Social Family Activities Engage Rett Patients More Than Daily Routines

Girls and young women with Rett syndrome have a high level of both participation and engagement in social and restful family activities — but are not engaged in morning and evening daily routines — a study finds.

While participation in such daily routines was high, as would be expected, the level of engagement in these activities was found to be “moderate to low,” according to the researchers.

These findings suggest that having Rett patients use their daily routines as a platform for developing or improving different skill sets could be of great benefit for these girls and young women.

“Therapists working with this target group may benefit from focusing on engagement in routine activities in the goal planning process and intervention … giving the opportunity for development of new skills,” the investigators wrote, adding that assistive devices and modification of family activities also may benefit Rett patients.

Having these patients “engage in more family activities and strengthen their role in the family … is important for their identity, [and] psychosocial well-being,” the 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,” was published in the journal Disability and Rehabilitation.

Rett syndrome impacts many aspects of everyday life, including social activities, mental well-being, and physical function — particularly as patients age. Participation and engagement in family activities are an important part of development and quality of life for girls and women living with Rett. 

According to the researchers, family plays a significant role in the ability of girls and young women to socialize, in addition to providing support and care. As such, family-centered interventions are especially beneficial, and understanding how girls and women with Rett engage in activities with their families may help healthcare providers design interventions that better suit patients’ needs.

Here, a team in Denmark investigated participation in family activities among Rett patients younger than 21. Between November 2015 and February 2016, a questionnaire — called Child Participation in Family Activities — was sent to 42 parents of girls and young women with Rett.

The response rate was 59%, with a total of 23 families with daughters between the ages of 3 and 19 participating. All but one of these patients had at least one sibling living at home.

In terms of patient symptoms, 11 of the participants (47.8%) were able to walk for most activities and 11 had some observed hand function, as evaluated at the Danish Center for Rett syndrome. The median Clinical Severity Score was 24.5 on a scale of 58, in which the maximum score indicates the highest disease of severity. 

Social and restful family activities — such as “having breakfast together” — showed high frequency and participation. Overall, those that were more frequent and had a greater level of engagement were in the indoor activities category, including “watching TV” and “joking and fooling around.”

Everyday chores and activities, such as “doing morning routines” and “doing evening routines,” 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, “going for a walk” took place daily or weekly with a high level of participation and engagement.

The researchers noted that outdoor activities “often require considerable help and involvement from the parents, requiring a surplus energy the parents do not have because of the girls’ and young women’s major need of assistance in almost all activities of everyday life.” Such activities, however, were consistently ranked as “a highly enjoyed activity.”

“Thus, it may be relevant for therapists working with these families to focus on assistive devices or other compensatory strategies enabling outdoor activities,” the investigators wrote.

Organized activities, meanwhile, showed low frequency, participation, and engagement, with the exception of “going together to child’s leisure activity.”

Social activities like visiting friends or relatives had a high level of participation and engagement with moderate-to-high frequency. “Going shopping” and “going out in nature” were both frequent outings with high participation and moderate-to-high engagement. For families able to go on vacation, going on a holiday had a high level of participation and engagement.

In 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 engagement in “watching a movie” but not on other activities. 

Increased age had a positive impact on engagement in the family activities of “being together in the kitchen,” “doing evening routines,” and “going shopping.”

Overall, the researchers said the study’s findings helped to high new strategies that may aid therapists, parents, and caregivers in improving patient engagement.

“Focus may be on assistive devices or other compensatory strategies for outdoor activities and activities that require a certain amount of hand function,” the investigators wrote. “This will enable the girls and young women to participate and engage in more family activities and strengthen their role in the family, which is important for their identity, psychosocial well-being, and purpose and structure in everyday life.” 

According to the team, the study may be limited by its descriptive, self-reporting nature, as well as by its small sample size. The length of the questionnaire, and the time commitment for providing answers also may have discouraged some families from participating, the researchers said.