Basic Needs Take Up Large Chunks of Time in Daily Life of Teens and Young Adults with Rett Sydrome, Study Finds

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by Jonathan Grinstein |

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Meeting basic daily tasks, from getting dressed to assuring good hygiene and medical care, are so time-consuming for teenagers and young adults with Rett syndrome that time for more social and interactive activities is scarce, a study based on diaries kept by family members and caregivers found.

Its researchers propose that planning for periods spent interacting with others or the outdoors could reduce the risk of these adolescents growing into a more isolated, sedentary adulthood.

The article, “Rett syndrome: Teenagers’ and young adults’ activities, usage of time and responses during an ordinary week – a diary study,” was published in the Scandinavian Journal of Occupational Therapy.

People with Rett syndrome have severe neurological and behavioral disabilities, and depend on assistance and support to participate in many life activities. This presents unique challenges to them, their families, and those involved in their treatment.

How these challenges affect how time is spent throughout the day is unclear. Understanding how young people with Rett syndrome and their families spend their time, and the emotional responses linked to them, can help better manage treatment plans.

Researchers at Linköping University in Sweden wanted to gain insight into the daily life and activities undertaken by teens with Rett syndrome.

“This study was inspired by the encounter with individuals with Rett syndrome and their families and staff and has an occupational perspective, meaning that it focuses on the environment in question, the activities that people do, and the significance they attach to what they are doing,” researchers wrote.

They studied how four teenagers and six young women with Rett spent their time during a typical day. All were non-verbal, using “alternative communication, such as individual expression of body movements, vocalizations, eye gaze and facial expressions,” the study noted. Only one was able to feed herself, and two were fed using gastrostomy tubes.

The team recruited 63 family and caregivers (10 mothers, nine fathers and 44 support staff) to keep a diary detailing the everyday life activities of the 10 Swedish patients. Each diary focused on time, locations, people, and activity duration to understand how these teenagers spent their days.

Regardless of the weekday, a large part of the adolescents’ time was taken up with basic needs such as sleep, daily care, and medical/health care activities. While meeting these needs are essential, little time remained for engaging in more social interaction.

Rett itself was seen as a likely reason for extended periods of time each day being spent on basic care.

“All participants needed care and support in all/most activities, both at night and in the daytime irrespective of age, mobility or type of housing,” the researchers wrote. “In the diaries of six of the participants, there were descriptions of breathing disturbances and in four diaries there were notes regarding seizures.”
Mean daily time spent on the following activities by all patient was:
  • Sleep – 9 hours 30 minutes
  • Daily care – 6 hours 15 minutes
  • Medical health care – 1 hour 35 min

In comparison, the mean time spent each day on social and creative activities was 41 minutes, communication was 40 minutes, and school or other daily work was 29 minutes.

In total each day, this young people spent 15 hours and 45 minutes either sleeping or engaging in daily care (eating, hygiene, dressing, etc.) and medical care (medication, assistance with braces and orthoses, tactile massage, etc.). A similar study in Swedish women, ages 15 to 24, without Rett syndrome showed they spent a total of around 11 hours per day on sleep and daily care activities, nearly five hours less than the 10 patients.

“The participants’ daily condition and need for care, support, and assistive technology devices, such as routines for standing up and walking, may set the day’s activity agenda,” the researchers wrote.

Time spent in inactivity should be limited, they added, and there is a need for increased physical activities in younger Rett patients. Teenagers and young adults with Rett syndrome who fail to engage regularly in stimulating activities will likely spend less time engaged with others when they reach adulthood.

“Sedentary time must be reduced, with more time spent outdoors, and for the teenagers or young adults, more time should be given to the activities they appreciated and engaged in,” the researchers wrote. “Further research is needed concerning Rett syndrome and everyday life, quality of life and rehabilitative interventions and use of activities,” they concluded.