Oral Feeding Chronically Critically Ill Children: Experiences and Information Needs of Families

1
Oral Feeding Chronically Critically Ill Children
Experiences and Information Needs of Families

• Heather Keskeny, MA, CCC-SLP
• Aaron Chidekel, MD
• Alfred I. duPont Hospital for Children
• Wilmington, Delaware

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Learning Objectives

• To identify
• common factors in the medical history of infants
  requiring tracheotomy
• common feeding and swallowing outcomes of infants
  following tracheotomy
• common trends in the concerns of families of
  children following tracheotomy

3
Background

• Swallowing dysfunction is frequently associated
  with tracheotomy placement (1-15)
• Speech language pathologist/Swallowing specialist
  frequently involved
• Patient care
• Family/patient education

4
Factors Which Complicate Family Education

• Adult population
• Decreased comprehension of diagnosis, prognosis,
  or treatment plan (17)
• Caregivers need multiple areas of education (16)
• Nature of patient illness
• Prognosis
• Impact of treatment on patient experience
• Complications
• Expected care needs after hospitalization
• Treatment alternatives

5
Purpose

• Pediatric population needs documentation
• Caregiver experiences
• Impact of tracheotomy tube
• Outcomes
• Needs of patients and families

6
Subjects and Methods

• Subjects (N10)
• Parents of children with a tracheotomy tube
• No neurologic impairment
• 1-year-post tracheotomy tube placement or more
• Recruited during a routine pulmonology clinic
  visit or short hospital stay
• Parental characteristics
• English speaking
• 70 Caucasian
• Aged 22-43 years
• Education
• All high school grads
• 3 college grad
• 1 Masters degree

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Procedure

• Structured survey developed
• Review of literature regarding family education
• Review of medical history to identify trends
• Implementation
• IRB approval
• Telephone interview
• Face to face interview during hospital stay
• Responses transcribed
• Similarities and themes identified

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Results Medical History

• I felt the overnight feeds kept his feeding
  down during the daySo my husband and I decided
  to pull the NG out for 2 days. His eating then
  turned around. At the same time we gave him his
  favorite baby food Hawaiian delight!

9
Results Medial History

• She was intubated for surgeries. She would
  stay on the vent for a week after, but would come
  off. At 6 months old, she had a surgery and never
  came off the vent.

10
Results Swallowing/Dysphagia

• When we came home, the speech therapist
  would stimulate her gums. She worked on how to
  get her reflexes back to normal because if you
  touched her gums, she gagged. Nothing was done
  with her when she was in the hospital for 7
  months when she was a baby.

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Results Feeding Outcomes

• We always had a terrible time with
  chewables. She chewed until it was completely
  dissolved. She liked chewables as long as they
  were soft. Meat and stuff hard to chew she
  didnt eat until decannulation. It took 6 months
  after decannulation and slowly she started eating
  it without complaining.

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Trends in Caregiver Concerns

• Ability
• Anatomy and physiology questions
• Interest
• Risk of aversion
• Timeline
• Speed of progress

13
Ability/Function of Swallowing Mechanism

• We never knew anyone with a trach before and
  didnt know what to expect. I wondered if he
  would take to eating normally because his palate
  had changed (from the intubation) to
  tubular-shaped. It was always a concern.
• I didnt understand what the trach was and after
  I saw it I had no idea how she would eat.
• If they (children with tracheotomy tubes) are
  able to eat anything! If food goes in the trach
  or if that is 2 separate areas. If they can eat
  and what they can eat.

14
Development of Interest in Eating

• He was intubated for so long we talked about
  aversion and if he would be interested.
• If I had known we were trying to get her
  reflexes back to normal I would have kept trying.

15
Timeline of Prediction for Progress

• How long would he need to learn?
• When would we be able to begin the feeding
  process? We were trying to get rid of the NG tube
  but they didnt agree with us because of risk of
  aspiration.

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How Concerns were Addressed

• Through discussions with speech therapist (5)
• The feeding therapist told us how it would be
  difficult because she may not feel the pressures,
  so it was nice to know that before hand.
• Through discussions with nursing (5)
• I was very depressed and the nurses helped me
  through that.
• Through discussions with other medical staff
  (i.e. MDs)
• All my questions were answered in detail. You
  know me Im going to get my answer one way or
  another, even if I have to make an appointment
  with the doctor to do it.

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Conclusions to Date

• Common histories
• Tube feedings
• Prematurity
• Feeding therapy
• Sometimes for years
• Difficult transition to solids
• Spoon and chewable solids
• Uncommon use of thickened liquids
• Common concerns
• How will my child eat?
• Will my child choke?
• Will my child dislike eating?
• How long will it take for my child to eat?

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Implications for Clinicians

• Education regarding
• Mechanics
• Potential for long-term feeding therapy
• Treatment techniques to decrease aversion
• Future research to improve outcomes with
• Improved family/parent education
• Speed of involvement of a feeding specialist
• Better nursing carry-over of therapy plans

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