scholarly journals Perceived quality of life among caregivers of children with a childhood-onset dystrophinopathy: a double ABCX model of caregiver stressors and perceived resources

2017 ◽  
Vol 15 (1) ◽  
Author(s):  
Natalia Frishman ◽  
Kristin Caspers Conway ◽  
Jennifer Andrews ◽  
Jacob Oleson ◽  
Katherine Mathews ◽  
...  
Author(s):  
Peggy Henninger ◽  
Donna M. L. Heretick

Previous research supports application of the Double ABCX model of family adaptation of parents of children with autism spectrum disorder and other pervasive developmental disorders. This is the first study to consider processes of adaptation among parents of children with agenesis of the corpus callosum (ACC). Using a quantitative cross-sectional design, an international sample of 266 mothers of children, aged 12 or under, with ACC completed an online survey. Parental reports of stress, resources, coping, and sense of coherence were evaluated as predictors of four subdimensions of parental quality of life for 178 mothers. In general, findings support the Double ABCX model as a viable approach to understanding processes that are related to quality of life among this group of mothers.


BMJ Open ◽  
2018 ◽  
Vol 8 (7) ◽  
pp. e021346 ◽  
Author(s):  
Anna Alonso-Solís ◽  
Katya Rubinstein ◽  
Iluminada Corripio ◽  
Erika Jaaskelainen ◽  
Annika Seppälä ◽  
...  

IntroductionTreatment-resistant schizophrenia (TRS) is a severe form of schizophrenia. In the European Union, approximately 40% of people with schizophrenia have TRS. Factors such as the persistence of positive symptoms or higher risk of comorbidities leave clinicians with a complex scenario when treating these patients. Intervention strategies based on mHealth have demonstrated their ability to support and promote self-management-based strategies. Mobile therapeutic attention for treatment-resistant schizophrenia(m-RESIST), an innovative mHealth solution based on novel technology and offering high modular and flexible functioning, has been developed specifically for patients with TRS and their caregivers. As intervention in TRS is a challenge, it is necessary to perform a feasibility study before the cost-effectiveness testing stage.Methods and analysisThis manuscript describes the protocol for a prospective multicentre feasibility study in 45 patients with TRS and their caregivers who will be attended in the public health system of three localities: Hospital Santa Creu Sant Pau (Spain), Semmelweis University (Hungary) and Gertner Institute & Sheba Medical Center (Israel). The primary aim is to investigate the feasibility and acceptability of the m-RESIST solution, configured by three mHealth tools: an app, wearable and a web-based platform. The solution collects data about acceptability, usability and satisfaction, together with preliminary data on perceived quality of life, symptoms and economic variables. The secondary aim is to collect preliminary data on perceived quality of life, symptoms and economic variables.Ethics and disseminationThis study protocol, funded by the Horizon 2020 Programme of the European Union, has the approval of the ethics committees of the participating institutions. Participants will be fully informed of the purpose and procedures of the study, and signed inform consents will be obtained. The results will be published in peer-reviewed journals and presented in scientific conferences to ensure widespread dissemination.Trial registration numberNCT03064776; Pre-results.


PLoS ONE ◽  
2017 ◽  
Vol 12 (12) ◽  
pp. e0188499 ◽  
Author(s):  
Alexandra A. N’Goran ◽  
Anouk Déruaz-Luyet ◽  
Dagmar M. Haller ◽  
Andreas Zeller ◽  
Thomas Rosemann ◽  
...  

2009 ◽  
Vol 24 (6) ◽  
pp. 585-594 ◽  
Author(s):  
Josep Lluís Conde-Sala ◽  
Josep Garre-Olmo ◽  
Oriol Turró-Garriga ◽  
Secundino López-Pousa ◽  
Joan Vilalta-Franch

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