Navigation Links
Study to explore ethical challenges health professionals face while caring for children with LTNMDs
Date:1/7/2009

(Baltimore) The Greenwall Foundation recently awarded two core faculty members of the Johns Hopkins Berman Institute of Bioethics a grant that will allow Drs. Gail Geller and Cynda Hylton Rushton to explore the ethical challenges health professionals face while caring for children and families affected by life-threatening neuromuscular diseases (LTNMD).

The concept for this latest LTNMD study grew out of the work of the international HeartSongs Project funded by the Stavros Niarchos Foundation. The goal of the HeartSongs Project is to develop a worldwide network of professionals from a range of disciplines, parents and affected children who share a common vision of comprehensive care for children with LTNMD. In addition to the United States, countries involved in the HeartSongs project include the United Kingdom, Canada, Australia, France, Denmark and Greece. The Project aims to integrate the principles of pediatric palliative care (PPC) into the care of individuals living with LTNMDs. PPC can be described as a holistic, interdisciplinary model of care that incorporates emotional, spiritual, developmental, and physical dimensions. The HeartSongs' International Consortium will develop recommendations regarding promising practices in comprehensive and integrated care. The two-year project, co-directed by Geller and Rushton, opened with a summit in England this past April and will culminate in a second summit to be held in Greece in March 2009. Hopes for a HeartSongs II call for expanding the project to include more European countries as well as countries in South America, Africa, Asia and the Middle East.

The HeartSongs Project is named in honor of the young American poet Mattie J.T. Stepanek who lived with a rare form of muscular dystrophy. Mattie's messages of love, hope and peace have stirred the hearts and souls of millions worldwide. The author of 7 books, Mattie shared hope through his 'Heartsongs' poetry, and collaborated with Former President Jimmy Carter on an essay book, Just Peace. (http://www.mattieonline.com/) Mattie died in 2004 just before his fourteenth birthday. According to Dr. Rushton, "Mattie's legacy for a better world for all children has inspired our work to improve the lives of children, like Mattie, who live with LTNMDs."

Geller and Rushton's earlier research, also funded by the Stavros Niarchos Foundation, revealed that many parents of children living with LTNMD often do not take advantage of Advanced Care Planning (ACP) as early as experts recommend. "Because the life expectancy of LTNMDs is uncertain and unpredictable," Drs. Geller and Rushton claim that "ACP, and palliative care more broadly, should not be restricted solely to children who are considered close to death."

Geller and Rushton's newest Greenwall Foundation funded study will focus on the attitudes and behaviors of health professionals who care for patients living with Duchnne Muscular Dystrophy (DMD) and Spinal Muscular Atrophy (SMA Type 1), the two most common pediatric LTNMDs worldwide. "Although both diseases are life threatening," says Dr. Geller, "each has a unique life expectancy and disease trajectory thereby creating distinct ethical challenges for the children, their families and the health care team." Dr. Rushton says, "based on a review of the literature and our own prior work, there is a need to more fully understand the nature, prevalence, and consequences of ethical challenges experienced by Neuromuscular Disease specialists who care for these children, adolescents and their families." These findings will fill an important gap that will inform the development of targeted interventions to support patient/family centered care of children with LTNMD's and their families.

Rushton and Geller say results of the national survey of health care practitioners will be presented to a focus group of regional Muscular Dystrophy Association-clinic directors and pediatric palliative care specialists to develop clinical and policy recommendations for enhancing ethically appropriate care for children with LTNMD.


'/>"/>

Contact: Ralph Loglisci
RalphL@jhu.edu
410-294-9071
Johns Hopkins Berman Institute of Bioethics
Source:Eurekalert

Related medicine news :

1. Penn study finds pro-death proteins required to regulate healthy immune function
2. New study shows promise in reducing surgical risks associated with surgical bleeding
3. Study, meta-analysis examine factors associated with death from heatstroke
4. Study suggests loss of 2 types of neurons -- not just 1 -- triggers Parkinsons symptoms
5. Study says COPD testing is not measuring up
6. Preclinical study suggests organ-transplant drug may aid in lupus fight
7. Ability to cope with stress can increase good cholesterol in older white men, study finds
8. High alcohol consumption increases stroke risk, Tulane study says
9. Mailman School of Public Health study examines link between racial discrimination and substance use
10. Pitt study finds inequality in tobacco advertising
11. Stanford study highlights cost-effective method of lowering heart disease risks
Post Your Comments:
*Name:
*Comment:
*Email:
(Date:1/20/2017)... ... 20, 2017 , ... ATP Science, an Australian-based company focused ... the January ECRM Trade Show in Hilton Head, SC, benefiting from outstanding meetings ... of supplements that keep the body functioning at its peak performance by providing ...
(Date:1/20/2017)... ... January 20, 2017 , ... "TransFlare 4K Mystique comes with 44 colorful ... Pro X," said Christina Austin - CEO of Pixel Film Studios. , TransFlare ... Sensor,TransFlare 4K Mystique lens flare and light leak transitions have a very high-dynamic range ...
(Date:1/20/2017)... , ... January 20, 2017 , ... “The Angel”: ... Lord has set out for each of his children. “The Angel” is the creation ... of Music in New York City, and impassioned writer. , When asked of her ...
(Date:1/20/2017)... ... January 20, 2017 , ... D R Burton Healthcare ... device, was featured in a study indicating superior performance against competitive products in ... of Three Oscillating Positive Expiratory Pressure Devices During Simulated Breathing“ was published in ...
(Date:1/20/2017)... ... ... “Knowledge is God’s Lighthouse”: a moving and colorful collection of prayers that reminds ... published author, Gene Gaapf, a retired truck driver, and a long-time writer, whose published ... high school and have many different titles,” Gaapf mentions about his different works. “I ...
Breaking Medicine News(10 mins):
(Date:1/21/2017)... 2017 Research and Markets has announced the ... - Technology, Route Of Administration, End User - Forecast to 2025" ... ... grow at a CAGR of around 7.8% over the next decade ... industry report analyzes the global markets for Advanced Drug Delivery across ...
(Date:1/20/2017)... YORK , January 20, 2017 ... Inc. (NASDAQ: SGYP ), Novo Nordisk A/S (NYSE: ... SCMP ), and Pernix Therapeutics Holdings Inc. (NASDAQ: ... fell on Thursday, January 19 th , 2017, finishing near ... Health Care Index dropped over 0.7%, while shares of health ...
(Date:1/20/2017)... Avillion LLP, a co-developer and financier of late-stage pharmaceutical product candidates, ... Chief Medical Officer. Dr Weinberg will be based in ... ... 17 years as a pharmaceutical and biotech executive with experience ranging ... of his career, he has interfaced with the US Food & ...
Breaking Medicine Technology: