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Involving Individuals with Developmental Language Disorder and Their Parents/Carers in Research Priority Setting
Published on: June 6, 2020
Learning and Sharing Together to Work Better Together: Service Providers' and Parents' Perceptions of the
Alice K Soper1,2, Marilyn Wright1,2, Debra Hughes2
1School of Rehabilitation Science, McMaster University, Hamilton, Canada.
Background:
ENabling VISions And Growing Expectations (ENVISAGE) is a programme focused on strengths-based approaches to child development, empowering parents of children with neurodevelopmental disabilities. The established ENVISAGE-Families and ENVISAGE-Service Providers programmes have been evaluated through several studies, demonstrating positive impacts. Building on the success of these programmes, an 'integrated' version was co-developed and co-delivered to both parents and service providers through five online weekly workshops, encouraging both groups to learn with and from each other.
Methods:
A pilot study was conducted to evaluate ENVISAGE-Integrated. The programme was delivered in five cohorts of five to eight participants each, co-facilitated by a parent and service provider from the ENVISAGE research team. Participants completed five weekly workshop surveys and a semi-structured interview after the programme. Quantitative data from surveys were analysed using descriptive statistics and Mann-Whitney tests. Qualitative data from semi-structured interviews were explored using thematic analysis.
Results:
Nineteen service providers and 11 parents of children with neurodevelopmental disabilities participated in the programme at one children's treatment centre. Survey responses indicated high levels of agreement regarding comfort, perceived learning and meaningfulness of participating with parents and service providers. Thematic analysis generated three themes that reflected the perceptions and experiences of both parents and service providers: (i) reaffirmation of the importance of collaborating and relationship-building; (ii) expansion of understanding how to work together; and (iii) appreciation for each other's realities as people first and foremost. A fourth theme relevant to parents was a sense of connection and support from other parents' shared experiences. A fifth theme relevant to service providers was validation of clinical practice through alignment of content with parent values.
Conclusions:
ENVISAGE-Integrated offered benefits by facilitating collaborative learning between parents and service providers. Although findings are promising, ENVISAGE-Integrated requires thoughtful recruitment and balanced group composition to ensure the programme benefits both parents and service providers.
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