Family Quality of Life in Families of Children with Phelan-McDermid Syndrome: A Rare Genetic Disability
Référence bibliographique 
Bruce, Jennifer. 2009. «Family Quality of Life in Families of Children with Phelan-McDermid Syndrome: A Rare Genetic Disability». Mémoire de maîtrise, Montréal, Université McGill, Département de psychopédagogie et psychologie du counseling.
Intentions : The objectives of this research are : « 1. To examine, through interview, rating scale and coding what daily life factors have the most influence on the quality of life in families of children with PMS. 2. To explain, through the use of parental interviews why these factors are important to families’ everyday lives and their overall family quality of life. 3. To discuss how the present research results are consistent or conflicting to the content of other studies. » (p. 25)
Échantillon/Matériau : « Participants for this study included 26 parents of children with PMS, 24 mothers and 2 fathers. Their children with a diagnosis of PMS were ages 2 to 16. Sixteen of the children were female and 10 were male. » (p. 27)
Instruments: Grille d’entretien semi-dirigé
Type de traitement des données : Analyse statistique Analyse de contenu
« Phelan McDermid Syndrome (PMS) has only 400 known cases worldwide. Characteristics of this genetic disorder include a lack of speech, moderate to severe intellectual disabilities and characteristics of autism […]. This study assessed factors contributing to the quality of life in these families using a mixed method approach. […] The present findings demonstrate that PMS families need support in specific areas such as finances, treatment of siblings, religion and spirituality, a family connection, availability of a father, and the agreement of parents. Implications for the literature on ecocultural theory and family quality of life, as well as practical implications for clinicians will be discussed. » (p. ii)