but also coordinated and continuous.

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Section: Discussionmentioning

confidence: 98%

Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

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Research into the needs of families who have children with Down syndrome (in the Slovak framework)

Slaná¹,

Letovancová²,

Dobríková³

et al. 2020

Kontakt

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“…M a n y s t u d i e s h a v e e m p h a s i z e d t h e importance of doctors having a sensitive and appropriate manner when informing parents about a diagnosis of DS. 4,8,9,23 Unemotional, rude, and careless doctors caused distress among mothers. In this study, approximately threequarters of the mothers stated that they were uncomfortable with the negative attitudes of the doctor at the time of the diagnosis, with the remaining mothers stating that the diagnosis was given in an appropriate manner.…”

Section: How Was It Told? (How Was the Attitude Of The Person Giving mentioning

confidence: 99%

Experience of mothers with Down syndrome children at the time of diagnosis

et al. 2019

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Introduction. Down's syndrome (DS) is a common genetic disorder. The families of children with DS generally do not receive sufficient information at the time of the diagnosis. They are dissatisfied with the manner of healthcare professionals. The objective was to evaluate the experiences of mothers of children with DS at the time of the diagnosis and the communicative attitudes of healthcare professionals. Population and methods. Mothers who had children with Down syndrome were included. The experiences of the mothers at the time of diagnosis and the attitudes of the healthcare professionals were evaluated by a semistructured interview. Results. The study sample was 43 mothers. Eight children had been diagnosed with DS prenatally, and 35 had been diagnosed postnatally. Eighteen of the mothers had received the diagnosis in a pediatric clinic, and 16 had been told of the diagnosis in an obstetric clinic. More than half the mothers had received the first information about their child's diagnosis from a pediatrician. Only five of the 43 mothers had received detailed information. Twenty-three of 32 mothers said that they were met with a negative attitude. Generally, the time put aside to inform the families about the diagnosis was less than 5 min. Conclusions. Mothers of DS children want more information about DS from healthcare professionals. Furthermore, they want this information to be delivered in a supportive and sensitive manner. Healthcare professionals, especially pediatricians need to allocate sufficient time to discuss DS and its challenges with the family.

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“…It has an incidence of one in 600 to 800 births, regardless of ethnicity, gender or social class (4,10) . It is often diagnosed at birth, causing frustration to parents who are not prepared to deal with a disabled baby (11) .…”

Section: Introductionmentioning

confidence: 99%

Fatores facilitadores, principais dificuldades e estratégias empregadas no aleitamento materno de bebês com síndrome de Down: uma revisão sistemática

Evangelista¹,

Furlan

2019

Audiol., Commun. Res.

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RESUMO Objetivo Investigar, na literatura, as principais dificuldades encontradas no aleitamento materno de bebês com síndrome de Down, os fatores facilitadores e as estratégias utilizadas para melhorar a amamentação desses bebês. Métodos Foi realizada uma revisão sistemática nas bases de dados PubMed, SciELO e BVS. Os termos utilizados foram síndrome de Down e aleitamento materno e seus correspondentes em inglês e espanhol. Critérios de seleção: Foram incluídos artigos originais que abordaram o aleitamento materno na síndrome de Down, publicados em português, inglês ou espanhol, de janeiro de 1998 a dezembro de 2018. Foram consideradas informações referentes ao ano de publicação, país de realização da pesquisa, amostra, dificuldades percebidas na amamentação, fatores facilitadores, estratégias, metodologia e resultados. Resultados Foram encontradas 758 referências, das quais, seis contemplaram os critérios de seleção propostos. Estado emocional materno frente ao impacto da notícia, especificidades do bebê, dificuldades de sucção, internações frequentes e falta de apoio e conhecimento por parte dos profissionais de saúde foram aspectos que dificultaram a amamentação. Os principais fatores facilitadores citados foram experiência prévia e apoio familiar e profissional. Como estratégias diretas, foram apontadas a estabilização da cabeça e da mandíbula do bebê durante a mamada. As estratégias indiretas citadas relacionaram-se à capacitação profissional e intervenção multidisciplinar precoce. Conclusão Concluiu-se que as dificuldades na amamentação são provenientes da condição do bebê e da mãe. Experiência materna prévia e apoio familiar foram citados como facilitadores do aleitamento. As principais estratégias recomendadas foram indiretas e relacionadas com melhoria do sistema de saúde.

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Parenting children with Down syndrome: Societal influences

Cited by 40 publications

References 33 publications

Research into the needs of families who have children with Down syndrome (in the Slovak framework)

Research into the needs of families who have children with Down syndrome (in the Slovak framework)

Experience of mothers with Down syndrome children at the time of diagnosis

Fatores facilitadores, principais dificuldades e estratégias empregadas no aleitamento materno de bebês com síndrome de Down: uma revisão sistemática

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