Physical inactivity among parents of children with and without Down syndrome: the National Health Interview Survey.

BACKGROUND: Emerging evidence suggests that parents of children with intellectual disabilities have poorer physical health than parents of typically developing children. However, it is unclear why. The purpose of this study was to examine differences in physical inactivity among a population-based sample of parents of children with and without Down syndrome. METHODS: Data for this analysis come from 11 waves (2005-2016) of the National Health Interview Survey, a U.S. nationally representative survey. Minutes per week of leisure-time physical activity were ascertained by self-report with physical inactivity defined as reporting no leisure-time physical activity. Parents were classified as (1) parents of typically developing children, (2) parents of children with Down syndrome, (3) parents of children with a developmental disability that had a high functional impact (autism, cerebral palsy, vision impairment or hearing impairment), (4) parents of children with an intellectual or developmental disability, but who did not have Down syndrome or a high-impact developmental disabilities, and (5) parents of children with other special health care needs. RESULTS: Parents of children with Down syndrome were more likely to be physically inactive compared with parents of typical children (odds ratio [OR]: 1.51 [95% confidence interval, CI: 1.08, 2.12]) and had the lowest likelihood among all subgroups of parents to children with developmental disabilities or special health care needs. Parents of children with Down syndrome also had a significantly greater likelihood of being physically inactive compared with parents of children with other special health care needs (OR: 1.56 [95% CI: 1.11, 2.19]), with developmental disabilities without high functional impact (OR: 1.58 [95% CI: 1.12, 2.24]) and with developmental disabilities with high functional impact (OR: 1.46 [95% CI: 1.03, 2.08]). CONCLUSION: Parents of children with Down syndrome are more likely to be physically inactive compared with parents of typically developing children and parents of children with other developmental disabilities or special health care needs. These findings suggest that parents of children with Down syndrome are a population in urgent need for interventions/programmes that promote physical activity, particularly as child well-being is linked to caregiver health.

Anesthetic Management of Elderly Patients With Down Syndrome: A Case Report.

In 1930, the life expectancy of patients with Down syndrome was about 10 years; today, their life expectancy is more than 60 years. With aging, there is an increased need for anesthesia and surgery. There is, however, no published information regarding the anesthetic management of older adults with Down syndrome. In this report, we described the anesthetic management of a 50-year-old woman with Down syndrome undergoing major cervical spine surgery. Components of the anesthetic that we thought would be difficult such as intravenous line placement and endotracheal intubation were accomplished without difficulty. Despite our best efforts, our patient nevertheless experienced both emergence delirium and postoperative vomiting. We advocate that physicians, advanced practice providers, and registered nurses be aware of the unique perianesthesia needs of older patients with Down syndrome.

Parenting behaviour and executive function in children with Down syndrome.

BACKGROUND: Parenting behaviours influence many domains of child development, and recent work has demonstrated the specific effects of parenting on the development of executive function (EF) abilities. The relationship between parent-child interaction patterns and EF has been examined in typically developing (TD) children but has not yet been examined in dyads where the child has a diagnosis of Down syndrome (DS). METHOD: The current study examines the differences in patterns of parenting behaviours between DS dyads and dyads with TD children equated on nonverbal mental age. DS dyads (n = 42), child ages 59 to 118 months, and TD dyads (n = 28), child ages 30 to 49 months, participated in a modified version of the Parent-Child Challenge Task. Parent directive and teaching behaviours were coded, along with child compliance and noncompliance. Child participants also completed a laboratory measure of inhibition and working memory, and parents completed the Behaviour Rating Inventory of Executive Function-Preschool. RESULTS: There was a greater frequency of parenting directives and child compliance in the DS dyads, and parents of children with DS were more likely to follow child compliance with directives than parents of TD children. In both groups, parenting directive behaviour was a significant predictor of child EF laboratory performance. CONCLUSIONS: Results characterise the relationship between specific parenting behaviours and child EF in DS and TD dyads. The implications for parent training and intervention are discussed.

Aging Individuals With Down Syndrome and Dementia as Teachers: Learnings from Staffin a Developmental Disability Program in Long-Term Care.

Older adults with Down syndrome (DS) and dementia are an emerging sub-population. With much longer life spans than decades ago, issues have arisen as to where these aging adults will live and how nurses and other staff in facilities can provide effective care to these individuals. The current article presents a research study that examined the learnings of nurses and staff members working within a western Canadian program for older adults with DS and dementia. These learnings include: the importance of learning from each other; importance of collaboration; how individuals with developmental disabilities communicate; older adults with DS and dementia differ from older adults with dementia; and residents' impact on staff. [Journal of Gerontological Nursing, 45(5), 17-22.].

Transient Myeloproliferative Disorder: An Update for Neonatal Nurses.

Down syndrome (DS) is a well-known genetic disorder that affects 700-1,000 infants per year. One particular comorbidity of DS is transient myeloproliferative disorder (TMD), a disease characterized by leukocytosis with elevated blast counts. Approximately 10 percent of DS infants develop TMD, which usually manifests during the first week of life and can lead to an extended hospitalization in a NICU. In addition to hallmark hematologic findings, other manifestations include jaundice, conjugated hyperbilirubinemia, hepatomegaly, and pericardial or pleural effusions. TMD generally resolves spontaneously in the first three months of life with the provision of timely medical management; however, survivors are at increased risk of developing acute myeloid leukemia (AML). Neonatal nurses need to have knowledge of this disorder to facilitate screening of DS infants and optimize family education and coordination of care.

Being a dad to a child with Down's syndrome: Overcoming the challenges to adjustment.

BACKGROUND: Historically, research exploring the impact of having a child with an Intellectual Disability (ID), has focussed exclusively on mothers. The present study aimed to investigate fathers' experiences of parenting a child with Down's syndrome (DS), their contributions, influences on family functioning and inclusion in their child's support provision. METHOD: Semi-structured interviews were conducted with 15 fathers. Interviews were analysed using Grounded Theory (GT). RESULTS: Fathers' adjustment appeared to be on a fluid trajectory with three key categories influencing this: "Accommodating the Child," "Adapting the Parental/Spousal Role" and "Adapting Society." CONCLUSIONS: The accounts uncovered fathers' adjustment trajectory to parenting a child with DS, concluding that despite practical and emotional challenges, fathers employed strategies to achieve positive adjustment. Fathers identified the need for services to recognize their role and involve them in their child's support provision. Implications for clinical practice and future research are discussed.

Sleep problems in adults with Down syndrome and their family carers.

BACKGROUND: Sleep disturbance is common and can have harmful psychological and physical effects. While sleep problems in children with Down syndrome (DS) have received a reasonable amount of attention, very little has been written about this topic in adults with DS. METHOD: The present study consisted of an online survey completed by 100 family carers of adults with DS. RESULTS: High rates of sleep problems of different types were reported in the adults with DS comparable to those found in children with DS in previous research. Significant associations were found between sleep problems and body mass index, excessive daytime sleepiness and a range of health and psychological problems. Low rates of treatments for sleep problems were reported. The majority of family caregivers felt their own sleep was affected. CONCLUSIONS: Sleep problems in adults with DS are common and varied. Assessment and treatment of such problems are likely to improve quality of life.

Comparing parental stress of children with neurodevelopmental disorders: The case of Williams syndrome, Down syndrome and autism spectrum disorders.

BACKGROUND: Although parental stress is higher for children with neurodevelopmental disorders (NDs), it is unclear how this stress compares to more common NDs. The current study compared stress in parents of children with Williams syndrome (WS), Down syndrome (DS) and autism spectrum disorders (ASD). The impact of individual and contextual factors was also explored. METHOD: Parents of children with WS (n = 107), DS (n = 79) and ASD (n = 79) completed a background questionnaire, a parental stress questionnaire and a satisfaction with life questionnaire. RESULTS: Although all groups displayed similar levels of parental stress, the factors that influenced this stress differed between the groups. There were also differences for life satisfaction and relationships between parental stress and individual and contextual factors. CONCLUSIONS: Although parents of children with NDs are not at an increased risk of parental stress, the results suggest that interventions should be syndrome-specific.

Listening to fathers: Personal impacts of raising children with Down syndrome.

The aim of this qualitative study was to contribute to an understanding of how biological fathers (N = 311) believe having a child with Down syndrome has impacted them personally. Thematic analysis was used to derive meaning from responses to open-ended survey questions. In addition to describing personal impacts, fathers shared how their perspectives shifted over time and possible contributory factors. The results indicated that fathers were often deeply impacted by the experience of parenting a child with Down syndrome. The vast majority expressed positive changes in terms of personal growth; however, it is important to note that positive emotions often coexisted with more distressing ones such as anxiety and loss. Most fathers reported a positive trajectory in terms of their adjustment and many attributed it to learning that their negative assumptions about people with Down syndrome were not accurate. Implications for practitioners and researchers are discussed.

Is the duty of candour under threat?

Emeritus Professor Alan Glasper, University of Southampton, dissects the case of paediatrician Dr Hadiza Bawa-Garba and registered nurse Isabel Amaro, and how their convictions might affect the duty of candour legislation.

Functional independence of Taiwanese children with Down syndrome.

AIM: Information regarding the functional strengths and weaknesses of children with Down syndrome is important for early intervention programmes and for agencies providing family support and educational services. METHOD: This study used the Functional Independence Measure for Children (WeeFIM) questionnaire for the parents or caregivers of 166 Taiwanese children (101 males and 65 females; median age 12y 7mo; range 3y 2mo-19y 1mo) with Down syndrome to assess their functional skills. RESULTS: Out of a potential score of 126, the mean total WeeFIM score was 101.2. There was no statistically significant difference between the scores from the male and female participants (100.4 [SD 21.4] vs 102.4 [SD 24.7]; p>0.05). The mean scores for three domains (self-care, mobility, and cognition) were 45, 33, and 23 respectively (maximum of 56, 35, and 35 respectively). Performance was strongest in the mobility domain and weakest in the cognition domain. The total WeeFIM scores and 18 subscores for the three domains all positively correlated with age (p<0.05). INTERPRETATION: For children with Down syndrome, some support and supervision is required for cognition and self-care tasks. The WeeFIM questionnaire may be useful for identifying the strengths and limitations of children with developmental disabilities and their families.

Court holds that patient in intensive care unit was not deprived of her liberty.

Richard Griffith, Senior Lecturer in Health Law at Swansea University, discusses the difficult issue of deprivation of liberty when somebody lacks the capacity to make decisions about their own treatment.

The influence of self-esteem and social support on the relationship between stigma and depressive symptomology in parents caring for children with intellectual disabilities.

BACKGROUND: This study explored the synergistic relationship between stigma, self-esteem and social support, as predictors of depressive symptomology in parents of children with disabilities (e.g. Autism and Down syndrome). METHOD: One hundred and seventy-three parents (115 parents of children with disabilities and 58 control parents) completed measures of perceived stigma, self-esteem, social support and depressive symptoms. RESULTS: Parents of children with disabilities reported more depressive symptomology; additionally, stigma, self-esteem and social support were associated with depressive symptomology. Moreover, the association between stigma and depressive symptomology was mediated by self-esteem, i.e. parents who reported higher stigma were lower on self-esteem and more depressed. Further, this path varied as a function of emotional support. CONCLUSION: Results highlight the need for tailored interventions that offer parents effective strategies in dealing with stigma through social support and self-esteem.

The triple challenges associated with age-related comorbidities in Down syndrome.

BACKGROUND: Major increases in the survival of people with Down syndrome during the last two generations have resulted in extended periods of adulthood requiring specialist care, which in turn necessitates greater understanding of the nature, timing and impact of comorbidities associated with the disorder. METHOD: The prevalence of five comorbidities reported as common in adults with Down syndrome, visual impairment, hearing impairment, epilepsy, thyroid disorders and dementia was assessed by decade of life. RESULTS: From early adulthood, people with Down syndrome are at enhanced risk of developing new comorbidities and they may present with multiple conditions. Three specific challenges are identified and discussed: are comorbidities detected in a timely manner, is the clinical progress of the disorder adequately understood, and who is responsible for the provision of care? CONCLUSIONS: Further detailed investigations into the development and treatment of comorbidities across the lifespan are needed for a successful longitudinal approach to healthcare in people with Down syndrome. Implementation of this approach will better inform healthcare providers to ensure continuity of care with advancing age.

Special needs: caring for the older adult with Down syndrome.

Over the last 30 years, the life expectancy of people with Down syndrome has increased dramatically. Significant medical advances have allowed affected persons to be seen more in the hospital setting, making it imperative that nurses understand their health care needs in order to provide positive health outcomes.

Survey of second-trimester maternal serum screening in Japan.

AIM: Second-trimester maternal serum screening (MSS) is the predominant form of prenatal screening in Japan. We hypothesize that patient education and physician knowledge of Down syndrome (DS) screening are insufficient to provide adequate information regarding prenatal screening in Japan. MATERIAL AND METHODS: In-person or telephone interviews with medical personnel were conducted at 25 medical facilities utilizing Afp(4) (Esoterix Genetic Laboratories, LLC, a wholly-owned subsidiary of Laboratory Corporation of America Holdings) second trimester screening. We explored how medical facilities provided information about the MSS process to pregnant women. RESULTS: Before prenatal testing, 60% of medical facilities spent an average of less than 5 min per patient explaining the MSS process. The option of amniocentesis for chromosomal aneuploidy was explained at nearly all facilities, but only 60% explained the risk of amniocentesis. Ultrasound examination for open neural tube defects was explained only at half the facilities. Only five of 25 (20%) medical practitioners explained the possibility of having congenital disorders fetus. CONCLUSION: This study revealed that most obstetricians in Japan do not provide their patients with sufficient information about MSS.

Guarding against discriminatory treatment decisions.

This article studies a case in which a 52-year-old male patient has early onset dementia, Down's syndrome and an associated heart condition, for which he is prescribed warfarin and digoxin. A district nurse, who is an independent prescriber, monitors and adjusts his medication and takes the required blood sample. The staff at the care home where the patient lives report that the patient is spitting out his medication and they have not been able to persuade him to swallow his tablets for a week. Despite the patient being assessed as lacking capacity to decide treatment decisions, the care home staff argue that his refusal to take medication should be respected and the medication discontinued. Although withdrawing the medication would make caring for the patient less challenging, the district nurse assesses the legal obligations that must be considered before this decision can be considered lawful.

Experiences of supporting people with Down syndrome and Alzheimer's disease in aged care and family environments.

BACKGROUND: Research addressing the experiences of families of adults with Down syndrome and Alzheimer's disease in seeking diagnosis and gaining support is limited. The aim of this study was to gain a greater understanding of these processes by exploring the experiences of families and carers in supporting people with Down syndrome and Alzheimer's disease who had lived most or all of their lives with family. METHOD: Three detailed case studies were created from multiple data sources, and then analysed thematically. RESULTS: Families of adults with Down syndrome experienced stress and confusion as they negotiated a service system poorly equipped to meet their needs and professionals more focused on longstanding disability than the recent diagnosis of Alzheimer's disease. Such overshadowing led to mismanagement by services. CONCLUSIONS: This research advances understandings of the support needs of people with Down syndrome and Alzheimer's disease and their families. It exposes gaps in the service system.