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https://www.readbyqxmd.com/read/29154492/exploring-factors-that-impact-activity-participation-of-children-and-adolescents-with-severe-developmental-disabilities
#1
A Taheri, A Perry, P Minnes
BACKGROUND: Despite the benefits of social participation, children and adolescents with developmental disabilities (DD) are often excluded from taking part in social activities. There is a gap in the literature about the factors that contribute to adequate participation of children with severe DD in particular and the barriers to their participation. Taking an ecological perspective, the purpose of this study was to examine child, family and community variables that may impact the activity participation of children and adolescents with severe DD...
December 2017: Journal of Intellectual Disability Research: JIDR
https://www.readbyqxmd.com/read/29153009/mothers-perspectives-on-the-lived-experience-of-children-with-intellectual-disability-and-challenging-behaviour
#2
Joann Kiernan, Duncan Mitchell, Jois Stansfield, Carol Taylor
Children with intellectual disability and behavioural needs (challenging behaviour) are vulnerable to exclusion from services and communities. The situation is exacerbated by difficulties in accessing appropriate support and services to effectively meet the needs of children and carers. Family perspectives on the 'lived experience' of children can provide insight into how behavioural needs can affect their ability to access everyday experiences. Semi-structured interviews were conducted with mothers of children with intellectual disabilities and challenging behaviours...
January 1, 2017: Journal of Intellectual Disabilities: JOID
https://www.readbyqxmd.com/read/29148115/the-actionability-of-exome-sequencing-testing-results
#3
Tanya Stivers, Stefan Timmermans
Genomic tests such as exome sequencing have recently become an option for diagnosing patients. The tests allow clinical geneticists to sequence the majority of patients' disease causing genetic variants. As a new technology, exome sequencing confronts the question of what the benefit is of this increased genetic information. Against a narrow perspective of clinical utility that emphasises tangible improvements in a patient's disease management, professional organisations have argued that genomic sequencing should be considered beneficial if it helps families and society...
November 2017: Sociology of Health & Illness
https://www.readbyqxmd.com/read/29145013/parenting-and-family-adjustment-scales-pafas-validation-of-a-brief-parent-report-measure-for-use-with-families-who-have-a-child-with-a-developmental-disability
#4
Trevor G Mazzucchelli, Julie Hodges, Robert T Kane, Kate Sofronoff, Matthew R Sanders, Stewart Einfeld, Bruce Tonge, Kylie M Gray
BACKGROUND: Children with a developmental disability are three to four times more likely than their typically developing peers of developing significant emotional and behavioural problems. There is strong evidence to suggest that individual biological and psychological factors interact with family functioning to precipitate and perpetuate these problems. AIMS: This study examined the psychometric properties of a brief measure, the Parent and Family Adjustment Scales (PAFAS) for use with parents of children with a developmental disability...
November 13, 2017: Research in Developmental Disabilities
https://www.readbyqxmd.com/read/29140588/family-management-of-childhood-chronic-conditions-does-it-make-a-difference-if-the-child-has-an-intellectual-disability
#5
Marcia Van Riper, George J Knafl, Cecelia Roscigno, Kathleen A Knafl
The purpose of this analysis was to assess the applicability of the Family Management Measure (FaMM) to families in which there was a child with an intellectual disability versus a chronic condition. Drawing on data from 571 parents of children with a chronic physical condition and 539 parents of children with Down syndrome, we compared the two groups across the six FaMM scales. After accounting for the covariate effects of race, ethnicity, family income, and child age, we found significant differences in four of the six FaMM scales, with parents of children with Down syndrome reporting a significantly more positive view on the Condition Management Effort and View of Condition Impact scales and a significantly less positive view on the Child's Daily Life and Condition Management Ability scales than parents of children with a chronic physical condition...
November 15, 2017: American Journal of Medical Genetics. Part A
https://www.readbyqxmd.com/read/29139114/operation-family-caregiver-problem-solving-training-for-military-caregivers-in-a-community-setting
#6
Leisa R Easom, Ke Wang, Renee H Moore, Heqiong Wang, Laura Bauer
OBJECTIVE: This study, conducted over a 2-year period at 9 sites, describes the outcomes of an evidence-based support program, Operation Family Caregiver, to gain an understanding of how a tailored, problem-solving training could assist military caregivers, who provide care and assistance to those injured, ill, or disabled as a result of war. METHOD: A pre-post research design was employed to examine caregiver burden, depression, health complaints, satisfaction with life, children's anxiety, and problem solving among a convenience sample of caregivers of 128 military service members and veterans...
November 15, 2017: Journal of Clinical Psychology
https://www.readbyqxmd.com/read/29132955/injuries-from-physical-abuse-national-survey-of-children-s-exposure-to-violence-i-iii
#7
Thomas R Simon, Anne Shattuck, Akadia Kacha-Ochana, Corinne F David-Ferdon, Sherry Hamby, Megan Henly, Melissa T Merrick, Heather A Turner, David Finkelhor
INTRODUCTION: Official data sources do not provide researchers, practitioners, and policy makers with complete information on physical injury from child abuse. This analysis provides a national estimate of the percentage of children who were injured during their most recent incident of physical abuse. METHODS: Pooled data from three cross-sectional national telephone survey samples (N=13,052 children) included in the National Survey of Children's Exposure to Violence completed in 2008, 2011, and 2014 were used...
November 10, 2017: American Journal of Preventive Medicine
https://www.readbyqxmd.com/read/29130816/the-role-of-perceived-family-social-support-and-parental-solicitous-responses-in-adjustment-to-bothersome-pain-in-young-people-with-physical-disabilities
#8
Jordi Miró, Rocío de la Vega, Kevin J Gertz, Mark P Jensen, Joyce M Engel
PURPOSE: Family social support and parental solicitous responses have been hypothesised to play an important role in paediatric pain. However, research testing the hypothesised associations between these social domains and measures of adjustment to pain in youths with disabilities and chronic pain is non-existent. METHODS: About 111 youths with physical disabilities and bothersome pain were interviewed and asked to complete measures of average pain intensity, pain interference, family social support, parent solicitous responding, and catastrophising...
November 12, 2017: Disability and Rehabilitation
https://www.readbyqxmd.com/read/29126359/what-do-parents-of-children-with-autism-expect-from-participation-in-research-a-community-survey-about-early-autism-studies
#9
Sue Fletcher-Watson, Kenneth Larsen, Erica Salomone
Engagement with stakeholders is an essential part of the research process. This is particularly the case for early autism research with infant cohorts and their families, where a range of ethical issues are pertinent. Here, we report on a large survey of parents who have a child on the autism spectrum (n = 1040) which specifically probed attitudes to early autism research. The large majority of parents showed positive attitudes overall, and these were associated with greater access to services, higher service quality ratings and higher rates of intellectual disability among their children...
November 1, 2017: Autism: the International Journal of Research and Practice
https://www.readbyqxmd.com/read/29125509/developing-a-community-based-service-model-listening-to-the-needs-of-all-beneficiaries-and-providers
#10
Katrina Collins
PURPOSE: To inform the strategic and operational development of a community based service model at the Crann Centre, Cork, Ireland for SB children, adults, their families and providers. A needs assessment was conducted by gathering the views of multiple stakeholder perspectives within the SB community in the geographical region the Centre will serve. The intention is to create project deliverables that are responsive to the needs highlighted through this research. METHODS: The study used a multi method design with a participatory research approach to explore the needs of SB individuals, families and providers...
October 20, 2017: Journal of Pediatric Rehabilitation Medicine
https://www.readbyqxmd.com/read/29120314/ethical-challenges-in-fasd-prevention-scientific-uncertainty-stigma-and-respect-for-women-s-autonomy
#11
Natalie Zizzo, Eric Racine
Fetal alcohol spectrum disorder (FASD) is a leading form of neurodevelopmental delay in Canada, affecting an estimated 3000 babies per year. FASD involves a range of disabilities that entail significant costs to affected individuals, families, and society. Exposure to alcohol in utero is a necessary factor for FASD development, and this has led to FASD being described as "completely preventable". However, there are significant ethical challenges associated with FASD prevention. These challenges revolve around 1) what should be communicated about the risks of alcohol consumption during pregnancy, given some ongoing scientific uncertainty about the effects of prenatal alcohol exposure, and 2) how to communicate these risks, given the potential for stigma against women who give birth to children with FASD as well as against children and adults with FASD...
November 9, 2017: Canadian Journal of Public Health. Revue Canadienne de Santé Publique
https://www.readbyqxmd.com/read/29119577/enhancing-human-aspects-of-care-with-young-people-with-muscular-dystrophy-results-from-a-participatory-qualitative-study-with-clinicians
#12
J Setchell, P Thille, T Abrams, L C McAdam, B Mistry, B E Gibson
BACKGROUND: Most research into clinical care of Duchenne or Becker dystrophinopathies (MD) has focused on slowing progressive muscular weakness and extending lifespan. Scarce attention has been paid to the "human" aspects of care such as psychosocial health, living a fulfilling life, or dealing with disability stigma. This study partnered with clinicians to identify and address local and systemic barriers to these human aspects of care. METHODS: We employed a participatory qualitative design at a multidisciplinary MD clinic using 2 methods: (a) ethnographic observations over a 6-month period of clinic visits of children with MD and families, involving 12 clinicians, and (b) 3 "dialogues" (2-way discussions) with these clinicians to collaboratively analyze practices and co-produce recommendations for change...
November 8, 2017: Child: Care, Health and Development
https://www.readbyqxmd.com/read/29112858/sensory-abnormalities-in-children-with-autism-spectrum-disorder
#13
REVIEW
Annio Posar, Paola Visconti
OBJECTIVE: The clinical picture of children with autism spectrum disorder is characterized by deficits of social interaction and communication, as well as by repetitive interests and activities. Sensory abnormalities are a very frequent feature that often go unnoticed due to the communication difficulties of these patients. This narrative review summarizes the main features of sensory abnormalities and the respective implications for the interpretation of several signs and symptoms of autism spectrum disorder, and therefore for its management...
November 4, 2017: Jornal de Pediatria
https://www.readbyqxmd.com/read/29110530/parenting-children-with-down-syndrome-societal-influences
#14
Lourdes Huiracocha, Carlos Almeida, Karina Huiracocha, Jorge Arteaga, Andrea Arteaga, Stuart Blume
Most studies of parenting children with Down syndrome (DS) have been conducted in industrialized countries. They suggest that sensitive communication on the part of professionals, and social support, can lead to acceptance and positive adjustments in the family. This study examined the impact of a diagnosis of DS on Ecuadorian families, in particular at how the diagnosis had been communicated and received, as well as the feelings and experiences which followed. Despite considerable progress in recent years, Ecuador is still marked by discriminatory attitudes which affect children with disabilities and their families, and by the persistence of widespread poverty...
January 1, 2017: Journal of Child Health Care: for Professionals Working with Children in the Hospital and Community
https://www.readbyqxmd.com/read/29108913/development-and-content-validation-of-a-preliminary-core-set-of-patient-and-caregiver-relevant-outcomes-for-inclusion-in-a-potential-composite-endpoint-for-dravet-syndrome
#15
Rima Nabbout, Stephane Auvin, Catherine Chiron, John Irwin, Arun Mistry, Nicola Bonner, Nicola Williamson, Bryan Bennett
BACKGROUND: Dravet Syndrome (DS) is a rare developmental and epileptic encephalopathy characterized by multiple seizures, frequently prolonged and treatment refractory, with significant developmental disabilities and behavioral and psychiatric disorders. Patients with DS require intensive support and supervision from a caregiver, impacting significantly on both patients' and caregivers' lives. This study aimed to identify core concepts to measure the impact on both patients and caregivers in future DS clinical trials...
November 3, 2017: Epilepsy & Behavior: E&B
https://www.readbyqxmd.com/read/29099848/health-impact-and-cost-effectiveness-of-a-domestically-produced-rotavirus-vaccine-in-india-a-model-based-analysis
#16
Johnie Rose, Laura Homa, Sharon B Meropol, Sara M Debanne, Roger Bielefeld, Claudia Hoyen, Mendel E Singer
BACKGROUND: Currently, Indian officials are incorporating a domestically manufactured rotavirus vaccine (based on the 116E rotavirus strain) into the country's universal immunization program; this vaccine will cost significantly less than western rotavirus vaccines. Here, we examine the public health impact, cost, and cost-effectiveness of universal vaccination in India using the 116E vaccine. This work will allow comparison of universal 116E vaccination with other approaches to child mortality reduction, shed light on the future burden of rotavirus disease in India, and help stakeholders understand future resource needs...
2017: PloS One
https://www.readbyqxmd.com/read/29096708/family-resilience-and-adaptive-coping-in-children-with-juvenile-idiopathic-arthritis-protocol-for-a-systematic-review
#17
Sophia Saetes, Lisa Hynes, Brian E McGuire, Line Caes
BACKGROUND: This systematic review is the first step in a study investigating the resilience methods and processes in families of children with juvenile idiopathic arthritis. In particular, this review will focus on chronic or persistent pain, as a common symptom of juvenile idiopathic arthritis, which is the most common rheumatic disease in childhood. The experience of persistent pain can add to the functional disability associated with juvenile idiopathic arthritis. Resilience has relevance to all areas of paediatric psychology, and targeted attention to child, sibling, and parent strengths within the context of paediatric chronic pain and juvenile idiopathic arthritis in particular will augment the field on numerous levels...
November 2, 2017: Systematic Reviews
https://www.readbyqxmd.com/read/29096523/prevalence-and-correlates-of-depressive-symptoms-in-secondary-school-children-in-dhaka-city-bangladesh
#18
Asaduzzaman Khan, Rushdia Ahmed, Nicola W Burton
OBJECTIVES: Depression is a leading contributor to the global burden of disease, and often starts at a young age. Depression in young people can increase the risk of unhealthy lifestyle behaviour and can lead to substantial disability, social problems, poor health, and suicide. Other research has examined depressive symptoms among adult populations in Bangladesh, but little is known about other age groups. The aim of this study was to assess the prevalence and socio-demographic correlates of depressive symptoms among secondary school children of Dhaka city, Bangladesh...
November 2, 2017: Ethnicity & Health
https://www.readbyqxmd.com/read/29074734/the-impact-of-out-of-hospital-models-of-care-on-paediatric-emergency-department-presentations
#19
Russell M Viner, Frances Blackburn, Francesca White, Randy Mannie, Tracy Parr, Sara Nelson, Claire Lemer, Anna Riddell, Mando Watson, Francesca Cleugh, Michelle Heys, Dougal S Hargreaves
OBJECTIVE: To estimate the potential impact of enhanced primary care and new out-of-hospital models (OOHMs) on emergency department (ED) presentations by children and young people (CYP). DESIGN: Observational study. PATIENTS & SETTING: Data collected prospectively on 3020 CYP 0â€"17.9 years from 6 London EDs during 14 days by 25 supernumerary clinicians. CYP with transient acute illness, exacerbation of long-term condition (LTC), complex LTC/disability and injury/trauma were considered manageable within OOHM...
October 26, 2017: Archives of Disease in Childhood
https://www.readbyqxmd.com/read/29073129/receipt-of-selected-preventive-health-services-for-women-and-men-of-reproductive-age-united-states-2011-2013
#20
Karen Pazol, Cheryl L Robbins, Lindsey I Black, Katherine A Ahrens, Kimberly Daniels, Anjani Chandra, Anjel Vahratian, Lorrie E Gavin
PROBLEM/CONDITION: Receipt of key preventive health services among women and men of reproductive age (i.e., 15-44 years) can help them achieve their desired number and spacing of healthy children and improve their overall health. The 2014 publication Providing Quality Family Planning Services: Recommendations of CDC and the U.S. Office of Population Affairs (QFP) establishes standards for providing a core set of preventive services to promote these goals. These services include contraceptive care for persons seeking to prevent or delay pregnancy, pregnancy testing and counseling, basic infertility services for those seeking to achieve pregnancy, sexually transmitted disease (STD) services, and other preconception care and related preventive health services...
October 27, 2017: MMWR. Surveillance Summaries: Morbidity and Mortality Weekly Report. Surveillance Summaries
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