PARENT PERCEPTIONS OF RAISING A CHILD WITH CEREBRAL PALSY: INVESTIGATION OF THE IMPACT OF THE INITIAL DIAGNOSIS

Objectives: The primary objectives of the following presentation is to: 1) Identify the phases of attachment that a young child with a severe physical disability and their parent go through to form a quality attachment with one another; 2) Identify the factors that appear to influence the manner in which a young child with a severe physical disability and their parent form an attachment with one another; 3) Identify the role of parental grief and acceptance as part of having a young child with a severe physical disability in the formation of attachment; and 4) Identify strategies to help parents overcome the obstacles posed by a physical disability in order to emotionally connect with their child and form a quality attachment with them.

Methods: The data for this investigation were collected through the conducting of focus group interviews of parents of infants born with a severe form of cerebral palsy and/or medical condition.

Results: Traditional research on young children with physical disabilities tends to focus on issues about motor development not on social-emotional development. The social-emotional domain of development is equally important to explore because it provides insight into how the presence of a disability affects the quantity and quality of interactions between a parent and young child. A participant in the investigation adds that how children with physical disabilities express their attachment to their parents can have a profound impact on the caregiver's perception of the attachment process. Many parents of physically challenged children misinterpret their child's physical expression of social engagement and attachment. For example, “parents may feel their hypotonic child's arching when held is a sign of disengagement rather than a response to being held and moved”

Conclusions: Strong attachments formed in early infancy serve as building blocks for development and provide the infant with a secure, predictable foundation to explore the world around them. Two factors affecting attachment, especially among children with severe physical disabilities are health and physiological state. A majority of these children have significant heart and respiratory problems as well as feeding and bowel difficulties as a result of their physical disability. Children with severe forms of cerebral palsy require the parent to always meet the physical needs of their child first and the socio-emotional needs of their child and themselves second. In combination, such factors hinder a parent's ability to interact with their child and to provide consistent follow-through with their emotions. Therefore, the integrity of the parent-child dyad as a result of a physical anomaly may be compromised. Given the increase in the rise of developmental disabilities [particularly cerebral palsy] as a result of the increase in the rise of survivors of extreme prematurity efforts to provide early intervention services need to encompass the domains of infant mental health and parent/family support. The goal of such a combined approach to intervention, therefore, would focus on examining how families of young children, specifically young children with disabilities, respond to their child's cues, interpret their child's behavior, and establish a reciprocal social relationship.