Parent and therapist perspectives on "uptime" activities and participation in Rett syndrome

Abstract

Purpose

People with a disability may spend more time sitting and lying (“downtime”) and less time standing and walking (“uptime”). Caregivers and therapists supporting individuals with Rett syndrome were surveyed, aiming to gather insights on how to support participation in “uptime” activities.

Method

An anonymous online survey including open ended questions about the enablers and barriers to “uptime” was administered to parent/caregivers and therapists/health professionals in an international sample. Responses were coded to the International Classification of Functioning, Health and Disability (ICF) framework identifying barriers, enablers, and strategies for increasing uptime activities.

Results

Parents (N = 115) and therapists (N = 49) completed the survey. Barriers and enablers to “uptime” were identified for all ICF domains and additional data coded to enabling access to the physical environment. Strategies to promote “uptime” activities and participation particularly related to the individual’s physical capacity and personal factors as well as social and physical environmental factors.

Conclusions

Findings can inform the design of interventions aiming to increase “uptime” in individuals with Rett syndrome. Strategies should create individualised support by considering how to build fitness using activities that are motivating, at the same time creating opportunities for social interactions within a range of environments.

IMPLICATIONS FOR REHABILITATION

• “Uptime” participation comprised a dynamic interaction of “doing” the standing or walking activity, with a sense of self-engagement with the activities and interaction with others.

• Strategies to promote “uptime” participation should consider how to create support for person-related attributes, including building physical capacity for a greater volume of “uptime” in activities that are enjoyable and motivating.

• Strategies to promote “uptime participation should also include creating a supportive environment, comprising opportunities for social interaction within a range of environments”.

Keywords:

• Rett syndrome
• physical activity
• sedentary behaviour
• standing
• walking
• participation

Acknowledgements

This work is supported by funding from Rettsyndrome.org, grant number #3607 (https://www.rettsyndrome.org). The authors would like to particularly thank all families, group home caregivers and professionals who participated in this study. We also acknowledge and thank the Rett Syndrome Association of Australia, Rettsyndrome.org, the Rett Syndrome Association Netherlands, and the Danish and Israeli Rett Syndrome Parent Associations, and Rett Syndrome Europe for promoting this study via their networks. The authors also thank Caroline Lietaer for translating the survey into Dutch, Hanneke Borst for translating Dutch responses to English, and to Katherine Stockwell for translating the survey into French and the French responses to English.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This work is supported by funding from Rettsyndrome.org (the International Rett Syndrome Foundation), grant number #3607 (https://www.rettsyndrome.org).