ENabling VISions and Growing Expectations (ENVISAGE): Parent reviewers’ perspectives of a co-designed program to support parents raising a child with an early-onset neurodevelopmental disability

Introduction:In childhood disability research, the involvement of families is essential for optimal outcomes for all participants. ENVISAGE (ENabling VISions And Growing Expectations)-Families is a programme comprising five online workshops for parents of children with neurodevelopmental disorders.The workshops aim to introduce parents to strengths-based perspectives on health and development. The research is based on an integrated Knowledge Translation (iKT) approach, in which knowledge users are involved throughout the research process. This article is co-authored by the ENVISAGE health service researchers (N = 9) and parent partners (N = 3) to describe the process through which we co-developed and implemented the workshops.Methods: Collaborative auto-ethnography methods, based on a combination of interviews, qualitative surveys, and discussions held to complete the Guidance for Reporting Involvement of Patients and Public-2 tool, were used to describe the co-design process, the benefits gained, and lessons learned. Findings: Parents (n = 118) were involved in developing and implementing the ENVISAGE workshops across the different phases, as partners, collaborators, or participants. Three parents were involved as investigators throughout. We identify seven key ingredients that we believe are necessary for a successful parent-researcher working relationship: (i) consistent communication; (ii) clear roles and expectations; (iii) onboarding and feedback; (iv) flexibility; (v) understanding; (vi) self-reflection; and (vii) funding. Conclusion: Patient and family engagement in research is a rapidly growing area of scholarship with new knowledge and tools added every year. As our team embarks on new collaborative studies, we incorporate this knowledge as well as the practical experience we gain from working together. K E Y W O R D S childhood disability, co-creation, co-development, family engagement in research, parents, participatory research

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“…Their feedback was used to refine the workshops prior to implementation. The results of Phase 3 are reported elsewhere (Miller et al, 2022).…”

Section: How We Worked Together (Phases 2-4)mentioning

confidence: 99%

Co‐development of the ENVISAGE‐Families programme for parents of children with disabilities: Reflections on a parent–researcher partnership

Pozniak

Cross

Babic

et al. 2022

Aus Occup Therapy J

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“…Coaching 24,25,28,43 and educational programmes 44 emerged as low‐cost strategies to empower and engage the family as the centre of the process of care. Simple educational sessions may improve caregiver stress, 44 mental health, 45 quality of life, 46 and their knowledge about CP 47 . These programmes should be adequately tailored so that the family burden is not increased 48 .…”

Section: Discussionmentioning

confidence: 99%

F‐words and early intervention ingredients for non‐ambulant children with cerebral palsy: A scoping review

Campos

Hidalgo‐Robles

Longo

et al. 2023

Develop Med Child Neuro

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AimTo explore the ingredients of early interventions provided to young children with cerebral palsy (CP) who are classified in Gross Motor Function Classification System (GMFCS) levels IV and V, and to identify the ‘F‐words’ addressed by the interventions.MethodSearches were completed in four electronic databases. Inclusion criteria were the original experimental studies that fitted the following PCC components: population, young children (aged 0–5 years, at least 30% of the sample) with CP and significant motor impairment (GMFCS levels IV or V, at least 30% of the sample); concept, non‐surgical and non‐pharmacological early intervention services measuring outcomes from any of the International Classification of Functioning, Disability and Health domains; and context, studies published from 2001 to 2021, from all settings and not limited to any specific geographical location.ResultsEighty‐seven papers were included for review, with qualitative (n = 3), mixed‐methods (n = 4), quantitative descriptive (n = 22), quantitative non‐randomized (n = 39), and quantitative randomized (n = 19) designs. Fitness (n = 59), family (n = 46), and functioning (n = 33) ingredients were addressed by most experimental studies, whereas studies on fun (n = 6), friends (n = 5), and future (n = 14) were scarce. Several other factors (n = 55) related to the environment, for example, service provision, professional training, therapy dose, and environmental modifications, were also relevant.InterpretationMany studies positively supported formal parent training and use of assistive technology to promote several F‐words. A menu of intervention ingredients was provided, with suggestions for future research, to incorporate them into a real context within the family and clinical practice.

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“…The median age at the first allied health appointment reduced to 5.1 months CGA, and 63% of children on pathway 1 had their first EI appointment with allied health in phase C. Te Velde et al 19 also found some babies were referred for CP-specific early intervention before the early diagnosis Open access clinic appointment. Earlier access to EI services meets parents' needs for early, timely diagnostic information and access to interventions, 44 including those promoting family function, 45 in alignment with both the early detection 7 and early intervention 13 guidelines. Early detection also enables clinicians to exclude a diagnosis of CP and therefore remove the potential stress of a CP diagnosis for the families of children with a neurodisability that is not CP, and to redirect intervention efforts appropriately.…”

Section: Discussionmentioning

confidence: 99%

“…[53][54][55][56][57][58] While these are the first steps to tailoring care and providing appropriate referrals, [59][60][61] children living in social disadvantage are more vulnerable to existing structural health system inequities 62 such as siloed care and poor transitions between health and disability services, and some children are still falling through the gaps. A combination of health system changes, consumer-informed care coordination 63 roles which work in partnership with families and build capacity to navigate complex service pathways, and programmes like ENVISAGE 45 which empower parents of children with neurodisability will contribute to improving engagement and outcomes. The Access to Care Framework, 64 which outlines patient and provider influences on access and engagement, could be used to guide future research and reduce complexity at system, organisational and service levels.…”

Section: Discussionmentioning

confidence: 99%

From guidelines to practice: A retrospective clinical cohort study investigating implementation of the early detection guidelines for cerebral palsy in a state-wide early intervention service

et al. 2022

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ObjectivesTo report on knowledge translation strategies and outcomes from the implementation of the early detection guidelines for cerebral palsy (CP) in a state-wide tertiary early intervention (EI) service and investigate the impact of social determinants on clinical services.DesignRetrospective longitudinal cohort study.SettingThe Western Australia tertiary paediatric EI service.ParticipantsEI clinicians, consumers and children using the EI service.Outcome measuresKnowledge translation strategies including consumer perspectives, clinician training and Communities of Practice (CoP) guided implementation. We measured changes in referral number and age, delivery of early detection and intervention following the implementation of the guidelines. Exposure to adverse childhood experiences (ACEs), appointment non-attendance (DNA) rates, remoteness and socioeconomic quintiles were used to measure social determinants of health using negative binomial (Incidence Rate Ratios, IRR) and logistic regression (Odds Ratios, ORs).ResultsTen consumers participated in Focus Groups, 100 clinicians were trained and 22 clinicians established a monthly CoP. Referrals increased fourfold to 511 children. Corrected gestational age at referral decreased from a median of 16.1 to 5.1 months (p<0.001) and at first appointment from 18.8 to 6.8 months (p<0.001). Children living in social disadvantage had the highest DNA risk (quintile 1 vs 5: IRR 2.2, 95% CI 1.1 to 4.6, p=0.037). Children exposed to ACEs had higher odds of living in social disadvantage (quintile 1 vs 5, OR=3.8, 95% CI 1.4 to 10.0, p=0.007). No significant association was found between remoteness and DNA rate or ACE score.ConclusionsImplementation strategies reduced referral age and improved the delivery of early detection assessments. Further investigation of the association between social disadvantage, DNA risk and ACE score is required in the development of a state-wide early detection network.

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ENabling VISions and Growing Expectations (ENVISAGE): Parent reviewers’ perspectives of a co-designed program to support parents raising a child with an early-onset neurodevelopmental disability

Cited by 19 publications

References 24 publications

Co‐development of the ENVISAGE‐Families programme for parents of children with disabilities: Reflections on a parent–researcher partnership

Co‐development of the ENVISAGE‐Families programme for parents of children with disabilities: Reflections on a parent–researcher partnership

F‐words and early intervention ingredients for non‐ambulant children with cerebral palsy: A scoping review

From guidelines to practice: A retrospective clinical cohort study investigating implementation of the early detection guidelines for cerebral palsy in a state-wide early intervention service

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