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

Abstract

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

Positive family connections: co-producing a virtual group programme for family carers of children with learning disabilities or who are autistic

“…Our conclusions reflect many of the themes identified in other co-produced and co-delivered studies with family carers (Borek et al , 2018; Pozniak et al , 2022).…”

Codesigning a social prescribing pathway to address the social determinant of health concerns of children with cerebral palsy and their families in Australia: a protocol for a mixed-methods formative research study

“…The proposed sample size is similar to approaches used in other mixed-methods research for programme codevelopment in children with neurodevelopmental disabilities (including cerebral palsy). 32 33 It is acknowledged that some parent/caregiver participants may have a relationship with child participants, and this may introduce bias in the sampling. Nonetheless, these participants will remain eligible to take part in the study as the lived experience of SDH concerns is individualistic and may differ between children and their parent/caregiver.…”

“…Similarly, approximately 10 children with cerebral palsy, 10 parents/caregivers, and 15 clinicians will participate in components 2 and 3. The proposed sample size is similar to approaches used in other mixed-methods research for programme codevelopment in children with neurodevelopmental disabilities (including cerebral palsy) 32 33. It is acknowledged that some parent/caregiver participants may have a relationship with child participants, and this may introduce bias in the sampling.…”

Partnering with consumers: Do occupational therapists genuinely partner? Can we do more?

“…Four papers focus on occupational therapy education, with three discussing the involvement of lived experience experts in mental health (Happel et al, 2022; Logan et al, 2022; Scanlan et al, 2022) and one discussing consumers providing feedback to students during practice placements (Bevitt et al, 2022). Two focus on the involvement of consumers in developing services (Harris et al, 2022; Pozniak et al, 2022), and three focus on consumer partnerships in research (Chapman et al, 2022; Cox et al, 2022; Liddle et al, 2022).…”

“…Moving to occupational therapy service development, the two included articles provide examples of occupational therapy programmes that have been developed in collaboration with consumers. Pozniak et al (2022) describes the process of co‐developing a programme for parents of children with disabilities. The authors, including consumer‐investigators, identified seven key ingredients for successful parent–researcher working relationships, which included consistent communication, clear roles and expectations, onboarding and feedback, flexibility, understanding, self‐reflection, and funding.…”