The CareNET trial: Caring for carers of people with advaNced cancer at hospiTal discharge

What: Materials: The Carer Support Needs Assessment Tool - Intervention (CSNAT-I) tool will be used. This is a licensed tool that can be found at www.csnat.org. It consists of 14 domains of need for carer of people with palliative care needs. It is part of the CSNAT-I – a five stage carer-led, clinician facilitated intervention that was developed in the UK and has been validated with community-based carers for people with advanced cancer. This paper-based form is a record that carers can keep and clinicians’ document summary in the electronic medical record. Online learning modules were used to train intervention providers and can be found at the website once license is approved. A local protocol was developed and will be used to assist with intervention delivery and documentation into electronic medical record. Procedures: The intervention includes identification and prioritisation of needs (Stages 1-3); Development of action plan for prioritised needs (Stage 4); and review of whether needs have been addressed; and structured handover of outstanding needs (Stage 5). Needs Assessment After the Occupational Therapist (OT) has completed an initial assessment with patients to determine their needs related to achieving discharge home (e.g., functional limitations, physical care needs, QOL of goals); they meet with the carer to identify and prioritise their discharge needs using the CSNAT-I paper based tool (Stages 1-3). This can occur face to face, via telehealth or the phone depending on carer preference and access. The assessment process involves carers being provided with the 14 domains of need, self-rating how much support they think they need and describing how the need relates to them. For example, the domain “needing help with equipment” may relate to a carer wanting to know how to use a manual lifting device. The carer will then choose three needs they have described that they wish to prioritise and seek support with before discharge home. Responding to needs: The OT identifies with the carer what actions are required to address prioritised needs (Following Stage 4 of CSNAT-I). Actions that need to be communicated to the patient and team is determined between OT and carer at this stage. Actions may be direct OT intervention, referrals to other disciplines and providers; signposted for carers to address themselves or self-directed exclusively by the carer. These are documented on the CSNAT-I which both the carer and OT keep copies of. The OT actions the relevant items within the required time. A pre-discharge review will occur if needed by carer e.g., to check they have all the equipment delivered to their house. Proposed and enacted action plans are communicated to the patient and team members as required. Review: Prior to discharge the OT will ask the carer to nominate the preferred method and time of review required after discharge. Options will be (1) treating OT to phone at time proposed by carer; (2) other key contact identified by carer (social worker, nurse coordinator) or (3) carer contacts treating OT or key contact person at preferred time. Shared review (Stage 5 CSNAT-I) will involve (1) checking if action plan has been completed, and (2) addressing outstanding or new needs identified by or referring to relevant service providers (e.g., GP, community palliative care service, nurse coordinators). Who: Trained occupational therapists will facilitate the delivery of the CSNAT-I aspect of the intervention. Multi-disciplinary interventions will be delivered (in response to CSNAT-I) based on individual need. How: Stages 1 to 4 will be delivered face to face, telehealth or via phone; Stage 5 will be telehealth or via phone. It will occur between the OT and the carer for the patient. Where: Stages 1-4 will occur during acute admission and Stage 5 will occur once the patient has been discharged from the acute hospital. Treating occupational therapists delivering the intervention will be based in the hospital however there may be circumstances where they are conducting a home visit. When and how much: Stages 1-4 during hospital stay and when discharge home has been decided. Stage 5 within 72 hours after discharge (or other times nominated by carer, but no more than 1 week after discharge). Stage 1-4 can occur as separate or combined contacts between OT and carer. It is anticipated that stages 1-4 will take between 20-40 minutes; and stage 5 between 5 -20 minutes. However this will depend on individual needs and whether it is occurring within other bundles of care e.g. psychoeducation. If the person with advanced cancer has a change in planned discharge destination, anticipated care needs, length of stay in hospital; different stages of the intervention can be repeated Tailoring A person-centred model means actions and care generated from the intervention and how it is delivered is individualised and based on personal needs. Strategies used to monitor adherence will include: record of participation rates, outputs from intervention and completion of tool; check points for clinicians to ensure fidelity and completion rates.