CAREGIVER CONCERNS AND EXPERIENCES IN FEEDING

1
CAREGIVER CONCERNS AND EXPERIENCES IN FEEDING
THEIR INFANTS WITH A TRACHEOSTOMY Heather
Keskeny, MA, CCC-SLP Jeannine Hoch, MA, CCC-SLP
Aaron Chidekel, MDAlfred I. duPont Hospital for
Children, Wilmington, DE

BACKGROUND
DISCUSSION
RESULTS

• Tracheostomy in infancy is associated with
  feeding and swallowing problems
  (20,16,6,8,11,14)
• Physiological changes include
• Delayed laryngeal closure and decreased superior
  excursion of the arytenoid and epiglottis (2)
• Affects coordination of suck/swallow/breathe (4,
  19)
• Environmental and medical factors that affect
  development
• Prolonged intubation (15, 20, 5)
• Prolonged use of nasogastric tube (20, 12, 5)
• Gastroesophageal reflux (10, 9, 19, 12, 17)
• Neural factors that affect degluttion
• Recurrent laryngeal nerve damage (1)
• Presence of central nervous system abnormalities
  (18, 20)
• Rosingh and Peek (16), Normal et al. (14) report
• High incidence of food aversion or refusal
• Moderate incidence of documented aspiration
• Both speculated on potential causes for
  dysphagia. Impact of the feeding specialist on
  patient outcomes was not addressed

• Arvedson and Brodsky (3)
• 35-67 post-tracheostomy referral rate in their
  hospital setting
• our study 100 post-tracheostomy referral rate,
• only 28 of this cohort was referred to speech
  pathology prior to tracheostomy
• caregivers want more information before tube
  placement.
• indicates a need for increased referrals to
  feeding specialists before tracheostomy placement
• Rosingh and Peek (16)
• reported only 3 out of 34 patients post-
  tracheostomy developed normal eating and drinking
  patterns
• our study most families (83) reported their
  children eventually achieved success and
  enjoyment with oral feeding
• increased referral to speech pathology/feeding
  specialties could play a role
• medical advances in care may have impacted
  outcomes
• may not be comparable as theirs included patients
  with known neurological impairments and we
  excluded those patients for this study.
• Chidekel (9) In infants with bronchopulmonary
  dysplasia
• gastroesophageal reflux was common
• GERD increased both respiratory symptoms and oral
  aversion
• our study results are consistent with this.
• diagnosis of GERD associated
• with GT placement
• decreased enjoyment in eating/drinking

• Among adults with tracheostomy
• Decreased comprehension of diagnosis, prognosis,
  or treatment plan (7)
• Caregivers need multiple areas of education (13)
• Nature of patient illness
• Prognosis
• Impact of treatment on patient experience
• Complications
• Expected care needs after hospitalization
• Treatment Alternatives
• Role of specialty clinicians not discussed

CONCLUSIONS TO DATE

• Among Pediatric patients with tracheostomy
• Arvedson and Brodsky (3) determined a need for
  increased referrals.
• Caregiver needs regarding feeding development and
  education have not been documented in this
  population
• No data describing
• Caregiver experiences
• Impact of tracheostomy tube on feeding
• Impact of involvement of a feeding specialist
• Outcomes
• Needs of patients and families

Figure 1. Response Differences Based on Presence
or Absence of GE Reflux
Figure 1. Graphical representation of
differences in responses to selected questions
for patients who had reflux (n12) and did not
have reflux (n6). In summary, patients with
reflux also had associated difficulty with
chewable solids and/or spoon-feeding (92),
documented aspiration (25), and gastrostomy tube
placement (58). Seventy-five percent of
patients with reflux currently enjoy eating.

• 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?

• Common histories
• Tube feedings gastrostomy tube placement was
  associated with prolonged aversion or agitation
  surrounding oral feeding
• GERD also associated with prolonged feeding
  aversion
• Prematurity
• The need for prolonged feeding therapy
• 1-3 years for our data
• Most subjects reported their child still receives
  feeding therapy
• Difficult transition to solids
• Spoon and chewable solids appeared most
  problematic according to parents
• Uncommon use of thickened liquids

Figure 2. Response Differences Based on Presence
or Absence of G Tube
GOALS
Figure 2. Graphical representation of differences
in responses to selected questions for patients
who required (n8) or did not require (n10)
gastrostomy tube placement . In summary,
patients with gastrostomy tube (G-tube) placement
also had associated difficulty with spoon-feeding
and/or chewable solids (100), documented
aspiration (25), and gastroesophageal reflux
(88). Sixty-two percent of patients with
G-tubes currently enjoy eating.

• The goals of this multi-year study identify and
  track common factors among infants requiring
  tracheostomy for chronic respiratory failure with
  respect to
• The medical history
• Incidence and management of swallowing disorders
• Caregiver concerns
• Knowledge gaps
• This study provides a family perspective on the
  pitfalls and successes of feeding among infants
  with a long term tracheostomy

IMPLICATIONS FOR CLINICIANS

• Education regarding
• Anatomy and physiology for caregivers
• Potential for long-term feeding therapy
• Treatment techniques to decrease aversion
• Future research to address
• Improved family/parent education
• Changes in oral feeding skills throughout
  development
• Impact of involvement of a feeding specialist
• Characteristics of VFSS/GERD studies and their
  correlation to medical management

• Parental Questions
• Ability/function of swallowing mechanism
• - 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.
• What was it about the trach that made it affect
  feeding?
• Development of interest in eating
• - He was intubated for so long we talked about
  aversion and if he would be interested.
• Would he have an oral aversion because he didnt
  have any bottles?
• Timeline for prediction of progress
• - How long would he need to learn?
• - When would he be able to drink thin liquids?
• Concerns were addressed through discussions with
  speech therapy (8), nursing (5), and with other
  medical staff (i.e. MDs) (1)

METHODS

• Subjects (N18)
• Parents of children with a tracheotomy tube
• No neurologic impairment
• 1-year-post tracheotomy tube placement or longer
• Recruited during a routine pulmonology clinic
  visit or short hospital stay
• Parental characteristics
• English speaking
• Caucasian (10), African American (7),
• Latino (1)
• Aged 20-44 years
• Education
• 11th grade Masters of Arts

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

REFERENCES

• 1. Abraham, SS. Babies with Tracheostomies The
  Challenge of Providing Specialized Clinical Care.
  The ASHA Leader. 2003. Retrieved September 2007
  from http//www.asha.org/about/publications/leader
  -online/archives/2003/q1/030318.htm
• 2. Abraham SS, Wolf EL. Swallowing Physiology of
  Toddlers with Long-Term Tracheostomies A
  Preliminary Study. Dysphagia. 2000 15 202-212.
• 3. Arvedson JC and Brodsky L. Pediatric
  tracheostomy Referrals to Speech-Language
  Pathology in a Childrens Hospital. International
  Journal of Pediatric Otorhinolaryngology. 1992
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• 4. Arvedson JC ,Brodsky L, Reigstad D. Clinical
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• 5. Arvedson JC ,Brodsky L, Reigstad D. Management
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• 6. Arvedson JC, Lefton-Greif MA. Radiologic
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• 9. Chidekel AS, Rosen CL, Bazzy AR
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• 12. Morris SE, Klein, MD. Factors That Limit
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LIMITATIONS

• Some parent reports were not accurate
• Lacking detail in recounting recommendations
• Parental report not consistent with hospital
  records
• Evaluation tools were limited
• No FEES available for evaluation

• Milder neurological impairments may have affected
  outcome
• as most patients followed by early intervention
  or school based therapy for delays.
• Data was incomplete
• some subjects were not yet decannulated
• most were still receiving feeding therapy
• VFSS results need to be more closely examined

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