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Children’s At Home: A social media website for peer support during transition for parents of adolescents with chronic conditions

Applicant Akré Christina
Number 171252
Funding scheme Marie Heim-Voegtlin grants
Research institution Policlinique Médicale Universitaire PMU
Institution of higher education University of Lausanne - LA
Main discipline Medico-Social Problems of Youth
Start/End 01.05.2017 - 30.09.2019
Approved amount 208'700.00
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All Disciplines (8)

Discipline
Medico-Social Problems of Youth
Congenital Disorders
Cancer
Respiratory Diseases
Paediatrics
Neurology, Psychiatry
Clinical Endocrinology
Social Paediatrics

Keywords (6)

Parents; Intervention; Peer support; Chronic condition; Adolescence; Transition

Lay Summary (French)

Lead
Grâce aux progrès des traitements médicaux, de nos jours plus de 90% des enfants vivant avec une maladie chronique atteignent l’adolescence. En revanche, une maladie chronique affecte toute la famille et la recherche d’autonomie peut alors s’avérer difficile pour l’enfant autant que pour ses parents étant donné les limites liées à la maladie chronique et ses traitements associés. Alors que des programmes médicaux de transition ont été mis en place pour les adolescents, la transition du point de vue des parents ainsi que les besoins psycho-sociaux durant cette période sont très souvent négligés.
Lay summary

L’objectif principal de ce projet est d’apporter du soutien entre pairs aux parents d’adolescents et jeunes adultes vivant avec une maladie chronique au travers d’une intervention de réseau social intitulée Children’s at home permettant de faciliter le processus psychosocial de transition vers l’autonomie. L’objectif secondaire est de mesurer l’efficacité de l’intervention sur ces parents sur différents aspects tels que l’impact de la maladie chronique sur la famille, le stress et le bien-être. En intervenant auprès des parents, le but est de faciliter le fonctionnement familial global.

L’intervention est destinée aux mères et pères de jeunes âgés entre 12-24 ans vivant avec une maladie chronique. Elle est basée sur une méthodologie qui collecte des données narratives par le biais de vidéos créées par les participants. Ces vidéos sont partagées sur un site de réseau social créé pour l’occasion et qui sert de plateforme d’échanges entre parents. 

Ce projet fait partie d’un effort plus global d’améliorer l’expérience des familles rendues vulnérables durant ces années de transition de l’adolescence du point de vue médical et psychosocial. 

Direct link to Lay Summary Last update: 27.04.2017

Responsible applicant and co-applicants

Employees

Publications

Publication
“We just need to breathe and live normally”: Reconsidering App-based support for parents of adolescents with chronic conditions
AkreChristina, AudersetDiane, Barrense-DiasYara, SurisJoan-Carles, “We just need to breathe and live normally”: Reconsidering App-based support for parents of adolescents with chronic conditions, Journal of adolescent health, USA.

Scientific events

Active participation

Title Type of contribution Title of article or contribution Date Place Persons involved
2019 Excellence in Pediatrics annual conference Poster Evaluating App-based peer-support for parents of adolescents with chronic conditions: What do parents really need? 03.12.2019 Copenhagen, Denmark Akré Christina;
2019 Annual meeting of the Society for adolescent health and medicine (SAHM) Talk given at a conference Why reinvent the wheel? A checklist as a starting point to create a transition program 06.03.2019 Washington DC, United States of America Akré Christina;
Annual Congress of the Swiss Society of Pediatrics Talk given at a conference Une check-list comme point de départ pour une transition réussie? 24.05.2018 Swiss Convention Center, Lausanne, Switzerland Akré Christina;
Children and adolescents with chronic illness. A focus on transition from pediatric to adult care Individual talk Les ‘autres’ transitions vers le monde adulte. Table ronde avec les protagonistes 29.08.2017 Université de Lausanne, Switzerland Akré Christina;
Children and adolescents with chronic illness. A focus on transition from pediatric to adult care Individual talk Les parents dans la transition: quels besoins et quel soutien leur apporter? 29.08.2017 Université de Lausanne, Switzerland Akré Christina;


Self-organised

Title Date Place
Children and adolescents with chronic illness. A focus on transition from pediatric to adult care 29.08.2017 Université de Lausanne, Switzerland

Knowledge transfer events

Active participation

Title Type of contribution Date Place Persons involved
EpiSuisse annual Conference Talk 05.10.2019 Lausanne, Switzerland Akré Christina;


Associated projects

Number Title Start Funding scheme
151749 “What we really need is a chance to share with other parents”: Developing an online platform for parents of chronically ill adolescents 01.08.2014 Doc.Mobility

Abstract

Due to advances in medical treatment, nowadays more than 90% of children with chronic conditions (CC) reach adolescence. Yet CCs involve the whole family and this search for autonomy can be a struggle for the child as much as for the parents given the limits implied by a CC and its associated treatments. At adolescence, CCs involve many struggles and challenges on the medical and psychosocial fronts for the child and parents. For instance, research has shown that caregivers are strongly affected by parenting a child with health problems and parents have expressed needs for support in the different areas of the child’s life. While medical transition programs have been put in place for adolescents, transition from a parent’s perspective as well as the psycho-social needs during this period are often overlooked. Thus a peer-support based intervention could help these families through this process as a way to empower them through role modeling, networking, and information-sharing activities. During my fellowship at Harvard, I developed Children’s At Home for parents, an intervention aiming at supporting parents, and tested its feasibility. Now I wish to implement it in Switzerland. Hence, the primary objective is to bring peer support to parents of adolescents/young adults (AYA) with chronic conditions through an online social media intervention called Children’s At Home (C@H) in order to facilitate the psychosocial process of transition towards autonomy. Secondary objective is to measure the effectiveness of C@H given to parents of AYAs with CCs on outcomes such as impact of the CC on the family, parental stress and well-being. By intervening with parents, the aim is to facilitate the overall family functioning. This study is a pre-post intervention study for mothers and fathers of 12-24 year olds with a CC (using a non-categorical approach towards CCs) measuring the effects of the intervention on different outcomes. Parents will all be assessed with a questionnaire at baseline (T0), 6 months (T1), and 12 months (T2). The intervention, C@H, is based on the fundamentals of the Video Intervention/Prevention Assessment (VIA) methodology that collects data in the form of patient-generated visual narratives, personal “video-diaries” of living with a medical condition. C@H takes VIA a step further by having participants share their visual narratives on a social media website. In this study, parents will use their smartphones to produce visual narratives and use C@H as a platform to share with others about what it means to live with a child with a CC. A secure mobile application will be created for C@H to facilitate parents’ participation. This project is part of a wider endeavor which is to ameliorate vulnerable families’ experience of going through transitional years during adolescence on a medical and psychosocial point of view. By proving its effectiveness, I aim at C@H to stay open and become, in the longer term, an ongoing peer support resource for parents of AYAs with CCs and, given its online feature, spreading it to the rest of Switzerland and the French speaking areas of the Western world.
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