Ready to Eat: Intervention for tamariki to move from tube feeding to eating

This study involves behavioural intervention to improve eating and drinking skills, within family homes. The expected study duration ranges from a total 20 to 24 months, depending on the waitlist period (2-6 months), and including the intervention (6 months) and follow-up (12 months of spaced out visits). The expected number of study visits could range from 35-65 visits (to the home/local setting/early childhood setting), depending on the waitlist length, and progress of the child in the intervention. An initial intensive period involves daily visits (Mon-Fri), followed by caregiver support in twice weekly visits (that reduce based on progress). First visit (Baseline)____________ We will visit the child at home and observe a mealtime (10-15 minutes). We will collect information about the child’s eating and we will measure their weight. We will also ask whanau to complete a 10-minute questionnaire about caregiver stress. After this visit, we will inform whanau of the date where the intervention will start, and the length of the waiting period. Waitlist______________________ During the waitlist we will visit to collect information like the baseline visit, every two months. The waitlist period will vary for each child, but it could be up to six months. The waitlist duration will determined by 1) the next available starting slot for a child in the study and 2) participant choice (e.g., after an event, during a Kindergarten holiday period). Some visits may instead be conducted by video call if there is whanau preference. Intervention_________________________ The intervention will take place over a 6-month period, involving the stages below. The intervention is administered by a Psychologist. Postgraduate students (Masters level) also assist with later parent implementation. Intensive Period (Initial 2-3 weeks) The intensive period will generally run from Monday-Friday, for two to three weeks. Days may run from 9.30-3pm, with breaks for tube feeding or naps. Depending on the age of the child and their naps, we may do mornings only and run for a three week period if needed. Initial assessments (Day 1) 1. Feeding difficulties interview -An interview to collect information about the child’s tube and oral feeding. This will take around 30-60 minutes. 2. Brief mealtime observation. Observing a mealtime attempt conducted by the caregiver 3. Preference assessment – We will ask about toys or activities that the child likes. We will give your child a choice of these activities to see which ones they like the most. These items will be used during breaks between meals or as part of the child’s plan (described later). Observational mealtime assessment (From Day 2) We will complete a mealtime assessment based on the information provided in the interview, and health professional recommendations. Each meal will be at least 1.5 – 2 hours after the child’s last meal or tube feed. Whanau will be able to observe and participate in these meals at the table. We’ll run a series of meals where we will first test the situations that were most often identified with challenging behaviour (e.g., presenting new foods), versus a situation where the child may accept food, and challenging behaviour does not occur (e.g., allowing choices of preferred foods). As part of this process we may ask caregivers to respond to the child’s challenging behaviour in ways that they have reported to do so (e.g., coaxing them to eat). We call this a Functional Analysis, and if we see more challenging behaviour in one situation, this gives us information about possible reasons why that occurs. We may also test some more specific situations relating to how the food or drink is prepared or presented. For example, we may compare very small bite sizes with a typical bite size, or giving the child the choice to self-feed. During these assessment sessions, foods will be presented often, and each session will usually run for five minutes. There is no expectation for the child to accept food. If they refuse we will remove it for a brief period then try again, up until we reach the end of the meal. We estimate that the observational assessment would take 2-3 hours, across mealtime sessions and play breaks. We expect that this assessment is completed by Day 3 of the intensive period. Mealtime strategies (From Day 3) We will discuss assessment results with whanau and health professionals. We will discuss recommendations for initial strategies to use during mealtimes. The CI will initially use the strategies with the child. We will start by using the foods that the child was most likely to accept during assessment, and work step-by-step to reach the child’s target food or drinks (e.g., moving from a small spoon volume to a larger spoon volume). We will also incorporate teaching strategies suggested by the Speech Language Therapist, if required to progress the child’s oral skills (e.g., lip closure, chewing). If the child’s feeding does not improve within a short period of time, we will discuss further options. Further reward-based treatments (Reinforcement) would involve providing preferred activities (that we identified in our preference assessment), toys, or foods after the child’s acceptance of food. If varied reward-based options are not successful, we will discuss non-removal of the food as a last resort. This involves keeping the food near to the child (e.g., at their mouth) until they accept it. This procedure would continue until the child accepts food or a maximum of 10 minutes. We expect that this stage could take a total of 5-10 hours including meal sessions and play/reward breaks between sessions. If we can see that the strategies are working, we will train caregivers to use these. We will also create a family/whanau mealtime plan together, where we consider all the day-to-day parts of feeding the child alongside other activities (e.g., daycare, tube feeds). We expect to start the training and develop the plan on the last few days of the intensive period (approaching 2 or 3 weeks). Our training may take up to 2 hours. Training involves reading the child’s plan and role-playing the strategies. We will record data about caregiver accuracy in running meals (e.g., providing praise), when accuracy is at a high level, caregivers will transition to running meals according to the plan. Caregiver support (up to 6 months) At the end of our intensive period, we will make a plan for ongoing visits, which will be twice per week. These will mostly be with a postgraduate psychology student, with Dr. Leadley visiting fortnightly. If the child is attending an early childhood setting, some visits may also occur there, to support progress. We will talk with families to set clear goals for the support period, that focus on the child developing eating/drinking skills to be able to stop tube feeding. During caregiver support, we ask that caregivers use the mealtime plan daily, working up to providing all required meals within one month (e.g., 4-5 meals per day. If the child continues to make progress, we will plan for meals to occur in places outside of home (e.g., church, Marae). During this time, the dietitian will review progress at least fortnightly to determine tube feeding changes. The dietitian will make these decisions during a home visit, a clinic visit we attend together, or by email or phone call. On average, running oral meals for the child could take approximately 18 hours per week (based on 5 x 20 minute meals per day + prep). Whanau may also need about 30 minutes per week to communicate with the researchers. Follow-up_______________________ Visits occur at 1,3,6, and 12 months from the end of intervention. A meal observation is conducted and information about eating/tube feeding collected. Follow-up visits may be conducted by video call if preferred by the family.