Better Communication Needed to Help Fragile X Patients Transition Into Adulthood, Study Suggests

Better Communication Needed to Help Fragile X Patients Transition Into Adulthood, Study Suggests
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Better communication among different institutions is needed to assist young patients with fragile X syndrome make the transition from school into adult life, according to a small study.

Support programs for youth with fragile X lack continuity and complementarity, the results indicated.

The study, “Factors Impacting the Transition to Adulthood of Youth With Fragile X Syndrome and Their Families: Facilitators, Obstacles and Needs,” was published in the journal Research in Developmental Disabilities and was conducted by researchers at University of Sherbrooke, in Canada.

Fragile X is the most common genetic cause of autism and intellectual disability. Because the condition does not affect life expectancy, patients require care throughout all stages of life. The transition into adulthood is a particularly critical stage for any child, especially those with a neurodevelopmental disorder.

Few studies have assessed the experiences of parents of children with fragile X, despite the crucial role they play in this complex period.

In Québec, where the study took place, planning for this transition is strongly encouraged, but no provincial policy, law, or regulation exists to ensure uniformity in social services, which complicates transition planning and management.

To better understand factors affecting such transitions, the team interviewed 13 parents of 17 young people with fragile X, ages 18 to 26.

The first question was open-ended, allowing parents to provide as much information as possible. Each interview began with: Tell me about your child, his/her interests, strengths and difficulties.This approach was meant to get an overall picture of the young adult in everyday life, eliciting information regarding their autonomy, productivity, and leisure activities.

Further questions were more targeted to specific aspects of the school-to-adult-life transition. Examples include: “In your opinion, what helped you/did not help you to prepare for the end of school?” and In a few years, your child will be leaving school. How are you anticipating that change?

Based on parents’ responses, factors that affected the success or failure of planning for their child’s transition fell into two general categories: factors relating to individual families and those relating to institutions involved in the process.

The first category involved factors such as severity of intellectual disability, relative autonomy — which affected parents’ ability to work full time — presence of autistic traits (which affect the ability to integrate into a new environment), and the number of other children in the family with fragile X.

Three families had two or more members with fragile X. Parents reported that having other family members with this disorder gave them valuable knowledge to help manage a child’s transition into adult life.

Two other factors that also helped were the degree to which parents were entrepreneurial, as having a family business made entry into the workforce easier for one child, and how proactive the parents were in seeking help for their children.

“If you don’t ask for anything,” responded one parent, “they don’t give you anything.”

In the institutional category, parents described lack of a systematic transition process, as services had differences in start times and information given to parents.

One significant obstacle was a reported shortage in adult placement institutions. Seven of the youths in the survey spent months awaiting job and work experience placements, and openings in adult education and daily activities centers. This resulted in fragmented activity schedules involving part-time work and in some cases, considerable amounts of time spent at home causing stress among parents.

On the bright side, some centers did organize recreational activities and work experience programs that enabled a more gradual integration into the post-school setting.

Finally, the degree to which parents collaborated with the institutions, as well as their perception of those professionals’ competence, played significant roles in parents’ experiences of this process. Two parents, for example, worked in the same environment as the professionals involved in their children’s cases.

“When reading the interview transcripts, an important fact emerges, namely that there is a desperate shortage of resources, which restricts the inclusion and social participation of young adults with disabilities,” the scientists wrote. “Their social interaction difficulties are often a source of anxiety for the youths and hence a limitation on their integration in new environments.”

“One reality common to all the parents’ accounts is the light shed on the serious lack of efficiency, continuity, dialogue, communication and complementarity between institutions involved in the transition between the end of school and the resources in adulthood,” they added.

Forest Ray received his PhD in systems biology from Columbia University, where he developed tools to match drug side effects to other diseases. He has since worked as a journalist and science writer, covering topics from rare diseases to the intersection between environmental science and social justice. He currently lives in Long Beach, California.
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José is a science news writer with a PhD in Neuroscience from Universidade of Porto, in Portugal. He has also studied Biochemistry at Universidade do Porto and was a postdoctoral associate at Weill Cornell Medicine, in New York, and at The University of Western Ontario in London, Ontario, Canada. His work has ranged from the association of central cardiovascular and pain control to the neurobiological basis of hypertension, and the molecular pathways driving Alzheimer’s disease.
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Forest Ray received his PhD in systems biology from Columbia University, where he developed tools to match drug side effects to other diseases. He has since worked as a journalist and science writer, covering topics from rare diseases to the intersection between environmental science and social justice. He currently lives in Long Beach, California.
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