EPIC-ND: a multisite, randomised controlled trial evaluating the effectiveness of social prescribing for children with a neurodisability and their parent/carers

Intervention arm = social prescribing (resource pack and Community Linker) The intervention is an adjunct to standard treatment. Participants randomised to the social prescribing group will receive the resource pack (as described above) plus in-person Community Linker. This will be a case-by-case intervention based upon the needs of the family. Participants will also receive the resource pack containing information about supports and services that may help address unmet social needs (USNs). The resource pack will be available in hard-copy and online. The resource pack has been specifically designed for this study, and is a compilation of helpful links and organisations that can assist families with their unmet needs. After consent, randomisation, and intervention allocation, parent/carer participants will be contacted by the site-specific Community Linker to schedule an intake appointment. The Community Linker will explain the resource pack during the intake meeting (described below). They will not receive a separate phone call from the Research Assistant. All participants in the intervention arm will have an initial intake appointment with the Community Linker. Dependent on participant preference, the intake appointment may occur face-to-face at the Rehabilitation Department immediately after randomisation. Alternatively, it may occur via phone, videoconference, or in-person at a different time that suits the participant. All participants will be contacted by the Community Linker within 1 week of randomisation to arrange their intake appointment. The intake appointment will take approximately 60 minutes. During the intake appointment, participants will discuss with the Community Linker their unmet social needs; the current supports and services they are accessing; what they need help with; and their goals for managing their unmet social needs. A personalised care plan will be made together with the parent/carer. Parent/carers will also elect their preferred mode (e.g., videoconference, phone call, email) and frequency of communication (e.g., once-a-week, once a fortnight) with the Community Linker moving forward which can be revised at any time should the parent/carer change their preferences or needs (e.g., require additional/less support). During the initial intake appointment, the Community Linker will also administer the baseline research questionnaires with the parent/carer and provide high-level guidance to navigate the resource pack. A Community Linker is a trained, non-medical personnel who assist parent/carers to connect with appropriate services and supports to address their unmet social needs. It is not a therapeutic role. Community Linkers provide practical, hands-on support navigating services e.g., finding an appropriate local community service, making referrals to services, help completing forms, follow-up with services, booking appointments. An example USN is "financial hardship". The Community Linker may provide support by scoping edibility for different rebate schemes and/or government benefits and entitlements, they can support the parent/carer to find a suitable scheme to meet their family's needs, complete the required documents, and lodge the submission. The Community Linker will be employed under an NSW Health “Allied Health Assistant” role. The Allied Health Assistant role is utilised by the NSW Children’s Hospitals Rehabilitation Departments and Social Work Departments for similar positions providing practical support to families but not therapeutic intervention. Before commencing the role, the Community Linker will receive approximately 4 weeks of training delivered by the research team and external providers. This will involve a combination of face-to-face and online training (delivered over Zoom; online modules). During this onboarding, training duration and frequency will vary (estimated multiple 1–2-hour sessions). Following onboarding and during intervention delivery, the Community Linker will have ongoing professional development training with the Rehabilitation Service Social Worker (weekly, 1 hour) and research team (fornightly, 1 hour). The Community Linker will be managed by each Rehabilitation Service manager with supervision by the respective Rehabilitation Service Social Worker and the EPIC-ND Chief Principal Investigator, Project Coordinator, and Site Principal Investigator. Each site will be provided funding to employ a site-specific Community Linker (exact funding and FTE specified in CTRA). Approximately, 0.6-0.8 FTE is available per site to employ a Community Linker (or job-share arrangement of two Community Linkers). The Community Linker will provide personalised 1:1 support in-person, via phone call/text message, or via videoconference visit (determined by participant preference) for a period of 6-months. The frequency of engagement will depend on participants preferences and needs. The Community Linker will conduct minimum monthly check-ins in person during clinic, over the phone, email, or videoconference (determined by participant preference). The Community Linker will keep a logbook including (but not limited to) contact attempts, successful contact with participants and service providers, tasks completed. When supporting families, the Community Linker may be required to engage with the child/young person with neurodisability in addition to the parent/caregiver. For example, when supporting the family with “childcare/schooling” USN, it may be relevant to engage with the child/young person regarding accessibility needs etc. Or for example, when supporting the family with “government benefits and vouchers” USN, it may be relevant to engage with the child/young person accessing the disability support person if they are 16 years of age or older. Throughout engagement with families, Community Linkers will ask parent/caregiver if they would like to include their child/young person in their conversations, if this is relevant to the families’ circumstances and their USN.