Table 7 Examples and frequencies of parental descriptions of food FSZ tactics derived from the open-ended question

Locking and Securing Food Sources (37%^a)

∙We modified our kitchen/living area by creating two separate rooms and then installed locking doors.

∙We moved the entire kitchen to the basement with a locked, alarmed door and unique key.

∙Instead of locking cabinets or fridge, we lock off entire kitchen with a metal gate.

∙We turned an unused bedroom into a pantry with a self-closing door and pin code electronic lock.

∙We use motion sensors, open/close sensors, cameras, and locks. If he gets food, the cameras tell us “how.”

∙Our keys to kitchen cabinets are locked in a safe.

∙I have a wind chime attached to my fridge door with a magnet, to alert me when it is opened.

∙We lock up purses or backpacks where we might have medicine, gum, or mints.

∙Must keep money, food, and snacks from being left in cars, just in case, we always lock the car.

∙Bathroom cupboard locked so no access to toothpaste, mouthwash, flavored antacids, cough drops, or vitamins.

∙We also need to lock up our liquor cabinet.

Preparing, Eating and Discarding Food At Home (25.6%)

∙Proportion food as soon as it is brought home instead of leaving it in bulk packaging.

∙Ensure that only foods that she can eat comes into the house. No junk food allowed.

∙I purchase less food, which means going to the market more often.

∙EVERYONE eats at the table. No food allowed in bedrooms, while watching TV, etc.

∙Scrape leftover food into the garage disposal and run the garbage disposal frequently to ensure no food remains.

∙Must discard bones from chicken, ribs, etc. where he cannot get to them.

∙Table and floor are cleaned after every meal, otherwise he would eat dropped food or lick the floor.

∙Siblings must keep treats or forbidden food a secret, store them in their locked bedrooms, and immediately ∙discard wrappings outside in trash.

∙Don’t allow siblings or family members to keep food in their rooms, desks, or private spaces. Only diet drinks.

∙I sleep on the sofa to supervise and prevent night food seeking.

∙I am always within an arm's reach of her because she is an elopement risk, so I even sleep with her

Alerting Others and Supervision in the Community (14.3%)

∙When he uses Lyft or Uber, I get a link to follow the route to ensure no food-related extra stops.

∙We live nearby restaurants, so we gave them a picture of our son and a caption: Please don't feed me. Call immediately if I am alone. And our phone numbers.

∙The police are aware of her disorder as she ran away to steal food.

∙All my neighbors know about my daughter’s condition, and to call me is she asks for or steals food.

∙Must monitor church coffee hours, candy dishes at the bank, doctor’s office, etc.

∙Alert everyone! Van drivers, Special Olympics coaches, neighbors, church groups.

∙I let people in charge at her day program know about her food issues - then I must trust their supervision.

∙She attends classes at a vocational school and must text us a picture of her lunch tray.

Working with Schools (13.2%)

∙Written into his IEP that food cannot be used in lessons or offered as a reward.

∙We lock her lunch box through the zippers. She hands it over to the school bus driver.

∙Try to ensure a food free curriculum at school, including lessons with pictures of food.

∙Needed to get a 1:1 aide at school to supervise food.

∙She buys lunch at school once a week. We choose healthy options from the menu; staff ensures her tray is okay.

∙Her lunch/snacks are out of sight. We use colored containers, so staff recognize if she is eating other food.

∙We keep her from attending school parties or celebrations that involve food or treats.

∙We have the teacher bring her lunch to eat in her classroom. This avoids her going to the cafeteria.

Scheduled Meals, Snacks (17.3%)

∙Maintain regular times for breakfast, snack, lunch, snack, dinner, and dessert.

∙Post menus each day. Measure food so she doesn’t manipulate different caregivers into giving her more food.

∙Schedule, schedule, and schedule. And always have a back-up plan!

∙Keeping a consistent schedule works the best, it reduces uncertainty or anxiety about next "snack" or "meal."

∙She gets the same number of meals/snacks, the same number of calories, at the same time every day.

∙I always pack a snack in my purse if we are stuck in traffic or running behind schedule.

Restaurants, Parties, Family Gatherings (20.2%)

∙Never let him go to bathroom alone at restaurants, he will grab food from other tables that was left behind.

∙Must hold hands walking through a restaurant as she will take food off plates.

∙Must stay with me or an attendant in any store the entire time as she is very fast getting food.

∙Take waitstaff aside and educate them about PWS and why we will order for her.

∙Remove all condiments from table in a restaurant.

∙Preview restaurant menu and pick two options before going out to a restaurant.

∙She must take half of her restaurant meal in a to-go bag for the next day.

∙We sit next to him at family parties to ensure appropriate portions.

∙We don’t attend family gatherings, it’s too stressful for everyone.

∙Avoid buffet style parties or restaurants!!

∙At parties we give him a plate of food and tell others not to feed him. But this is awkward and hard to monitor