Emotional Burden and Coping Strategies of Parents of Children with Rare Diseases

Picci, Rocco Luigi; Oliva, Francesco; Trivelli, Federica; Carezana, Claudio; Zuffranieri, Marco; Ostacoli, Luca; Furlan, Pier Maria; Lala, Roberto

doi:10.1007/s10826-013-9864-5

Cited by 46 publications

(65 citation statements)

References 31 publications

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“…This result may be due to that parent's reported feeling exhausted and stressed in regard to the huge responsibilities associated with caring of a child with disability. This result came to be consistent with finding from earlier studies such as (Picci, et al, 2015;& Woodman, & Hauser, 2013;Wang, Michaels, & Day, 2011) which all pointed out high levels of stress in parents of children with autism. According to the literature reviewed before, these high levels of stress came as a result of permanent feelings of crisis of parents' inadequacy to provide effective care to handle developmental and behavioral problems in their child with disability and feelings of segregation and refusal they might face from their societies (Mount & Dillon, 2014).…”

Section: Discussionsupporting

confidence: 92%

“…In this view, (Woodman, & Hauser, 2013) indicate to coping strategies as constant change in cognitive and behavioral act by person to manage the growing external and/or internal needs of caring the child with disability. As stated in (Picci, et al, 2015), parents of children with disabilities contribute to use different strategies to cope with stress such as, looking for support, avoidance strategies, self-blame, drug abuse, making jokes, rebuilding of stressful situation in positive manner.…”

Section: Introductionmentioning

confidence: 99%

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Stress and Coping Strategies Among Parents of Children With Autism Spectrum Disorder

Mona

2019

pijss

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Having a child with autism is a major event that negatively affects families, and force families to re-evaluate its plans, goals, and relationships in light of restrictions and limitations associated with child's disability, and resultant stresses in parents and their efficiency in coping with these stresses. This study aimed to assess stress and coping strategies among parents of children with autistic disorder. A purposive sample of thirty Parents of Autistic Children was recruited from the Center for Social and Preventive Medicine (child psychiatry out-patient clinic) in Abou-El-Rish University Hospital. Three tools were used to conduct the current study, demographic and medical data sheet, parent stress scale and coping strategies scale. The results indicated that, sixty percent of the studied parents had moderate level of stress. The results also showed that, more than fifty percent were using seeking information, avoidance and denial coping strategies.And finally, the results indicated high positive and significant correlation and acceptable predictable relation between levels of stress and coping strategies. In conclusion, children with autism require lifelong provision, management and service coordination.

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Section: Discussionsupporting

confidence: 92%

Section: Introductionmentioning

confidence: 99%

Stress and Coping Strategies Among Parents of Children With Autism Spectrum Disorder

Mona

2019

pijss

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“…Indisputably, there are many causes of hypothonia, although hypotonia and a poor sucking reflex are indicative signs of PWS (Cassidy and Driscoll 2009;Chaij et al 2014;Paschos, Bass and Strydom 2014). The diagnosis of a rare disease is less definite (Picci et al 2015), but 99% of PWS cases can be diagnosed with a simple molecular test, DNA methylation (Cassidy and Driscoll 2009). The participants in this study did not receive any information about growth hormone treatment which improves growth, physical phenotype and body composition in children with PWS (Cassidy and Driscoll 2009;Mazaheri et al 2013).…”

Section: Discussionmentioning

confidence: 98%

“…They need well-equipped and highly knowledgeable professionals (McGravey and Hart 2008;Allen 2011;James 2013), and action-oriented and abilityrelated information about life expectancy, care and the consequences of rare disease (van den Borne et al 1999;McGravey and Hart 2008;Cassidy and Driscoll 2009;Huyard 2009, Dimitropoulos et al 2013James 2013;Mazaheri et al 2013;Chaij et al 2014). Picci et al (2015) conducted a study that highlights the importance of training and information-providing of physicians for parents of children with rare diseases. The results from this study show that participants did not receive, in the most cases, that kind of support during the early years of their children.…”

Section: Discussionmentioning

confidence: 99%

Being a Mother of a Child with Prader-Willi Syndrome: Experiences of Accessing and Using Formal Support in Croatia

Buljevac

Leutar

2018

Scandinavian Journal of Disability Research

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The aim of this qualitative study is to obtain insight into the experiences of mothers of children with PWS with the formal support system in Croatia. The study was conducted in 2013 with five mothers of children with PWS. Thematic analysis was used as the analytic method. The results highlight four major themes related to mothers' experience of accessing and using formal support: professionals' lack of knowledge about PWS results in living without support; professionals' lack of empathy; professionals' commitment to improve the well-being of families; and getting support through membership in the Association of Persons with PWS Croatia. The social support in Croatia is defined by the lack of knowledge and lack of empathy of professionals, which results in disrespect for the human rights and dignity of children with PWS. Raising the awareness about PWS is crucial for improving the quality of life of families living with PWS.

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“…Por último, cabe destacar la diferencia que existe entre ER y enfermedades crónicas. Aunque ambas pueden ser de origen genético, tener un curso crónico y degenerativo, con consecuencias negativas a nivel socioeconómico, la diferencia radica en el conocimiento médico y la identidad, que en el caso de las ER suele ser más tardío y conllevar una mayor dificultad diagnóstica en comparación con las enfermedades crónicas (Picci et al, 2015). En muchos casos no se conoce exactamente cuál es la causa de la enfermedad.…”

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Enfermedades raras y discapacidad intelectual: evaluación de la calidad de vida de niños y jóvenes

Martín

Sánchez

Rodríguez

2016

Siglo Cero. Revista Española Sobre Discapacidad Intelectual

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Recepción: 3 de febrero de 2016 Fecha de aceptación definitiva: 30 de junio de 2016 reSuMen: Antecedentes. El principal objetivo de este trabajo ha sido evaluar la calidad de vida en niños y jóvenes con enfermedades raras y discapacidad intelectual, así como conocer la incidencia de determinadas variables (i. e., género, edad, nivel de discapacidad intelectual, tipo de escolarización, tipo de enfermedad y comunidad autónoma) en la variable criterio. Método. Para ello se ha utilizado la Escala KidsLife, elaborada según el modelo de ocho dimensiones de calidad de vida de Schalock y Verdugo. La muestra estuvo formada por 103 participantes con enfermedades raras y discapacidad intelectual, con edades comprendidas entre 3 y 21 años, que recibían apoyos en alguna organización proveedora de servicios educativos, sociales o sanitarios. Resultados. Las puntuaciones más altas se corresponden con la dimensión bienestar físico, mientras que la dimensión inclusión social es la que obtiene puntuaciones más bajas. El nivel de discapacidad intelectual y el de necesidades de apoyo dieron lugar a diferencias significativas en la puntuación total de la escala. El análisis de cada una de las dimensiones muestra diferencias según el género, nivel de discapacidad intelectual y tipo de escolarización. Conclusión. Los resultados abogan por el diseño de prácticas que permitan la mejora de

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Emotional Burden and Coping Strategies of Parents of Children with Rare Diseases

Cited by 46 publications

References 31 publications

Stress and Coping Strategies Among Parents of Children With Autism Spectrum Disorder

Stress and Coping Strategies Among Parents of Children With Autism Spectrum Disorder

Being a Mother of a Child with Prader-Willi Syndrome: Experiences of Accessing and Using Formal Support in Croatia

Enfermedades raras y discapacidad intelectual: evaluación de la calidad de vida de niños y jóvenes

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