PARENTS’ AND CAREGIVERS’ PERCEPTIONS OF THEIR CHILDREN‘S DEVELOPMENT

Susan R. Harris

During the past decade, there has been growing emphasis on providing family- centred services for children with developmental disabilities, as well as for infants at risk for disability. Increasingly, parents and caregivers have been involved in making decisions about the aims of both assessment and intervention (Dunst 1985, Bailey et al. 1986).

Because professionals have traditionally believed that parents of children with special needs tend to overestimate their child’s abilities, we have preferred to rely on objective measures, such as norm- referenced, standardized tests, to deter- mine whether a child’s performance warrants early intervention services

0 of (Sexton ef al. 1990). However, recent ? research suggests that parents and care-

givers can provide very reasonable and reliable estimates of their child’s 2 development .

In a study of 157 parent-child dyads is

, in which the children ranged in age from .- : six to 77 months and were receiving

typical paediatric care, Glascoe (1991) $ compared the parents’ concerns about the - children’s speech-language development

3 $ with results of standardized develop-

9 mental and articulation screening tests 9 administered by doctoral students in 4 special education or psychology. The

sensitivity of the parents’ judgement 918 (based on the percentage of children with

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speech-language delays whose parents were concerned) was 72 per cent. For children who tested within normal limits on the screening tests, 83 per cent had parents who had no speech-language concerns; this is the specificity of parental judgements.

An earlier study by Glascoe and col- leagues (1989) of 100 families of young children (mean age 37 months) seeking paediatric care revealed similar findings. Parental concerns across a variety of developmental categories were compared with findings from a standardized develop- mental screening test. The sensitivity of the parents’ perceptions was 80 per cent and the specificity was 94 per cent.

Bartlett et al. (1992) compared the validity of maternal estimates of the motor development of their infants (aged between one and IS months) and esti- mates made by physical therapists using versions of the same test: the Alberta Infant Motor Scale (AIMS) (Piper ef al. 1992). They reported perfect agreement (100 per cent sensitivity and specificity) for 30 term infants, but lower values for 24 low-birthweight preterm infants (37.5 per cent and 93-7 per cent, respectively). The authors concluded that mothers of preterm infants ‘may not be as able to identify delays in their infants’ develop- ment’ as mothers of term infants (Bartlett et al. 1992).

Due to the relatively limited research literature on parents’ and caregivers’ perceptions of their child’s developmental status, particularly with regard to high- risk infants, the present pilot study was designed to address the following question: are caregivers of young high- risk infants reliable in their estimation of their infants’ overall development?

Method

Our sample comprised 31 infants between the ages of three and nine months (age corrected for preterm birth if c37 weeks gestation) who were recruited from three different high-risk follow-up pro- grammes: Sunny Hill Health Centre for Children, B.C. Children’s Hospital (both in Vancouver, British Columbia), and Meriter/Madison General Hospital in Madison, M’I. There were 15 girls and 16 boys; 26 were singletons and five were from multiple births (twins or triplets). 53 per cent were first-born children. 47 per cent were low-birthweight infants ( c 2500g); of these, four were small for gestational age. The sample was divided almost evenly between preterm (N = 16) and term ( N = 14) infants; one infant’s gestation at birth was unknown (but was presumably term, based on birthweight). Almost two-thirds of the infants were Caucasian (62 per cent), with 13 per cent Native Indian and 25 per cent of mixed ethnicity, including two or more of the following races: Asian, Black, Caucasian, East Indian, Hispanic and Native Indian.

The infants were quite heterogeneous with regard to risk factors. 20 infants had been exposed to drugs and/or alcohol in utero; one of those infants had also tested Hlv-positive and two others showed facial features consistent with fetal alcohol syndrome (FAS). One of the preterm infants was subsequently diagnosed as failing to thrive, and another exhibited symptoms of transient myasthenia gravis. The infant born most preterm, at 24 weeks of gestation, clearly had early signs of cerebral palsy (probably spastic quadriplegia).

Four infants were subsequently dropped from analysis for this study because of lack of data about caregiver concern (two had been assessed while they were still

SUBJECTS A N D SITES

hospital inpatients and caregivers were not present; two other parents were unsure about attempting to rate their infant’s development).

ASSESSMENT IKSTRUMESTS A N D PRO- CEDURES All infants were assessed by the author, a paediatric physical therapist with 15 years experience of assessing high-risk infants. The first test administered was the Bayley Scales of Infant Development (Bayley 1969). Based on normative data collected on 1262 infants, the Bayley Scales have been used in a number of high-risk infant follow-up studies during the past two decades (Aylward et a/. 1989). Considered by many to be the ‘gold standard’ for infant cognitive and motor assessment, the Bayley Scales cover an age-range of two to 30 months and include both mental and motor scales, as well as an infant behaviour record. Only the mental and motor s a l e s were administered in the current study. A revised version of the Bayley Scales with updated norms, the Bayley-I1 (Bayley 1993), was published approximately one year after these pilot data were collected. Fortunately, there is strong concurrent validity between the Bayley and the Bayley-I1 (Bayley 1993).

The mental scale includes items that assess sensory-perceptual acuity, prob- lem-solving ability, language and memory, whereas the motor scale consists primarily of gross motor items as well as a few fine motor items. Raw scores on each scale are converted to developmental indices based on the infant’s chronological or adjusted age (corrected for preterm birth). Both the Mental Developmental Index (MDI) and the Psychomotor Developmental Index (PIX) have a mean of 100 and a standard deviation of 16. Therefore an MDl or PDI of 84 or above is considered be within normal limits.

Before administration of the Bayley, the infants’ caregivers were asked to answer a series of four questions from thc development edition of the Harris Infant Neuromotor Test (HINT), a new screening tool being developed to assess early signs or motor or cognitive disability (Harris 1991). The first question was designed to provide the caregivers’ estimate of the babies’ tone (‘How does your baby feel

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TAI~LE I Sensithit,, 5pecificity and pocitite and negative predictire d u e s of parental perceptions with the B a l k y mental scale

Parenls ’ Bayley Bayley perwprions iWDI <84’ MDI 284

Developmentally

Developmentally delayed 3(a) 3(b)

appropriatc 2(c) I8(d)

-6ovo a Scnsitivity - - - a t c S d 18

b t d 21 S p e c i f m y - - - --85.74’0

3 a + b 6 Positive predictice value = -a Y __ -- 50%

d 18 Segative predictive value? c + d - = 20-’90%

*MDI = Mental Developmental Index.

TABLE I Sensitivit!, specificity and positive and negative predictive values of parental perceptions with the Bajley motor scale

Parenfs ’ Bayley Buy/ey percepitons PnI <a48 PDI 2 8 4

Developmentally

Developmentally delayed 4(a) 2(b)

appropriatc t(c.1 m d )

a 4 a r c 5

b L d 22-- a -

a t t i - 7 7

Sensitivity-- --- - 80%

Specificity= A: 90.9%

‘ -66.7% Positivc predictive value - -

Negative predictive value - - = .- = 9sv0 d 20 c + d 21

~ ~~

*PI11 - Psychomotor Developmental Index.

when you handle or carry her?’). The second question was aimed at the care- givers’ assessment of their overall feelings about how their babies were doing in general. The third question was designed to assess the caregiver’s estimate of their infants’ overall development and was used for comparative analysis with the Bayley scores in this pilot study: ‘Compared with other babies the same age, my baby is (a) ahead of schedule; (b) right on target (at

age level); (c) slightly delayed; (d) very delayed’. Parents of preterm infants were advised to make comparisons based on their infants’ corrected age. The fourth question asked about any specific con- cerns that the parents or caregivers had about their infants.

DATA A N A I YSIS To determine whether or not caregivers were reliable in assessing their infants’ development, sensitivity, specificity, positive and negative predictive values of each caregiver’s estimate of the infant’s overall development were assessed by comparing their answer to the third item of the HINT parent/caregiver question- naire with the Bayley MDI and P D I . Because the question to the caregivers did not specify a particular developmental domain (i.e. mental or motor), each outcome was assessed independently. The four caregiver choices on the third item were dichotomized into two descriptive categories of ‘normal’ (a or b) or ‘delayed’ (c or d) development. The Bayley scores were divided into normal ( X ~ D I or PIX 184) and delayed (MDI or PDI <84), based on using a cut-off of one standard deviation below the mean.

Results Sensitivity, specificity and positive and negative predictive values for the care- givers’ ratings and the Bayley MDl are presented in Table 1. Comparable statistics for the Bayley PDI are presented in Table 11. Because there was one very young subject (aged 2 months 28 days) for whom the MDI could not be completed, there were only 26 subjects included in the analyses presented in Table 1.

Discussion Results of this study involving very young high-risk infants (three to nine months of age) suggest that caregivers are quite good at identifying development which is on schedule according to results of pro- fessionally administered standardized tests (specificity of 85.7 per cent and 90.9 per cent for Bayley MDI and PDI, respectively). However, the ability to identify delays accurately, when such delays exist, was somewhat poorer (sensitivity of 60 per cent and 80 per cent

for Bayley MDI and PIII, respectively). The sensitivity of the caregiver

questionnaire item from the HINT was nonetheless considerably higher than the sensitivity of the maternal version of the AlhlS when used with high-risk infants (37 .5 per cent), as reported by Bartlett and colleagues (l992), alt hough the specificity was slighly lower than the 93.7 per cent obtained with the AIMS.

Sensitivity and specificity are of little value unless the positive and negative predictive values of a test are known (Carran and Scott 1992). The positive and negative predictive values of the care- givers’ estimates when compared with results from the Bayley MDI were 50 per cent and 90 per cent, respectively. For the Bayley mi, the comparable values were 66.7 per cent and 95 per cent. According to Carran and Scott (1992). all of these indicators should approach a value of 0.80 for a test to be considered worth- while. With the exception of the positive predictive value (66.7 per cent), each of the other three indicators was 2 8 0 per cent for the comparison of the caregivers’ estimates with the Bayley PDI as the outcome criterion. When using the Bayley MDI as the gold standard, two of the four indicators were z 80 per cent (specificity and negative predictive value).

The most obvious limitation of this study is its relatively small sample size. However, the ethnic diversity, geographic heterogeneity and variety of different risk characteristics represented by these subjects all serve to enhance the external validity of the results.

A possible expectation bias was intro- duced by having the caregivers respond verbally to the questions on the HINT before the author’s administration of thc standardized tests. The caregivers’ re- sponses may have biased the author’s administration and scoring of the Bayley Scales, although every effort was made to administer and score the test in the standardized manner described in the Bayley manual. This bias was considered less problematic than having the objective tests administered first, because it would have been extremely difficult for the author to have refrained from comment- ing on the child’s performance, thus biasing the caregivers’ responses to the

HINT questions. A final concern is the use of the earlier

edition of the Bayley (1969) as the gold standard, because it was the only version available when this pilot study was con- ducted. Recent research using the original Bayley Scales on samples of term and preterm infants (Campbell er al. 1986, Washington and Harris 1989) suggested that the means for the developmental indices were as high as 107 to 110, although the standard deviation remained relatively constant (15 or 16 points). However, because this test was recently described as ‘the best measure available to test infant development’ (Aylward 1991), and because it had been used in a number of different high-risk infant follow-up studies, it was chosen for this study as well. The Bayley-I1 are currently being used as the gold standard in a larger study examining the reliability and validity of the HI^.

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Conclusion As with previous findings involving older groups of children (Glascoe ef al. 1989, Glascoe 1991). results of this study support the accuracy of caregivers’ estimates of their infants’ overall development, thus suggesting that professionals should pay close attention to caregivers’ concerns about their children’s development. As Glascoe and colleagues ( 1 989) concluded after documenting a high degree of parental concurrence with professional estimates based on a standardized developmental screening test: ‘If our findings are confirmed and extended, the practice of routinely eliciting parental concerns about development might be supported as a simple, brief approach to prescreening child dcveloprnent’. Such confirmation is suggested by the present pilot study and, combined with the increased emphasis on family-centred care, further underscores the need for implementing such prescreening practices. Accepted for publication 2nd March 1994.

Acknowledgements This study was supported by a Mary Switzer Distinguished Research Fellowship awarded to Dr Harris by the National Institute of Disability and Rehabilitation Research of the US Department of Education. The author is grateful to the families who participated in this project and to Dr James Helm of Wake Medical Center,, Raleigh, NC, for suggestions regarding relevant literature. 921

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Author k Appointment T325-221 I Wesbrook Mall, University of British Susan R . Harris, School of Rehabilitation Sciences,

SUMMARY Parents’ or caregivers’ perceptions of their infants’ overall development may serve as a reliable screen for clinical decisions regarding the need for further assessment. To determine whether caregivers were accurate in estimating infant development, 27 caregivers were asked to answer four questions about their infants before standardized assessment by a paediatric physical therapist. Their responses were compared with the professional’s ratings on the Bayley Scales of Infant Development. Specificity of the parents’ estimate with the Bayley Mental Scale was 85 -9 per cent and sensitivity 60 per cent; using the Bayley Motor Scale as the outcome criterion. specificity reached 90.9 per cent and sensitivity 80 per cent. Results of this pilot study support the accuracy of caregiver estimates of their infants’ overall development, thus suggesting that professionals should pay close attention to caregivers’ concerns about their children’s development.

R ESU bl Perceptions du developpetvent des en fonts par les parents ou fatnilles d ‘accueil Les perceptions du developpement global des nourrissons par les parents ou familles d’accueil peuvent servir d’haluation fiable pour les decisions cliniques concernant le besoin d’haluations ulterieures. Pour determiner si les familles sont fiables dans leur estimation du developpement du nourrisson, quatre questions furent posees a 27 personnes concernant I’enfant a leur charge, avant une evaluation standardisee par un kinesitherapeute specialise en pediatrie. Les reponses furent comparees aux evaluations de professionnels aux echelles de developpment de Bayley. La specificite de I’estimation des parents fur de 85.9 pour cent et la sensibilite de 60 pour cent; utilisant I’echelle motrice de Bayley comme critere desortie. la specificite atteignait 90.9 pour cent et la sensibilite 80 pour cent. L’ige du nourrisson eut quelqu’influence sur la precision des estimations donnees par les familles lorsque I’echelle motrice de Bayley etait utilisee comme critere de sortie, les nourrissons correctement evalucs i tant legerement plus l g e s que les autres.

ZUSAMMENFASSUNG Einscharzung von Eltern und Betreuern zur Enrwicklung ihrer Kinder Die Einschatzung von Eltern und Betreuern zur allgemeinen Entwicklung ihrer Kinder kann als verlalllicher Anhaltspunkt fur klinische Entscheidungen hinsichtlich der Notwendigkeit weiterer Untersuchungen dienen. Urn festzustellen, ob Betreuer die kindliche Entwicklung richtig einschatzen, wurden 27 Hetreuer Rebeten. vier Fragen zu ihren Kindern 7.u beantworten, bevor eine standardisierte Beurteilung durch einen padiatrischen Physiothcrapeutcn durchgefuhrt wurde. lhre Antworten wurden mit der fachmannischen Einstufung auf den Bayley Scales of Infant Development verglichen. Die SpeLifitat der elterlichen Einschatzung betrug 85.9 Prozent und die Sensitivitat 60 Prozent; legte

- man die Bayley Motor Scale als Kriterium fur den Outcome zugrunde, so erreichte die Spezifitat 90.9 Prozent und die Sensitivitat 80 Prozent. Wenn die Bayley .Motor Scale als Kriterium fur den Outcome angenommen wurde, stimmte die Genauigkeit der Retreuer nicht ganz beim Alter der Kinder: korrekt eingestufte Kinder waren etwas alter.

Columbia, Vancouver, RC. V6T 2R5. Canada.

RESUMEN Percepcidn del desarrollo de sus niilos por parte de padres y cuidadores La percepcion de 10s padres y cuidadores del desarrollo en conjunto de sus nirlos, puede servir como pantalla fiable para las decisiones clinicas a tomar respecto a la necesidad de una evaluacion ulterior. Para determinar si 10s cuidadores eran precisos en la estimacion del desarollo del nirlo, se pidio a 27 cuidadores que contestaran cuatro preguntas respecto a sus nirlos, antes de una evaluacion estandar realizada por u n fisioterapeuta pediatrico. Sus respuestas fueron comparadas a las de otros profesionales en la Bayley Scales of Infant Development. La especificidad de la estimacion paterna era del 85.9 por ciento y la sensibilidad del 60 por ciento; utilizando la Bayley Motor Scale como criterio. la especificidad alcanzo el 90,9 por ciento y la sensibilidad el 80 por ciento. La edad del nillo tenia cierto efecto sobre la precision del cuidador, cuando se usaba la Bayley Motor Scale como criterio. Los nifios correctamente identificados eran ligeramente mayores.

References Aylward, G. P. (1991) ‘A physician’s primer of

developmental and psychologic test instruments.’ In Gottlieb. &I. I.., Williams, J . E. (Eds.) Developmental-Behavioral Disorders: Selected Topics. New York: Plenum Press.

- Pfeiffer, S. I., Wright, A., Verhulst, S. J . (1989) ‘Outcome studies of low birth weight infants published in the last decade: a metaanalysis.’ Journal of Pediatrics, 115,

Bailey, D. B., Simeonsson. R. J., Winton, P. J.. Huntington. G.. Comfort. M., Isbell, P.. O’Donnell, K.. Helm, J. (1986) ‘Family-focused

515-520.

intervention: a functional model for planning, implementing, and evaluating individualized family services in early intervention.’ Journal of the Division of Early Childhood, 10, 156-171.

Bartlett. D., Piper, M., Magill-Evans. J., Warren, S. (1992) ‘Validity of mothers’ assessment of infant motor development.’ Developmental Medicine and Child Neurology. Suppl. 66, 6. (Abslracr.)

Bayley, N. (1969) Bayley Scales of Infant Develop- ment. New York: Psychological Corporation.

- (1993) Bayley Scales o j Infant Development, 2nd Edn. San Antonio, TX: Psychological Corporation.

Campbell, S. K . , Siegel, E.. Parr , C. A, , Ramey, C. T. (IY86) ‘Evidence of the need to renorm the Bayley Scales of Infant Development based on the performance of a population-based sample of 12-month-old infants.’ Topics in Early Childhood Speciol Education, 6 , 83-96.

(’arran, I). T.. Scott. K . <;. (1992) ‘Risk assessment i n preschool children: research implications for the earls identification of educational handicap.’ %prcs i n Eudy Ckrldhood Special Educurron. 12,

Dunst, C. (1985) ‘Kethinking early intervention.’ A nalys t~ and Infervention i n Developtnenfal Disabilitius, 5, 165-201.

Glascoe, F. P. (1991) ‘Can clinical judgmeni detect children with specch-language problems?’ Pediatrirs, 87, 3 17-322.

Altenieicr. W. A., Macl.ean. \\’. E. (1989) ‘The importance of parents’ concerns about their child’> development .’ .4nierican Jotrrnal 01

196-21 I .

-

Diseases o/ Children, 143, 955-958. Harris. S. R. (1991) ‘Development of an infant

neuromotor assessment tool .’ Mury E. Swit;er Reseurch Fello uship Final Report. Was hi ngt on, DC: National Institute on Disability and Rehabilitation Research.

Piper, M. C., Pinnell, 1.. E., Darrah, J.. Maguire, T., Byrne. P. J . (1992) ‘Construction and validation of the Alberta Infant %lotor Scale (AIMS).’ Canadian Journal of Public Healrh. 83 (SUPPI.), S46-SSO.

Sexton, D., Thompson, B., Perez, J., Rheams, T. (1990) ‘Maternal versus professional estimates of developmental status of young children with handicaps: an ecological approach.’ Topics in Eurly Childhood Sperial Education. 10, 80-95.

b’ashington. K . A., Harris, S. R. (1989) ‘Mental and motor performance of low birthweight infants with norrlial developmental outcomes.’ Pediatric Physicul Therupy, 1, 159-165.

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