Girls and young women with rett syndrome have a high level of participation and engagement in social and restful family activities – but are not engaged in daily morning and evening routines – according to one study.
While participation in such daily routines was high, as might be expected, the level of engagement in these activities was rated as “moderate to low, âaccording to the researchers.
These results suggest that having Rett’s patients use their daily routines as a platform to develop or improve different skill sets could be of great benefit to these girls and young women.
“Therapists working with this target group may benefit from the focus on engaging in routine activities in the process of goal planning and intervention … giving the opportunity to develop new skills,” the investigators wrote, adding than assistive devices and changing family activities may also benefit Rett patients.
Getting these patients to âengage in more family activities and strengthen their role in the familyâ¦ is important for their identity, [and] psychosocial well-being, âthe researchers wrote.
Their study, “Participation and engagement in family activities among girls and young women with Rett syndrome living at home with their parents – a cross-sectional study, âWas published in the journal Disability and rehabilitation.
Rett syndrome impacts many aspects of daily life, including social activities, mental well-being, and physical function, especially as patients age. Participation and engagement in family activities is an important part of the development and quality of life of the girls and women living with Rett.
According to the researchers, the family plays an important role in the ability of girls and young women to socialize, in addition to providing support and care. As such, family-centered interventions are particularly beneficial, and understanding how girls and women with Rett’s engage in activities with their families can help health care providers design interventions that better respond. patient needs.
Here, a team in Denmark investigated participation in family activities in Rett patients under the age of 21. Between November 2015 and February 2016, a questionnaire – called Children’s Participation in Family Activities – was sent to 42 parents of girls and young women with Rett’s.
The response rate was 59%, with a total of 23 families with daughters aged 3 to 19 participating. All of these patients except one had at least one brother or sister living at home.
In terms of patient symptoms, 11 of the participants (47.8%) were able to walk for most activities and 11 had observed hand function, as assessed at the Danish Center for Rett Syndrome. The median clinical severity score was 24.5 on a scale of 58, where the maximum score indicates the most serious disease.
Social and relaxing family activities – such as ‘having breakfast together’ – showed high frequency and participation. Overall, those that were more frequent and had a greater the level of engagement was in the category of indoor activities including âwatching TVâ and âjoking and having funâ.
Daily tasks and activities, such as âdoing morning routinesâ and âdoing evening routinesâ, were frequent and had a very high level of participation. However, these activities had low to moderate engagement.
Outdoor activities had a high level of engagement but were less frequent, with lower participation. For example, âtaking a walkâ took place daily or weekly with a high level of participation and commitment.
The researchers noted that outdoor activities “often require considerable parental help and involvement, requiring extra energy that parents do not have due to the overwhelming need for assistance from girls and children. young women in almost all activities of daily living “. These activities, however, have always been classified as “a much appreciated activity”.
âThus, it may be relevant for therapists working with these families to focus on assistive devices or other compensatory strategies that allow outdoor activities,â the investigators wrote.
The organized activities, on the other hand, showed low frequency, participation and commitment, with the exception of “go together at the leisure of the child.”
Social activities such as visiting friends or relatives had a high level of participation and engagement with moderate to high frequency. âShoppingâ and âgoing out into natureâ were both frequent outings with high turnout and moderate to high engagement. For families able to go on vacation, going on vacation has a high level of participation and commitment.
By evaluating how family dynamics and patient characteristics affect family activities, the researchers found that having a higher number of siblings had a significantly negative impact on commitment to ‘watch a movie’, but not on other activities.
The increase in age had a positive impact on engagement in family activities such as âbeing together in the kitchenâ, âdoing evening routinesâ and âshoppingâ.
Overall, the researchers said the study results had helped develop new strategies that could help therapists, parents and caregivers improve patient engagement.
âThe focus may be on assistive devices or other compensatory strategies for outdoor activities and activities that require a certain hand function,â the investigators wrote. “This will allow girls and young women to participate and engage in more family activities and strengthen their role within the family, which is important for their identity, their psychosocial well-being, as well as their purpose and their structure in everyday life.
According to the team, the study may be limited by its descriptive and self-reported nature, as well as its small sample size. The length of the questionnaire and the time spent providing answers may also have discouraged some families from participating, the researchers said.