Growth curve modeling of virtual events and online engagement in a palliative care peer support online health community for adolescents and young adults
Adolescence; Engagement; Online; Palliative Care; Peer Support; Virtual Events
Online health communities (OHCs) have been identified as important outlets for social support and community connection for adolescents and young adults (AYAs) living with chronic illnesses. Despite evident benefits, there remains a gap in research on methods to maximize sustained patient engagement within OHCs. This study assessed per-patient daily commenting rates over time, as well as associations with program staff and volunteer-facilitated events and engagement.We utilized data from 662 daily patient, volunteer, and staff comment totals within a Discord server hosted through the Streetlight at UF Health Streetlight Gaming and Online Team, between January 2019 and January 2022. Multilevel models were used to assess per-patient daily commenting rates and examine associations with OHC-level predictors of staff and volunteer-facilitated daily and seasonal events, as well as the number of daily active users.Per-patient comment rates showed an overall negative slope with time in most models. Unadjusted and adjusted growth curve models showed that daily events (β = .21), seasonal events (β = .18), and total daily active users (β = .09) were all significantly associated with increases in per-patient daily comment rates.Results suggest that social event facilitation strategies can be applied to increase AYA patient engagement in OHCs. Seasonal events and staff and volunteer engagement may be the effective means of maintaining engagement among long-term patients.Our findings highlight the importance of staff and volunteer presence in OHCs in driving long-term patient engagement and in considering patient needs and perspectives in developing OHC features.
Walker AL; Swygert A; Marchi E; Lebeau K; Haardörfer R; Livingston III MD
Journal of the American Medical Informatics Association
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1093/jamia/ocac252" target="_blank" rel="noreferrer noopener">10.1093/jamia/ocac252</a>
Guided eating or feeding: three girls with Rett syndrome
children; Rehabilitation; occupational therapy; skills; Activity; dyspraxia; engagement; hand function; hand splints; hand use; involvement; movements; participation; stereotyped hand movements; tone and motor problems; Rett syndrome; psychological intervention; guided eating; being fed
Rett syndrome (RTT) considerably limits participation in daily activities but food and mealtimes are most often motivating activities for persons with RTT. The aim of this study was to investigate whether there is a difference in participation during meals when the persons eating do so through guided eating compared with being fed. Three girls with classic RTT participated in a study inspired by single-subject design. Investigation was performed during two meals at which the girls were fed and during a seven- to eight-week period when guided eating took place. Video analysis and registration forms were used, investigating (1) coordination between opening of the mouth and spoon movement, (2) signs of involvement during the meal, and (3) cooperation in arm movements during guided eating. Guided eating led to improved coordination between opening of the mouth and spoon movement, resulting in opening of the mouth before the spoon arrived, for all of the girls. Signs of involvement changed in two of the girls. According to the guiders, they were able to feel cooperation in arm movements during the different food intake sequences in all three girls. These results indicate that guided eating improved involvement and participation in the eating process in these girls.
Qvarfordt I; Engerstrom I W; Eliasson A C
Scandinavian Journal of Occupational Therapy
2009
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1080/11038120802326214" target="_blank" rel="noreferrer noopener">10.1080/11038120802326214</a>