Ready to Eat: Home-based behavioural intervention to help children progress from tube to oral feeding

Behavioural intervention provided face-to-face in homes by a Registered Psychologist and Board Certified Behavior Analyst (BCBA). Waitlist-control: For waitlist-control children, the psychologist will instruct caregivers to continue oral feeding attempts as usual, and the psychologist will conduct meal observations every two months. Meal observations will generally be conducted by video call or review of a video sample provided by the caregiver. Data will be collected regarding primary outcomes. Children will continue to access available DHB services (e.g., feeding groups), and we will maintain contact with health professionals to determine continued eligibility. Pre-evaluation: 1) Feeding difficulties interview (FDI). The structured interview will be completed with caregivers. Consent will be gained to access relevant paediatric reports to identify previous and current medical diagnoses. Specific information will be obtained regarding foods or drinks accepted currently or historically, as well as caregiver responses to challenging behaviours. The caregiver will select an initial group of four target foods. 2) Pediatric Inventory for Parents. This self-report questionnaire has been considered well established at assessing family functioning in the context of chronic childhood medical problems. The questionnaire will also be administered following treatment. 3) Brief meal observation. To obtain true baseline data and plan assessment conditions, the caregiver will be asked to run a brief mealtime (up to 15 min) with the child, using the initial group of foods. Assessment: Up to 3-5 hours, over 6 sessions of 30 minutes each. To be completed over consecutive days within one week. The experimental assessment will be lead by the psychologist with the caregiver also participating at the table. This assessment phase will take place within regular mealtimes (i.e., lunch, dinner), at least 1.5-2 hours from the child’s last meal or tube feed. Assessment will involve a standardized schedule of food presentations with the target food group (i.e., once every 30 seconds), using the target food group. Each assessment meal will last a maximum duration of 30 min, or may end earlier if the child consumes the entire food portion available. If a child accepts food during, praise will be provided by the CI or caregiver. After 15-seconds, the child will be asked to open their mouth (‘show me’) to check if the food has been swallowed. If the child’s mouth is clean, praise is provided. If the child’s mouth is not clean, they will be instructed to ‘swallow’ and no further bites will be presented until a mouth clean is observed. We will evaluate a series of 5-min conditions relevant to feeding using Functional Analysis methods (Piazza et al., 2003), based on information the caregiver provided during the interview. This analysis will involve comparing the situation/s reported to be successful (e.g., presenting a preferred food) with the situation/s reported to be unsuccessful (e.g., presenting novel foods, and negotiating with the child upon refusal to eat). Further assessment conditions (Antecedent analysis) will involve evaluating specific properties of food, drink or feeding method that the caregiver reported to influence eating (Leadley, 2018). Antecedent Analysis conditions will generally involve testing at least one of the following: Volume: Smaller bite sizes (e.g., pea-size, dipped spoon, empty spoon) Texture: Smoother textures (e.g., mashed, chopped, puree) Feeding methods: Changing utensils or comparing adult- versus self-feeding Behavioural data across assessment conditions will be compared. The conditions that show the most differentiation (e.g., where challenging behavior is more likely, where food acceptance is more likely) will inform the child’s treatment protocol. Treatment: Between 5 - 10 hours, spread across mealtimes, and over consecutive days within a two -week period. Treatment sessions will be similar to assessment (up to 30 minutes, in the child’s regular mealtimes). Based on assessment results and input from caregiver and health professionals, treatment could involve the following 1. Antecedent-based interventions: Modifications to food properties or feeding methods, working towards the child's goal. For example, starting with small bite sizes that slowly increase, starting with the adult feeding the child, progressing to self-feeding. 2. Teaching oral-motor skills: If oral-motor deficits are identified in assessment, teaching procedures will be incorporated to teach these skills in consultation with the child's speech language therapist (e.g., teaching lip closure) 3. Reinforcement-based interventions: Providing a preferred activity, food, or escape, upon the child accepting or consuming the food. 4. Extinction-based intervention: If no further interventions are effective, separate caregiver consent will be obtained to implement nonremoval of the spoon or food. In this procedure, the food or spoon is kept in position until the child accepts it, up to a maximum of 30 minutes. Caregiver training and implementation: Up to 2 hours for training, then 1-2 hours per week of monitoring. Upon stable child progress, the caregiver/parent will be trained to implement their child's treatment plan. Training will be conducted by the psychologist and will involve progressive steps including review of the written protocol, role play, and feedback. Upon reaching an accuracy criterion, caregivers/parents will be asked to run as many meals as possible, with psychologist supervision reducing. The psychologist will visit weekly, then fortnightly, with phone or text communication between. The caregiver implementation phase will continue until tube feeding ceases, or at six months from admission. Follow-up: One hour visits at 1,3,6, and 12 months from the end of the study. Follow-up visits will involve a meal observation and collection of primary outcome data.