Listening to Parents Voices: What Can We Learn

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Listening to Parents Voices What Can We Learn?

• Lynn Bilardello
• (Mother of Sienna Celsa)
• Susan R. Harris
• School of Rehabilitation Sciences-UBC

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INTRODUCTIONS

• Susan introduces Lynn
• Lynn introduces Susan
• Audience introductions

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Background Literature Review

• Infants born preterm or LBW
• (Bricker et al, 1988 Dewey et al, 2000 Eisert,
  1980 Harris, 1994 Heiser et al, 2000
  Hussey-Gardner et al, 1998 Pritchard et al,
  2005 Rogers et al, 1992)
• Infants with prenatal drug/alcohol exposure
• (Harris, 1994)
• Children with ADHD (Mulhern et al, 1994), autism
  (De Giacomo Fonbonne, 1998) parental
  assessment of childs cognitive and
  speech/language abilities (Johnson et al, 2004
  Oliver et al, 2002 Saudino et al, 1998)

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Background Literature Review

• Dr. Frances Page Glascoe - Vanderbilt Univ.
• 1985 - developmental referral practices of
  Tennessee physicians
• More than 40 articles or letters related to
  developmental screening
• About half relate to confirming the value of
  parental evaluation of their childrens
  developmental status

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Background Literature Review

• Contradictory Findings
• Parents medical history of 92 children age lt6
  years on wait list to receive PT or OT (who had
  been referred for neuromotor concerns)
• Parents were concerned about their childs
  development 8.2 months later than their
  childrens physicians (Ehrmann Feldman et al,
  2005)

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Evidence-based Medicine

• EBM is the integration of
• best research evidence with
• clinical practice and
• patient values
• (Sackett et al. 2000)

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Best Research Evidence

• Clinically relevant research . . . Especially
  from patient-centered clinical research into the
  accuracy and precision of diagnostic tests, the
  power of prognostic markers, and the efficacy and
  safety of therapeutic, rehabilitative and
  preventive regimens

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Clinical Expertise

• The ability to use our clinical skills and past
  experience to rapidly identify each patients
  unique health state and diagnosis, their
  individual risks and benefits of potential
  interventions, and their personal values and
  expectations

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Patient Values

• The unique preferences, concerns and expectations
  each patient (or parent) brings to a clinical
  encounter and which must be integrated into
  clinical decisions

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One Example of EBP

• Clinically relevant research, family-centered,
  aimed at accuracy precision of a diagnostic
  test
• Research question based on clinical
  experience/expertise
• Patient (family) values, i.e. family
  expectations/concerns part of the clinical
  encounter integrated into clinical decisions

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Developing the Research Question

• NICU Follow-up Program University of Washington
• Question asked to parents
• How do you think your
• baby is doing?

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Research Question

• How accurate are parents/caregivers in
  determining if their at-risk infant is developing
  on target or is delayed?

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Family-Centered Diagnosis

• Participants 31 high-risk infants from 3-9
  months of age
• Parent/Caregiver Question Harris Infant
  Neuromotor Test (HINT)
• Compared with other babies the same age, my baby
  is
• a) ahead of schedule
• b) right on target
• c) slightly delayed
• d) very delayed

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Family-Centered Diagnosis

• Compared parents level of concern on the HINT
  with scores on a norm-referenced test of infant
  motor development (Bayley)
• Sensitivity 80
• Specificity 91

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Ongoing HINT Research

• The CHILD Project - Infant Neuromotor Study
• 140 infants (82 at-risk, 58 not-at-risk)
• Assessed on the HINT, AIMS and ASQ at 4-6 months
  and 10-12 months
• Assessed on Bayley-II at 24 months and Bayley-III
  at 36 months

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Personalizing this Line of Research with One
Familys Story

• Siennas Early Story Birth to 9 1/2 Months

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Siennas Early Story Lynns Concerns

• Pregnancy history
• Birth history (birth weight, gestational age,
  concerns at birth)
• Developmental history birth to 9 1/2 months
• Concerns of other family members?
• Comparisons to older sister
• Physicians impressions (GP and pediatrician)

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Developmental Assessment 09/06

• Growth weight 60th length 10th head
  circumference 75th
• Physical features almond-shaped eyes, prominent
  eyelashes, long philtrum, thin upper lip,
  clinodactyly of 5th digits wide space between
  upper front teeth
• Gross motor skills independent sitting, pivots
  in prone, rolls supine to prone and reverse

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Developmental Assessment 09/06

• Fine motor skills Hands to midline, reached and
  obtained toys unilaterally in supine and sitting
• Muscle tone Moved easily in anti-gravity
  postures, e.g., grasped toes while in supine
  lying, sat independently with straight back no
  initial impression of generalized hypotonia
• NEXT Show DVD of assessment!

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Developmental Assessment 09/06

• INITIAL IMPRESSION
• Unusual facial features, small for age, likely
  mild motor delays based on my overall clinical
  impression
• STANDARDIZED TESTS ADMINISTERED
• Bayley-II Motor Scale and HINT

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Standardized Test Results

• Bayley-II Motor Scale PDI
• Mean SD Score
• 100 15 56 (-2.9 SD)
• Significantly delayed motor performance
• HINT Total Score
• Mean 6.61 SD 3.87 15 (2.16 SD)
• Higher HINT score greater risk

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Steps That Followed the Assessment

• Report of developmental assessment written by SH
  and sent to Lynn for distribution to Siennas
  physicians
• Follow-up tests (blood/genetic tests all WNL)
  and referral to a medical geneticist at BCCH
• No conclusive findings return at age 2 years
  (December 2007)

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Sienna Celsa in December/06
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Aunt Kellie Sienna - Feb/07
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Sienna Today at 18 Months

• Overall motor development milestones
• Speech language milestones
• Involvement in IDP play group
• Overall health and growth
• Personality plus!!!
• How is Lynn feeling today about Sienna?

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What Professionals Need to Know When a Parent is
Concerned

• Listen to parents/caregivers when they have
  concerns about their infants development!
• Parents are often right and must have their
  concerns validated by pediatric health care and
  early childhood professionals.

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Thank You for Listening!
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Questions Comments?
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