Helping young adults with neurodevelopmental disabilities

(Press-News.org) Contact information: Julie Langelier
julie.langelier@ircm.qc.ca
514-987-5555
Institut de recherches cliniques de Montreal
Helping young adults with neurodevelopmental disabilities IRCM ethics experts study the transition from paediatric to adult health care services Montréal, February 3, 2014 – In a study published today by the medical journal Paediatrics & Child Health, IRCM researchers address shortcomings in transitional care in the Canadian healthcare system. The team led by Eric Racine and Emily Bell, Montréal neuroethics experts, identified important challenges in the transition from paediatric to adult health care, especially among youth with neurodevelopmental disabilities (such as autism spectrum disorders, fetal alcohol spectrum disorders and cerebral palsy).

"Health care transition is a crucial process in the lives of youth with neurodevelopmental disabilities and their parents," explains Dr. Racine, Director of the Neuroethics research unit at the IRCM. "Transition challenges are likely to be greater among these adolescents because of the complexity of their health care needs and the stigma associated with physical and intellectual disabilities that may accompany their disorders. Some individuals believe they were suddenly removed from paediatric care and thrust into a foreign system for which they had not been adequately prepared."

Transition in health care is the process during which adolescents gradually prepare for and shift toward care in the adult system. Several challenges exist in this transition process, including the lack of preparation for the transfer; adult health care providers' lack of experience, training and expertise in traditionally paediatric diseases and conditions; the loss of a longstanding and trusting relationship with the paediatrician; and poor relationships and communication between adolescents and their adult health care physicians.

"We focused on the important issues that arise during transition for youth with neurodevelopmental disabilities," says Dr. Bell, Research Associate in the IRCM's Neuroethics research unit. "From an ethics perspective, a fundamental component of transition is whether individuals with disabilities feel respected, and how their values and autonomy are integrated, developed and supported within the transition."

Several studies have reported problematic attitudes and behaviours by health care providers in their communication and interaction with youth with neurodevelopmental disabilities. These reports suggest that health services and transition programs may respond inadequately to the needs of these individuals.

"Our study confirms that health care providers should play a constructive role in the transition process, and that failure to fulfil this role can cause potentially harmful and frustrating situations," adds Dr. Bell. "Ethics considerations may help transition programs become more responsive to the needs, perspectives and expectations of different stakeholders and lead to the integration of a personalized approach."

A common practice in the transition process is upholding a firm age for transition, in contrast to a developmentally appropriate time for transition. This introduces significant challenges when independence is potentially forced on youth, when the adult system is unable to cope with unprepared patients and when parents are inappropriately left out of shared decision making.

"Developing policies regarding the appropriate time for transition is one example in which ethics challenges could be diminished," concludes Dr. Racine. "We hope our reflection will be useful to both practitioners and scholars, and that further practical policy and scientific developments will bridge existing gaps in the transition process for youth with neurodevelopmental disabilities."

"CIHR is pleased to partner in furthering the work of Drs. Racine and Bell," says Dr. Anthony Phillips, Scientific Director of the CIHR Institute of Neurosciences, Mental Health and Addiction. "Their research will help to ensure access to the continuum of care so important to ensuring significant support for youth living with neurodevelopmental disabilities. It is essential that health care providers consider these findings carefully as they may guide improvements to the transition process from paediatric to adult health care services."

### About the study This study is partly based on a national one-day workshop on the Ethics in Transition in Neurodevelopmental Disorders, held at the IRCM on February 15, 2013. Paediatric and neuroethics experts from across Canada participated in this workshop, which received funding from the IRCM, NeuroDevNet and its Demonstration Projects, and the Sinneave Family Foundation. "Our workshop examined, from an ethics perspective, how we can improve patient experience and services in Canada to facilitate the transition process," says Dr. Racine, event co-organizer. "It is an exciting time for interdisciplinary research because of the increasing recognition that both pediatric and adult healthcare systems need to work together to best serve patients and families,"

Dr. Racine's research was funded by the Canadian Institutes of Health Research and the Fonds de recherche du Québec – Santé. The IRCM research team for this study also included Allison Yan and Veljko Dubljevic, PhD. For more information, please refer to the article published online by Paediatrics & Child Health.

About Eric Racine Eric Racine is Associate IRCM Research Professor and Director of the Neuroethics research unit. He obtained a PhD in applied human sciences (bioethics) from the Université de Montréal. Dr. Racine is Associate Research Professor in the Department of Medicine (accreditation in Social and Preventive Medicine and in Bioethics) at the Université de Montréal. He is also Adjunct Professor in the Department of Medicine (Division of Experimental Medicine) and the Department of Neurology and Neurosurgery at McGill University. Dr. Racine is an affiliate member of the Biomedical Ethics Unit at McGill University. He is a Research Scholar from the Fonds de recherche du Québec – Santé. Dr. Racine's research is designed to improve the ethical aspects of quality of care, research practices and public communications in the domain of clinical and basic neuroscience. For more information, visit http://www.ircm.qc.ca/racine.

About Emily Bell Emily Bell is a Research Associate in the IRCM's Neuroethics research unit, and Adjunct Professor in the Department of Neurology and Neurosurgery at McGill University. She holds an MSc and a PhD in psychiatry from the University of Alberta. She is an investigator within the Neuroethics Core of NeuroDevNet, a Canadian Network of Centres of Excellence. In the past, Dr. Bell has been awarded support from the Social Sciences and Humanities Research Council, the Fonds de la recherche en santé du Québec (now the FRQS), and the Canadian Institutes of Health Research. Some of her current active research areas include investigating the relationship of vulnerability to informed consent in invasive psychiatric research trials, and ethical challenges in research and care for individuals with neurodevelopmental disorders.

About the IRCM Founded in 1967, the Institut de recherches cliniques de Montréal is currently comprised of 35 research units in various fields, namely immunity and viral infections, cardiovascular and metabolic diseases, cancer, neurobiology and development, systems biology and medicinal chemistry. It also houses four specialized research clinics, eight core facilities and three research platforms with state-of-the-art equipment. The IRCM employs 425 people and is an independent institution affiliated with the Université de Montréal. The IRCM Clinic is associated to the Centre hospitalier de l'Université de Montréal (CHUM). The IRCM also maintains a long-standing association with McGill University. The IRCM is funded by the Quebec ministry of Higher Education, Research, Science and Technology.

About CIHR The Canadian Institutes of Health Research (CIHR) is the Government of Canada's health research investment agency. CIHR's mission is to create new scientific knowledge and to enable its translation into improved health, more effective health services and products, and a strengthened health care system for Canadians. Composed of 13 Institutes, CIHR provides leadership and support to more than 12,600 health researchers and trainees across Canada.