Browse
Submit Data
Databases
API
Help

Dataset Information

0 Views

0 Connections

0 Citations

0 Reanalyses

0 Downloads

Omics score: 0

Having a son or daughter with Down syndrome: perspectives from mothers and fathers.

ABSTRACT: This study asks parents who have children with Down syndrome (DS) how they feel about their lives so that such information could be shared with expectant couples during prenatal counseling sessions. A valid and reliable survey instrument was mailed to 4,924 households on the mailing lists of six non-profit DS organizations. Of the 2,044 respondents, 99% reported that they love their son or daughter; 97% were proud of them; 79% felt their outlook on life was more positive because of them; 5% felt embarrassed by them; and 4% regretted having them. The parents report that 95% of their sons or daughters without DS have good relationships with their siblings with DS. The overwhelming majority of parents surveyed report that they are happy with their decision to have their child with DS and indicate that their sons and daughters are great sources of love and pride.

SUBMITTER: Skotko BG

PROVIDER: S-EPMC3353148 | biostudies-literature | 2011 Oct

REPOSITORIES: biostudies-literature

ACCESS DATA

Json Xml

Publications

Having a son or daughter with Down syndrome: perspectives from mothers and fathers.

Skotko Brian G BG Levine Susan P SP Goldstein Richard R

American journal of medical genetics. Part A 20110913 10

This study asks parents who have children with Down syndrome (DS) how they feel about their lives so that such information could be shared with expectant couples during prenatal counseling sessions. A valid and reliable survey instrument was mailed to 4,924 households on the mailing lists of six non-profit DS organizations. Of the 2,044 respondents, 99% reported that they love their son or daughter; 97% were proud of them; 79% felt their outlook on life was more positive because of them; 5% felt ...[more]

PMID: 21915989

Similar Datasets

Having a brother or sister with Down syndrome: perspectives from siblings.

Project description:This study asks brothers and sisters about their feelings and perceptions toward their sibling with Down syndrome (DS). We analyzed valid and reliable surveys from 822 brothers and sisters whose families were on the mailing lists of six non-profit DS organizations around the country. More than 96% of brothers/sisters that responded to the survey indicated that they had affection toward their sibling with DS; and 94% of older siblings expressed feelings of pride. Less than 10% felt embarrassed, and less than 5% expressed a desire to trade their sibling in for another brother or sister without DS. Among older siblings, 88% felt that they were better people because of their siblings with DS, and more than 90% plan to remain involved in their sibling's lives as they become adults. The vast majority of brothers and sisters describe their relationship with their sibling with DS as positive and enhancing.

| S-EPMC3348944 | biostudies-literature

Coparenting in the feeding context: perspectives of fathers and mothers of preschoolers.

Project description:PurposeThis study examined how fathers and mothers coparent around child feeding.MethodsFather-mother pairs (N = 30) of preschool-aged children (M child age = 4.1 years old) participated in joint or group interview sessions.ResultsThree themes emerged from the qualitative analysis: (1) couples' division of labor regarding feeding tasks seemed to align with stereotypical gender roles; (2) couples noted that they attempted healthier family eating habits in comparison to families of origin and recognized the influence of extended family on their attempts at healthier feeding; (3) couples agreed on the importance of family mealtime, routines, and healthy meals, yet disagreed on strategies to limit unhealthy foods and achieve harmonious family meals.ConclusionsThis study identified processes of coparenting and child feeding areas that were particularly challenging to manage among parents, which could be important targets for childhood obesity interventions.Level of evidenceV, descriptive study.

| S-EPMC6906266 | biostudies-literature

A qualitative exploration of mothers' and fathers' experiences of having a child with Klinefelter syndrome and the process of reaching this diagnosis.

Project description:Klinefelter syndrome (KS) is a common genetic condition that is currently under-diagnosed. The phenotype is broad, with physical, medical and psychosocial features ranging from mild to severe. When a child is diagnosed with KS, the parents may spend months to years searching for a diagnosis. This study used a qualitative methods approach to explore parents' experiences of having a child with KS and receiving a diagnosis. Fifteen semistructured one-to-one in-depth interviews were conducted to explore their experiences and views. The interviews were then transcribed, coded and thematically analysed. The interviews revealed that parents had diverse experiences related to: the timing of the diagnosis of their child and reasons why their child was investigated for KS; the information that was provided at the time of diagnosis; the supports that were available and the concerns that parents held for the future of their child. The conclusions from this study were that parents' experiences of having a child with KS and receiving a diagnosis were complex and multifaceted. This experience was shaped by the timing of when the diagnosis was received, who provided the diagnosis, what information was provided from health-care professionals and that which parents may have encountered on the internet. The long-term experiences for parents were also impacted by the level of support they received. These findings have implications for the process by which KS is recognised by the health-care community and supports available for families.

| S-EPMC3865389 | biostudies-literature

Assessing Early Supportive Care Needs among Son or Daughter Haploidentical Transplantation Donors.

Project description:Increasingly, adolescent, young adult, and adult children are relied upon as donors for their parents undergoing blood and marrow stem cell transplant. How family functioning impacts donors' decision making and whether haploidentical donor children have unique supportive care needs is unknown. In this qualitative research study, we conducted 15 semistructured telephone interviews among individuals who underwent blood or marrow stem cell donation for their parent. Interviews explored donors' perspectives of the transplant experience across the trajectory from screening through early post-transplant follow-up and elicited unmet needs. Major themes included: (1) perception of choice, (2) act of giving back, (3) burdens of donation, (4) anticipated health benefit to parent, and (5) impact of donation on parent/child relationship. The majority of participants described high family functioning, but strain was also evident. Family functioning rarely was reported as affecting the decision to donate, with all donors expressing a sense of obligation. Participants were overwhelmingly satisfied with their decision and the ability to give back to their parent. Suggestions for the health care team to improve the donation experience focused on increased education about potential delays in screening, better description of possible complications for recipients, and provision of emotional support following donation.

| S-EPMC7609517 | biostudies-literature

Prenatal testing for Down syndrome: the perspectives of parents of individuals with Down syndrome.

Project description:This exploratory, descriptive study examined the views and opinions of parents of individuals with Down syndrome (DS) related to prenatal testing for DS and the use of age-based criteria to determine eligibility for this testing. This survey-based study was designed in collaboration with parents of individuals with DS and the British Columbia-based Lower Mainland Down Syndrome Society (LMDSS). The survey was a 26-item, self-report questionnaire, which was distributed by the LMDSS. Out of the 246 potentially eligible individuals that were mailed surveys, 101 participants returned their completed surveys. The availability of prenatal screening and diagnostic testing for DS was perceived positively by 55.1% and 64.7% of parents, respectively. More than half (60.2%) of participants felt that prenatal diagnostic testing for DS should be available to all pregnant women, regardless of age. In this study, views of Canadian parents of individuals with DS aligned with the prenatal testing policy recently adopted in the USA (whereby any woman, regardless of age or risk factors, can opt for prenatal diagnostic testing) rather than with new Canadian policy (whereby eligibility for diagnostic testing is no longer offered on the basis of age, but on the basis of other risk factors).

| S-EPMC3958964 | biostudies-literature

Mothers' and fathers' parenting attitudes during COVID-19.

Project description:Attitudes about parenting are derived from early socialization of gender role norms and often include intensive parenting beliefs, which give mothers an outsized role in parenting. This study examined the differences in intensive parenting beliefs among cisgender mothers and fathers during the United States COVID-19 response. Data from a sample of 1048 mothers and fathers were collected during March and April 2020 to understand parenting beliefs. Results indicated that some demographic factors, including gender and ethnicity, impact intensive parenting beliefs. Additionally, the number of COVID-19 cases in a state, along with school closure length, was related to intensive parenting beliefs.Supplementary informationThe online version contains supplementary material available at 10.1007/s12144-021-01605-x.

| S-EPMC8012411 | biostudies-literature

Evidence for increased cardiovascular events in the fathers but not mothers of women with polycystic ovary syndrome.

Project description:BackgroundPolycystic ovary syndrome (PCOS) is a familial syndrome, associated with multiple cardiovascular disease (CVD) risk factors. Thus, parents of affected women may have a higher prevalence of CVD events than the general population.MethodsPCOS probands (n = 410) and their participating parents (n = 180 fathers and 211 mothers) were queried for CVD events in themselves and non-participating family members. In order to include the family CVD history of all parents, agreement between the proband and parental reports of CVD events was assessed. Estimated 10-year coronary heart disease (CHD) risk was calculated using the Framingham risk calculator. The National Health and Nutrition Examination Survey (NHANES) 2001-2002 database was used to generate gender, age and body mass index-relevant population parameters of CVD prevalence in the USA population.ResultsNinety-eight percent of the parents' self-reporting of CVD events agreed with the proband's report of parental heart attack history [Kappa = 0.82; 95% CI: (0.69, 0.94)] and 99% with parental stroke history [Kappa = 0.79; 95% CI: (0.62, 0.97)]. Fathers of women with PCOS had a higher prevalence of heart attack and stroke compared with the reference NHANES population (heart attack: 11.1 versus 5.3%, P < 0.0001; stroke: 3.0 versus 1.0%, P = 0.002). Fathers of women with PCOS had an elevated 10-year risk for CHD (11.5 versus 9.9% in NHANES, P = 0.03). No statistically significant increased prevalence of CVD events or 10-year risk was noted in probands or mothers.ConclusionsFathers, and not mothers, may be disproportionately burdened with CVD in PCOS families. The strengths of this study include the size of our cohort, the consistent phenotyping and the validation of proband's reporting of parental CVD events.

| S-EPMC3137384 | biostudies-literature

Altered LINE-1 Methylation in Mothers of Children with Down Syndrome.

Project description:Down syndrome (DS, also known as trisomy 21) most often results from chromosomal nondisjunction during oogenesis. Numerous studies sustain a causal link between global DNA hypomethylation and genetic instability. It has been suggested that DNA hypomethylation might affect the structure and dynamics of chromatin regions that are critical for chromosome stability and segregation, thus favouring chromosomal nondisjunction during meiosis. Maternal global DNA hypomethylation has not yet been analyzed as a potential risk factor for chromosome 21 nondisjunction. This study aimed to asses the risk for DS in association with maternal global DNA methylation and the impact of endogenous and exogenous factors that reportedly influence DNA methylation status. Global DNA methylation was analyzed in peripheral blood lymphocytes by quantifying LINE-1 methylation using the MethyLight method. Levels of global DNA methylation were significantly lower among mothers of children with maternally derived trisomy 21 than among control mothers (P = 0.000). The combination of MTHFR C677T genotype and diet significantly influenced global DNA methylation (R2 = 4.5%, P = 0.046). The lowest values of global DNA methylation were observed in mothers with MTHFR 677 CT+TT genotype and low dietary folate. Although our findings revealed an association between maternal global DNA hypomethylation and trisomy 21 of maternal origin, further progress and final conclusions regarding the role of global DNA methylation and the occurrence of trisomy 21 are facing major challenges.

| S-EPMC4446367 | biostudies-literature

Socio-demographic Correlates of Fathers' and Mothers' Parenting Behaviors.

Project description:In the present study, we investigated whether fathers' and mothers' parenting behavior is differentially related to parental factors (such as age and employment), child factors (age and gender) as well as social support. Parents reported on their use of a broad range of parenting behaviors, including affection, responsivity, explaining, autonomy, support, rewarding, and punishing. We used survey data from the Netherlands for 1197 mothers and 903 fathers of children aged 2 to 17. Seemingly unrelated regression analyses were conducted to combine the regression results on the separate subsamples (fathers and mothers) and to test for differences in the coefficients between those subsamples. Our expectation that the parenting behavior of fathers is more dependent on parents' characteristics, children's characteristics, and social support than that of mothers was only partly confirmed by the results of our analysis. In general, our results suggest that fathers' parenting behaviors seem to be associated with parental and child characteristics and contextual factors in ways that are similar to how these factors are associated with mothers' parenting behaviors. Results are discussed in relation to the roles and expectations associated with motherhood and fatherhood.

| S-EPMC5993847 | biostudies-other

Son or Daughter Care in Relation to Self-Reported Health Outcomes for Older Adults in China

Project description:Objectives Parental care in China is traditionally provided by sons. In recent decades—partly due to the One-Child Policy but also economic development and urbanization—significant changes have occurred with more and more parents receiving care from daughters. We investigate the disparities in outcomes of eldercare provided by son(s) and daughter(s). Methods Our study compares the self-reported health (SRH) status of parents who receive eldercare from daughters and sons in China, analyzing the harmonized 2013, 2015, and 2018 waves of CHARLS with random-effects logistic estimates. Results Our results show that the SRH status of parents who receive care from their sons is greater than those cared for by their daughters. This disparity is greater in rural areas, for mothers, and poorer families. Discussion The One-Child Policy was more effective in urban areas, reducing both the availability of sons and cultural son preference. Higher levels of education received by girls in urban settings increases their employability and thus their ability to materially care for their parents. However, traditional norms and gender differences in social economic statuses still persist in rural areas, leading to higher SRH status of those cared for by sons, especially amongst those who are heavily dependent on their children: mothers or parents with less wealth.

| S-EPMC8805801 | biostudies-literature

OmicsDI is part of the ELIXIR infrastructure

OmicsDI is an Elixir interoperability service. Learn more ›

Tweets

OmicsDI Databases

PRIDE
PeptideAtlas
MassIVE
JPOST Repository
Physiome Model Repository

EGA
EVA
ENA
LINCS
PAXDB
Cell Collective

MetaboLights
Metabolomics Workbench
MetabolomeExpress
GNPS
BioModels
FAIRDOMHub

ArrayExpress
dbGaP
ExpressionAtlas
GEO
NODE

Information

Databases
Help
API
Contact us
Code on GitHub
Terms of use
Submit Data