Equity Pathways in Integrated Care in Cerebral Palsy (EPIC-CP): a pilot clinical trial of social prescribing for children and young people with cerebral palsy and their parents/caregivers

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 resource pack plus in-person Community Linker. This will be a case-by-case intervention based upon the needs of the family. After enrolment, baseline assessment, and randomisation, allocated participants receive the resource pack and will be scheduled for an intake appointment to connect with the Community Linker. Participants will also receive the resource pack containing information about supports and services that may help address unmet social needs. 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. Examples of supports and services listed include “Ask Izzy”, “NSW Public School Finder”, information on the National rent affordability scheme and “Secondbite”. A community Linker is a trained, non-medical personnel who assists parents/caregivers 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, and booking appointments. Community linkers will be employed under NSWHealth and will thus be required to complete the mandatory online Health Education and Training Institute (HETI) modules (https://www.heti.nsw.gov.au/education-and-training/my-health-learning/mandatory-training). They will also complete additional modules including cultural competence training, family care and support framework training, NSW Health Education Centre Against Violence training and child protecting training. They will also be engaging in regular meetings with the research team, other community linkers and their site-specific social worker and service manager. The community linker will be expected to have extensive knowledge of services and disability to effectively carry out their role in this intervention. All participants in the intervention arm will have an initial intake appointment with the Community Linker which will be approximately 30-60 minutes in length. 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 have an intake consultation within 1 week of enrolment and randomisation to the social prescribing arm. 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/caregiver. Parents/caregivers 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/caregiver change their preferences or needs (e.g., require additional/less support). 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 3-months. The frequency and length 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). Each Community Linker will keep a logbook of their activities including type of social care navigation activities provided, e.g., advice regarding services, attending services with families, types of services, referrals made to services collected, etc. to monitor adherence to the intervention.