Investigating the effect of an Admission Support Plan on improving the hospital admission experience of children and young people with developmental disabilities, communication difficulties and challenging behaviours.

Part 1 (Pre-intervention): Families whose children with DDs (Autism Spectrum Disorder (ASD), cerebral palsy, unspecified language delay, Attention Deficit Hyperactivity Disorder (ADHD), intellectual disability (ID) and global developmental delay) who have been admitted to Starship Children’s Hospital within the last 6 months will be invited via their usual clinicians at Starship Hospital to complete an online or telephone assisted survey regarding their experience of their child’s most recent admission. The online survey will be delivered using ‘Survey Monkey’ technology that is compatible with computer, tablet and mobile devices. It will take approximately 20 minutes to complete online independently and up to 30 minutes with telephone assistance. The telephone assisted surveys will be completed by the primary investigator, Dr Elizabeth Keeling. In order to collect a breadth of responses and achieve thematic saturation, we will recruit approximately 20 participants, of which 50% Maori representation will be sought where possible. Part 2 (Admission Support Plan design): An Admission Support Plan (ASP) that caregivers complete at the start of a hospital admission or ahead of time (such as during an outpatient appointment) will be created. Previously described tools from the literature (Pratt et al, 2012), will be used to guide a New Zealand specific design, paying particular attention to the needs of Maori and Pacific Island patient groups. The specific content of this tool will be developed using a 3-step iterative co-design process including representation from a number of groups: patient/caregivers with Maori and Pacific Island participants, advocates from within the developmental disability sector and staff members (both clinical and non-clinical). It is anticipated that there will be up to 10 participants from the groups mentioned above. Principles for development include (1) ease of completion, (2) specificity for the child, (3) succinctness and (4) acceptability, particularly to the Maori and Pacific Island communities. It is anticipated that staff members on the ward will request completion of the (initially) paper form by families on admission to the ward. Staff will have access to the ASP, to help guide their care of the patient. The co-design process will begin within 2 months of the surveys from Part 1 being distributed. Up to 4, two hour group design sessions will be conducted in person and/or via Zoom and recorded with consent for tool design and editing purposes. These sessions will be conducted by the principal investigator Dr Elizabeth Keeling and supervised by senior researchers where able. Part 3 (Implementation and review): Approximately 2 months after the final co-design session, the ASP will be administered to patients by nursing staff as part of the documentation that is completed at the start of an admission to an inpatient ward at Starship Children’s Hospital, over a period of 2 months. The ASP will be designed to take no more than 10 minutes to complete independently. After the caregiver has completed the ASP, it will be inserted into the clinical notes for staff to access, with a copy in the child’s bedspace to increase visibility. The ASP will be stored along with the patient's clinical notes and may be used again in the rare situation that a patient is readmitted during the implementation phase. Ward staff will be reminded to use the Admission Support Plan where indicated, at the start and middle of the implementation period. As this is an initial rollout to collect patient experience data, data pertaining to whether the ASP was administered to all eligible patients is beyond the scope of the study. A further online or telephone assisted survey, using the same outcome measures to evaluate satisfaction as in Part 1 of the study, will be conducted within 1 month of patient discharge. Families will be contacted using details they submitted when completing the ASP during the implementation period. Part 3 of the study aims to recruit approximately 20 participants of which 50% Maori representation will be sought where possible. A short online survey of staff members who have used the ASP will also be conducted to determine the acceptability, feasibility and preliminary evidence of efficacy within 1 month of completion of the implementation phase. A range of staff members will be approached to include both clinical (for example, nursing and medical staff) and non clinical roles (for example, play specialists). Similarly to Part 1, the online surveys will be delivered using ‘Survey Monkey’ technology that is compatible with computer, tablet and mobile devices.