Medicine and Health Sciences Commons^™

Moving From Parent "Consultant" To Parent "Collaborator": One Pediatric Research Team's Experience., Doreen Bartlett, Lisa A Chiarello, Tina Hjorngaard, Barbara Sieck Taylor

Physical Therapy Publications

We share our experiences as academic physical therapists and parents of young people with cerebral palsy working together as a research team, describe and critically review how our working relationship has evolved and propose further enhancements to realize our shared vision. This manuscript is informed by a call for “family-centered research,” transcripts of face-to-face meetings held over a period of 11/2 days, the INVOLVE document and our experiences over almost a decade, as well as other related literature. Authentic collaborative research partnerships between academic researchers and parents embodying trust, mutual respect and shared social responsibility take time and effort to …

Understanding Participation Of Children With Cerebral Palsy In Family And Recreational Activities., Mohammed S Alghamdi, Lisa A Chiarello, Robert J Palisano, Sarah W Mccoy

Physical Therapy Publications

AIMS: The primary aim of this study was to determine the effect of age, sex, gross motor, manual ability, and communication functions on the frequency and enjoyment of children's participation in family and recreational activities. The secondary aim was to determine the relationships between motor and communication functions and participation.

METHODS: Participants were 694 children, 1.5-12 years old, with cerebral palsy (CP) and their parents across the US and Canada. Parents rated children's frequency and enjoyment of participation using the Child Engagement in Daily Life measure. Parents and therapists identified children's level of function using Gross Motor Function Classification System …

Investigating The Needs Of Parents Of Premature Infants’ Interaction In The Neonatal Intensive Care Unit, Maureen A. Rinehimer

Seton Hall University Dissertations and Theses (ETDs)

Parents and/or caregivers of premature infants provide the interaction needed to promote better outcomes for these challenged infants at risk for developmental delays. This descriptive, exploratory study utilized convenience sampling. Inclusion criteria consisted of parents/caregivers who were at least 18 years of age and older with infants born 35 weeks gestation or less and currently in the NICU. This study focused on the research question: What do parents perceive they need in the NICU to enjoy interacting with their infant in the home? To collect the data needed to capture the perceptions of parent’s needs of infants in the NICU, …

Parents' Experiences And Perceptions When Classifying Their Children With Cerebral Palsy: Recommendations For Service Providers., Natalie V Scime, Doreen J Bartlett, Laura K Brunton, Robert J Palisano

Physical Therapy Publications

AIMS: This study investigated the experiences and perceptions of parents of children with cerebral palsy (CP) when classifying their children using the Gross Motor Function Classification System (GMFCS), the Manual Ability Classification System (MACS), and the Communication Function Classification System (CFCS). The second aim was to collate parents' recommendations for service providers on how to interact and communicate with families.

METHODS: A purposive sample of seven parents participating in the On Track study was recruited. Semi-structured interviews were conducted orally and were audiotaped, transcribed, and coded openly. A descriptive interpretive approach within a pragmatic perspective was used during analysis.

RESULTS: …