Listening to Parents’ Voices: Listening to Parents’ Voices: What Can We Learn?What Can We Learn?

Lynn Bilardello

(Mother of Sienna & Celsa)

&

Susan R. Harris

School of Rehabilitation Sciences-UBC

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INTRODUCTIONSINTRODUCTIONS

• Susan introduces Lynn

• Lynn introduces Susan

• Audience introductions

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Background: Literature ReviewBackground: Literature Review

• Infants born preterm or LBW 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 exposureInfants with prenatal drug/alcohol exposure(Harris, 1994)

• Children with ADHD Children with ADHD (Mulhern et al, 1994), autism autism (De

Giacomo & Fonbonne, 1998); parental assessment of child’s parental assessment of child’s cognitive and speech/language abilities cognitive and speech/language abilities (Johnson et al, 2004; Oliver et al, 2002; Saudino et al, 1998)

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Background: Literature ReviewBackground: Literature Review

Dr. Frances Page Glascoe - Vanderbilt Univ.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 children’s developmental status

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Background: Literature ReviewBackground: Literature Review

Contradictory FindingsContradictory Findings::

• Parents’ medical history of 92 children age Parents’ medical history of 92 children age <<6 6 years on wait list to receive PT or OT (who had years on wait list to receive PT or OT (who had been referred for neuromotor concerns)been referred for neuromotor concerns)

• Parents were concerned about their child’s Parents were concerned about their child’s development 8.2 months development 8.2 months laterlater than their than their children’s physicians children’s physicians (Ehrmann Feldman et al, 2005)(Ehrmann Feldman et al, 2005)

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Evidence-based MedicineEvidence-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 EvidenceBest 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 ExpertiseClinical Expertise

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

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Patient ValuesPatient 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 EBPOne 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 QuestionDeveloping the Research Question

NICU Follow-up Program: University of Washington

Question asked to parents:

““How do How do youyou think your think your

baby is doing?”baby is doing?”

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Research QuestionResearch QuestionHow accurate are parents/caregivers in

determining if their at-risk infant is developing on target or is delayed?

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Family-Centered DiagnosisFamily-Centered Diagnosis

Participants: 31 high-risk infants from 3-9 months of ageParent/Caregiver Question: Harris Infant Neuromotor

Test (HINT)Compared with other babies the same age, my baby is:

a) ahead of scheduleb) right on targetc) slightly delayedd) very delayed

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Family-Centered DiagnosisFamily-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 ResearchOngoing HINT Research

The CHILD Project - Infant Neuromotor StudyThe 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 Personalizing this Line of Research with One Family’s Storywith One Family’s Story

Sienna’s Early Story: Birth to 9 1/2 Months

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Sienna’s Early Story Sienna’s Early Story & Lynn’s Concerns& Lynn’s 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: 09/06Developmental 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: 09/06Developmental 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:NEXT: Show DVD of assessment!Show DVD of assessment!

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Developmental Assessment: 09/06Developmental 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 ResultsStandardized Test Results

Bayley-II Motor Scale: PDIBayley-II Motor Scale: PDIMean SD Score100 15 56 (-2.9 SD)**Significantly delayed motor performance

HINT Total ScoreHINT Total ScoreMean: 6.61 SD: 3.87 15 (+2.16 SD)**Higher HINT score = greater risk

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Steps That Followed the Steps That Followed the AssessmentAssessment

• Report of developmental assessment written by SH and sent to Lynn for distribution to Sienna’s 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/06Sienna & Celsa in December/06

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Aunt Kellie & Sienna - Feb/07Aunt Kellie & Sienna - Feb/07

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Sienna Today at 18 MonthsSienna 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 What Professionals Need to Know When a Parent is ConcernedWhen 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!Thank You for Listening!

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Questions & Comments?Questions & Comments?

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