L'expérience d'être parent d'un enfant polyhandicapé hébergé
Institutionalization of a child with multiple disabilities, that is, a child with a severe motor and profound intellectual disabilities, occurs in Quebec with little awareness within the community. To date, knowledge of pediatric institutionalization and the parents’ experiences is lacking. This lack of knowledge does not allow the development of nursing interventions suited to the needs of the parents. To alleviate this situation, an inspirational phenomenological study was conducted to explore the meaning of being a parent of a child with multiple disabilities institutionalized in a long-term care pediatric facility. Seven individual semi-structured interviews were conducted with the parent of a child with multiple disabilites housed in a pediatric facility in the Greater Montreal Area. To adopt a systemic and contextual vision related to the field of nursing,  the family systemic approach according to the Calgary model (Wright & Leahey, 2013) was used as a reference. This inspirational phenomenological study identified three themes: a) institutionalization of one’s child: a hard decision to accept, b) the meaning of institutionalization: a positive experience both negative, and c) reappropriation of the parental role. This study helps to clarify the unique features of the experience of being a parent of an institutionalized, severely disabled child.  It also highlights the feelings of the parents, their feedback and suggests how to adapt their parenting role when their child is institutionalized. These results will influence or guide nurses in their daily adapted and personalized family interventions to the needs of parents living in similar circumstances.
Parent Child Multiple handicaps Résidential facility Long term pediatric care Phenomenology Calgary family assessment model