None listed
Conditions
Brief summary
This mixed methods study aims to improve tertiary care hospital experiences of, and service delivery to, children with medically complex cerebral palsy and their caregivers. We will use an integrated knowledge translation approach to: 1) describe and compare service use and outcomes between children who receive support from a state-wide multidisciplinary Complex Care Hub (CCH) situated within the Royal Children’s Hospital (RCH) and those who do not and 2) gain stakeholder perspectives between the 2 groups through focus groups and/or interviews with parents and (where possible) young people with cerebral palsy as well as multi-disciplinary clinicians working with this population.
Interventions
A state-wide multidisciplinary Complex Care Hub (CCH) at The Royal Children's Hospital which was implemented as part of standard treatment in 2017.
Phase 1. The medical records of participants will be viewed and quantitative data collected on: number of emergency department presentations and inpatient admissions, length of inpatient admissions, number and length of ICU admissions, number and profile of hospital department appointments, number and profile of community referrals, socio-demographi
A state-wide multidisciplinary Complex Care Hub (CCH) at The Royal Children's Hospital which was implemented as part of standard treatment in 2017. Phase 1. The medical records of participants will be viewed and quantitative data collected on: number of emergency department presentations and inpatient admissions, length of inpatient admissions, number and length of ICU admissions, number and profile of hospital department appointments, number and profile of community referrals, socio-demographic characteristics (e.g., living situation, need for interpreter, social work involvement) of children with and their families, functioning/disability profile (movement disorder type, functional status including Gross Motor Function Classification System level (GMFCS ), Manual Ability Classification System level (MACS), Communication Function Classification System level (CFCS), Eating and Drinking Classification System level (EDACS), associated impairments related to intellectual impairment, vision, hearing and behaviour) This information will be collected for the 3 year period January 2019 to December 2021. Phase 2. A smaller group of parents and clinicians from the RCH will also be involved in qualitative focus groups or interviews to explore their experiences and perspective. These will occur within 6 weeks of enrolment pending participant availability
Sponsors
The Murdoch Children's research Institute
Eligibility
Sex/Gender
All
Healthy volunteers
No
Inclusion criteria
1. The child has a diagnosis of cerebral palsy and has either received services within the CCH between 1 January 2019 and 31 December 2021 or the RCH without CCH services and has been matched to a clinically similar child (as above). 2. Parents of children (and where possible children) with a diagnosis of cerebral palsy who are recruited to the study and healthcare professionals working with children with cerebral palsy at the RCH during the three-year period January 2019 to December 2021,
Exclusion criteria
Inability or unwillingness of participant or legally acceptable representative to give written informed consent.
Outcome results
None listed