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Articles 31 - 36 of 36

Full-Text Articles in Congenital, Hereditary, and Neonatal Diseases and Abnormalities

Alternative Interventions For Children Coping With Chronic Conditions: A Critical Review Of The Literature, Nina M. Pelsi, Kim S. Amer Jul 2017

Alternative Interventions For Children Coping With Chronic Conditions: A Critical Review Of The Literature, Nina M. Pelsi, Kim S. Amer

DePaul Discoveries

Reduction of stressors and anxiety levels in adolescents with chronic illnesses is a critical concept in pediatric health care in America today. The many stressors associated with chronic illness include displaying physical and mental differences, social stigma, financial difficulty, and family stress. These stressors may affect the adolescent’s ability to learn and cope in everyday life. The current research was a critical review of the literature examining studies done with adolescents coping with chronic diseases and illnesses. The aim was to analyze the most efficacious non-pharmacological methods for reducing stressors in adolescents with chronic illness. A critical review of the …


Losing Ground: Awareness Of Congenital Cytomegalovirus In The United States, Sara M. Doutre, Tyson S. Barrett, Janelle Greenlee, Karl R. White Nov 2016

Losing Ground: Awareness Of Congenital Cytomegalovirus In The United States, Sara M. Doutre, Tyson S. Barrett, Janelle Greenlee, Karl R. White

Journal of Early Hearing Detection and Intervention

One in 150 infants is born with cytomegalovirus (CMV) and one in 750 will have lifelong disabilities due to CMV. Even though congenital CMV is the leading viral cause of congenital disabilities and the leading non-genetic cause of childhood hearing loss, most adults have never heard of it. Data from the 2015 and 2016 HealthStylesTM surveys were analyzed and compared to data from similar studies and show an awareness rate of 7% for US adults (5% for men and 9% for women), a statistically significant decrease from 2005 and 2010 studies. Predictors of awareness include gender and education level. …


Hdqlife: Development And Assessment Of Health-Related Quality Of Life In Huntington Disease (Hd), N E Carlozzi, S G Schilling, J-S Lai, J S Paulsen, E A Hahn, J S Perlmutter, C A Ross, N R Downing, A L Kratz, M K Mccormack, M A Nance, K A Quaid, J C Stout, R C Gershon, R E Ready, J A Miner, S K Barton, S L Perlman, S M Rao, S Frank, I Shoulson, H Marin, M D Geschwind, P Dayalu, S M Goodnight, D Cella Oct 2016

Hdqlife: Development And Assessment Of Health-Related Quality Of Life In Huntington Disease (Hd), N E Carlozzi, S G Schilling, J-S Lai, J S Paulsen, E A Hahn, J S Perlmutter, C A Ross, N R Downing, A L Kratz, M K Mccormack, M A Nance, K A Quaid, J C Stout, R C Gershon, R E Ready, J A Miner, S K Barton, S L Perlman, S M Rao, S Frank, I Shoulson, H Marin, M D Geschwind, P Dayalu, S M Goodnight, D Cella

Rowan-Virtua School of Osteopathic Medicine Departmental Research

PURPOSE: Huntington disease (HD) is a chronic, debilitating genetic disease that affects physical, emotional, cognitive, and social health. Existing patient-reported outcomes (PROs) of health-related quality of life (HRQOL) used in HD are neither comprehensive, nor do they adequately account for clinically meaningful changes in function. While new PROs examining HRQOL (i.e., Neuro-QoL-Quality of Life in Neurological Disorders and PROMIS-Patient-Reported Outcomes Measurement Information System) offer solutions to many of these shortcomings, they do not include HD-specific content, nor have they been validated in HD. HDQLIFE addresses this by validating 12 PROMIS/Neuro-QoL domains in individuals with HD and by using established PROMIS …


Frequency Of Birth Defects And Its Relationship To Parents Having Interfamily Marriages At A Tertiary Care Hospital, Tufail Soomro, Shiyam Sunder Tikmani Jan 2016

Frequency Of Birth Defects And Its Relationship To Parents Having Interfamily Marriages At A Tertiary Care Hospital, Tufail Soomro, Shiyam Sunder Tikmani

Community Health Sciences

Background: Inter family cousin marriages carries a risk of increased birth defects. The exact contribution of interfamily to birth defects risk is controversial. The aims of this study were to determine the frequency of birth defects in in relation to interfamily or outside family marriages.
Methods: This cross sectional study was conducted in the Civil hospital Sukkur from 9th November 2013 to 13th December 2015. Mothers giving birth to babies married in interfamily or outside family with their consent obtained were included in the study. Mothers not giving consent for study and having any known major illnesses were excluded from …


Supporting Families With Congenital Adrenal Hyperplasia: Encouraging Whole Family Health, Kathryn A. Kraft Jan 2014

Supporting Families With Congenital Adrenal Hyperplasia: Encouraging Whole Family Health, Kathryn A. Kraft

Antioch University Dissertations & Theses

In this dissertation, I discuss the medical and psychological needs of families with children with Congenital Adrenal Hyperplasia (CAH). Due to these needs, I have designed and described a program of social support and psychoeducation to be offered to parents and families. Specifically, I discuss the difficulty that parents have when finding out that their child has CAH, the emotional toll this takes on a parent, on their relationship, and on their family. Using a Family Systems Illness Model, I designed a program that takes into account family functioning, organization, structure, and communication when determining what would be most helpful …


A Study Of Families With Stress Related To The Care Of Children With Myelomeningocele, Janet L. Ferguson, Russel Tweed Jan 1971

A Study Of Families With Stress Related To The Care Of Children With Myelomeningocele, Janet L. Ferguson, Russel Tweed

Dissertations and Theses

This was an exploratory-descriptive study of fifty children afflicted with myelomeningocele, ages one through six, who were known to the Myelomeningocele Clinic of the Crippled Children’s Division. The study identified the degree of multiple physical, emotional, and environmental stress factors that families must be prepared to cope with. The study identified eleven factors felt to play an important role in family dynamics and how they related to the families response to their child with myelomeningocele. The factors were tested and found to be valid by the use of a pre-test on ten case records. Medical records were then obtained from …