None listed
Conditions
Brief summary
In the 21st century there have been some significant advances in how we think about ‘health’ and about ‘family-centred services’. As a result, we are changing the ways we try to work with families to help them manage their children’s developmental disabilities. These ideas have been developed and ‘packaged’ – by a team of health services researchers, clinicians and parents – into a set of 5 weekly workshops for parents new to their journey as parents of children with long-term developmental disabilities. These workshops are collectively referred to as ENVISAGE: ENabling VISions And Growing Expectations. ENVISAGE aims to empower caregivers of children with disabilities to build self-efficacy, autonomy, and sense of competence; to increase their skills as parents of children with complicated lives; and to connect with other caregivers to improve parent and family outcomes. We hypothesize that the primary outcomes of ENVISAGE will be positive trends in the caregiver-reported outcomes of family empowerment and caregiver confidence.
Interventions
Caregivers of children with a neurodisability will complete the 'ENVISAGE for Families' program.
The 'ENVISAGE for Families' program consists of 5 online workshops comprising weekly webinars, reading materials, online resources and reflection activities (60 minutes duration); followed by 60 minute online group discussions (Total 120 mins per workshop). Online discussions will be facilitated by a parent collaborator and a clinician/researcher. The workshops aim to provide early exposure to curre
Caregivers of children with a neurodisability will complete the 'ENVISAGE for Families' program. The 'ENVISAGE for Families' program consists of 5 online workshops comprising weekly webinars, reading materials, online resources and reflection activities (60 minutes duration); followed by 60 minute online group discussions (Total 120 mins per workshop). Online discussions will be facilitated by a parent collaborator and a clinician/researcher. The workshops aim to provide early exposure to current thinking and best practices around childhood disability, and to encourage information sharing between families. The five ENVISAGE online workshops will discuss: 1. The World Health Organization's modern way of thinking and talking about 'health', and how the 'F-Words in Childhood Disability' have taken these ideas to families around the world. 2. The importance of development – of children, siblings and of families – as a key way to think about everything we do in our work together with children with developmental challenges. 3. Parenting as "a dance led by the children", and how to dance when the partner doesn't know the steps. 4. Taking care of yourself and your family – because that's good for your children and the important people in your life. 5. Focusing on Communication, Collaboration, Connection – strategies about how to belong to and be involved in the community, and work in partnership with service providers. Each workshop aims to be informative while encouraging caregivers to recognise their own capacities, competence and capabilities to parent their child with an early-onset neurodisability. Participants use of the Moodle site, discussion boards and record and chat function on zoom during online sessions will be monitored to review engagement in workshop materials and online sessions. In addition, attendance at online sessions will be recorded.
Sponsors
Laura Miller
Study design
Allocation
Non-randomised trial
Intervention model
Single group
Primary purpose
Educational / counselling / training
Masking
Open (masking not used)
Eligibility
Sex/Gender
All
Age
18 Years to No maximum
Healthy volunteers
Yes
Inclusion criteria
(1) caregivers of children under the age of 6 years with an identified early onset neurodisability (2) caregivers from Australia and Canada Caregivers will be 18 years or older.
Exclusion criteria
(1) parents who were involved in workshop development or review; (2) parents of children currently going through diagnostic processes and their child has not yet been formally identified as having a neurodisability.
Outcome results
None listed