err Long-term Family Outcomes for Children With Very Low Birth Weights H. Gerry Taylor, PhD; Nancy Klein, PhD; Nori M. Minich, BS; Objective: To examine long-term outcomes in fami lies of children with very low birth weights (<1500 g) in relation to the extent of low birth weight and neona- tal medical risk. Design: Concurrenticohort prospective study Settings Regional follow-up program. Participants: Families of 60 children of school age with birth weights less than 750 g, 55 with birth weights be- ‘oven 750 and 1499 g, and 49 normal birth weight full- term controls, Main Outeome Measures: Parent ratings of psycho- logical distress, family function, and child-related stress. Results: Families with children with birth weights less than 750 g experienced greater stress than did families ‘ofcontrols (born at full erm), and families who were so- Maureen Hack, MB, ChB clodemographically advantaged experienced greater stress than did those who were disadvantaged. Higher neona- tal medical risk also predicted « more negative impact on the family, but only in advantaged families. Regres- sion analyses suggested that adverse family outcomes were mediated by ongoing problems in child functioning. Conelusionss Families of children with birth weights less than 750 g experience more long-term adversity than fani- lies of full-term children, Family sequelae are also pres- ent for children with very low birth weight at high neo- natal medical risk, Ongoing child health and behavior problems may be the major source of these sequelae, and Sociodemographic status is an important consideration {in identifying family adversity. Although many families appear unallected, results support the need to monitor family outcomes and develop interventions for both the child and family “Arch Pediatr Adolese Med. 2001;155:155-161 REVIOUS research has demonstrated that fani- liesof infantsand young, children with very low birth weights (VLBW) Ishing after the neonatal period, persists into early childhood.**° Howe! aware of no published reports of family ‘outcomes for older children with VLBW. Itis unclear if family sequelae are intran- From the Department of Pediatrics, Case Westers Reserve Unversity, Rainbow (<1500 g) experience more distress and burden than do families of children born at full erm ata normal weight. We know litle, however, about the later adjustment of families of children with VLBW. Our study is among the first to document that family sequelae extend into the school-age yearsand to investigate predictors ofthese .quelae, The findingsalso clarify sources of family adversity and indicateaneed for family intervention. The birth of an infant with VLBW (<1500 g) is a stressful event for many families, especially in cases involving ex- treme prematurity, neonatal medical com- plications, and long hospitalizations."* Par- ents of infants and young children with VLBW report more symploms of depres- sion and experience greater child-related sigent or dissipate asthe child grows older. Even if family problems related to early separation from the child or to stress as- sociated with neonatal complications re- solve with time, children with VLBW are atrisk fora variety of problems in health, behavior, and development '*"* Research on children with VLBW and on children who have other chronic conditions indi- cates that child health and developmental problems have adverse effects on fatni- Ties.'518527 Because these problems con- tinue to be present in children with VLBW during the school-age years," one would ex- pect persistent family sequelae. The primary goal of this study was to test the hypothests that family outcomes would be more negative for children of school age with VLBW than for those born Babies and Children's Hospital tress than do mothers of full-term chil of University Hospitals of (Cleveland (Drs Taylor and Hack, and Ms Minich); andthe Department of Education ‘Cleveland State University (Dr Klein), Cleveland, Ohio, also adversely affected.!°" VLBW on the (©2001 American Med jamanetvrork.com/ on 08/21/2022. dren.*” Early parenting behaviors and al- tachment ofthe infant to the caretaker are The negative impact of children with, families, although dimmin- at full erm ata normal weight. In view of the greater health, developmental, and family morbidity associated with more extreme degrees of preterm birthand ne natal medical risk, we anticipated that fam- lly sequelae would be more marked for Association, All rights reserved.PATIENTS AND METHODS POPULATION ‘he sample consisted of children and parents patpa- tng nan ongoing longtlina! study ofthe consequences elbirh weighs stn 50 inoer chen" The po tlipants were fist recruited heath chlren hada ean teal years The sample included 08 cidren with th eight ess than 750g 5 ihr weighs Breen 730 Ind Hoo gad 61 controls bor tall term, The group that had bh weightless than 730 g constuted 99% a the 73 surviving children bor nh weight ange who tree rated at nconatlnensvecare ats nrgion Vo Ohio between july 1, 1982, and December 31 aso. ‘The 2 comparson grops were tonne by selecting smaches or ac chil tha ith weight es than 750g The Birth weight match in the 750 to 1409 group was thennent- born chin thisbirt weight rangedeiverd at the same hospital and of he same ex and ace The fall termmatch wasa randomly cectedchssmutc of thesame age vin 3 months, and ofthe same sex and race. Fall the to reer comparison chldren for some ofthe el dren with birth weight less than 750g was the result of ‘eludes in matching out-of-town prints, the mised appolniments: Cotparson of the 3 orginal troupe dd no reveal ferences in ae, ex, o ocode- vege factor ‘The amily asessments considered inthis report were obtained ata second assessment conducted when the cil den hada mean age of 11 years We were uml to fol iow upwih 30of tec orignlumiles duc tomoves out ef the elon (¥ cases, nal to locate fie (7 exes), tnd denteest or lack of elow through by fames CS fue), Material education and children's cogotve al iywerelowerfor those who droped out of testo than for those who remained inthe ty, bu these 2 group a litem dd not der in gestaunal age, neonatal compl Caton of ates of neatosesory disorders Table presents neonatal and sociodemographic char scterisiestor the groupe of tldren eam age yas). Neonatal medial satus was asesed in terms of tesa indvidan compliationsandofigh overall neonatal ik tsdelined bya score greater than onthe Neonatal isk Index Measures of sociodemographic status included the Hollingshead Four Factor index" andthe Social Disad- ‘antag Index (SDD) The SDI hasbeen previously val dated tsa predicor of chld outcomes and is defined s.8 composite of maternal education (1) ‘As expected, the less than 750 g group had lower sean birthweight and gestational age longer hosptaliza tions, and higher rates of individual neonatal compli {ons and overall neonatal medical isk than the 7500 1499 group. Proporinally, more children in theless than 730 group had high neonatal medical risk than those inthe dt 40g group. The groups didnot dillerin age, sex. race, or the Hollingshead Four Factor Indes, but did it ferinmaternal educational satus and nthe proportion of disadvantaged fares. Fifteen children had neurosensony disorders, inlud- ing cerebral pay o a visual or sensorineural hearing im parent Visual impairment was defined as corrected act Kryimat least | eye of less than 20/100. These disorders were foundin 11 children from the less than 750g group (4 with cerebral paley, 4 with visual impalrment,& with senso peural hearing impairment, and 1 with cerebral palsy and “oulangiment an romthe 73010190 group With cerebral palsy, twith sensorineural hearing impair tment, and I with cerebral palsy and hearing impatmend) ASSESSMENT PROCEDURES Although child testing was comprehensive, ony results from parent interviews and parent-based child behavior ratings ‘were considered in this study." Respondntsincluded moth- ers (86.6%), fathers (49%), grandparents (6.7%),and fos. ter parents (1.8%). Institutional review board approval and {informed consent from families was obtained prior to par Licipation. amily outcomes were assessed by administering ev- cralsel-report scales to parents, The Brief Symptom In- ventory (BSI) was given to assess parent psychiatric symp- toms; the Competence and Attachment scales of the children with bieth weights less than 750 g than for those ‘with bith weights between 750 and 1499 g°"""!" Wealso ‘expected more adverse outcomes for families with chil 2) on the Family Bur den interview. Measures used tases the childs fanctiona health in- cluded the Child Behavior Chellis." parencbased ating of child behavior problems, and the Vineland Adaptive Be- havior Scales,” parent interview procedure for assesing be hhavioral development and adaptive functioning. Chien with functional health problems were those with a Child Behav for Checklist Total Problem score grater than 63, Vine~ land Adaptive Behavior Composit scoreless than 70, and/or a neurosensory disorder as defined above DATA ANALYSIS. Given out interest in relating predictor variables o both Continous and dichotomous measures of outcome, dala ‘malate was condted using Merachlcl multiple regres Son, Linear regression was sed in analyse of continous ctcomes,andfogistc regression inal of the dicho. ‘mous mesures, Birth weight group was defined in the mod- cle dary variables representing contrasts between each ofthe VEBW groups andthe ulin group. children with ‘VLBW were lasted as tlw or high neonatal risk based on their scoreson the Neonatal Rsk Index (0-3-low risk, $Teehigh risk). Sociodemographic status was claselfied as advantaged or disadvantaged Inthe rst series of analyses, we compared models that included the 2 birth weight group contaste and socode- ‘mographi satus with modelsthat included thse actors pis thelr interactions Ifthe infraction terms did not add the prediction of a given (aly outcome, modes without the Interaction terme were wed to tet the elles obit weight and sociodemographic stats, Only data fr the 2 VLBW froupe combined were considered in the second series of faljses These analyses paraleled those ast described with iow vs high neonatal medical risk substuted for the birth weight group contrasts. The third series of analyses exam- Ined the possiblity tha concurent child health problems tediated any relationships of family outcomes with bith tweight or neonatal medial sl As required in ets of me diating relationships" we frst ested assoclations between thelaterfactorsanthe presence of child problems, We then carried out hierarchical regressions to determine ifthe child problems lacor was related to fay outcomes, andi r= Entionshipe of exhe birth weight or neonatal medical risk to fal outcomes were reduced when this actor wa in- cluded asa predictor. Thea level forsigficance was P05 forall analyses ‘continuous measures of family outcome. Differences be- ‘oven the less than 750 g group and full-term controls ‘were found for the Parenting Stress Index Competence ‘and Attachment scales. Both scales indicated more parent ing difficulties in the less than 750 g group. Parents of the children who were less than 750 g also reported @ more negative impact of the child's health status on the family on the IOF-G than did parents of full-term chil- dren, Sociodemographic status was related to 3of the mea- sures, In all instances, outcomes were poorer for disad- vantaged families than for advantaged families. Examination of results from the Family Burden Interview revealed that 36 parents (619%) of the less than 750 g group compared with 27 parents (51%) of the 750 to 1499 g group and 14 (32%) of the full-term ‘group endorsed child-related stress (":=8.68, P<05) Results from logistic analysis showed a higher rate of (©2001 American Med jamanetvrork.com/ on 08/21/2022. stress in the less than 750 g group than in the full-term group (odds ratio [OR] =3.35; confidence interval [CI], 1.47-7.63; P=.004), Further analysis of group differences in the Family Burden Interview, adjusting for the elfects of sociode- mographic status, indicated that differences between the less than 750 g group and full-term group were related to parent reports of developmental/earning and emo- Lonal/bchavioral problems, but not to parent reports of ‘medical orschoo! problems. Individual concerns for which higher rates of sess were reported in the less than 750 group pertained to the need for child supervision, ac- ceptance of the child by peers and the child's self esteem, the effects of child problems on family routines, and the child's future. According to the eriteria listed eatlier, 30 parents (5196) from the less than 750 g group had at least 1 ad- Association, All rights reserved.‘Table 1. Sociodemographic and Neonatal Char lorisics of the Sample characte ‘rea 9 (n= 00) Fal orm ean ($0) age at assent Tod) 111013) 112 (12) Mean (S0)Hoingshed Fou Factor Index score 3096 (1295), 3310 1418), 38.06 (1348), Mean ($0) br wight, of 556 (682) 11732 2173) Mean (S0) gestational ag, wht 257 (18) 2a (24) Mean (80) length of reoatal hospitalization. 1302758) 611 600) Famal sox 4168) 28 69) 33,67) ace White 23.65) 28,61) 20,59) ‘Aiea American 21188) 219) zoiaty Sociodemographic dsdvartaget 18/30) 23161) 14(20) Inevidl aonatal complications ‘Aonormal arab utasoune 18,80) 10(20) Septicamiat 29(48) 12122) Jaudie of prematurity 1525) 21 (9) onan of prematurity 003) Nowotaing atrocalis 519) Chronic ung disease ein) igh neonatal medial isk onal Rsk Index >} 10(20) Data ar gen as number (petcntge nts ere dated, Abnormal cra lasound i dened as grade IU navel bemorrtage or venrcur data jurle, as birubn lees of 1a higher and chronic lung dsease, a ver dependence at 36 vee’ coreted age. Higher scores 00 the Hollngstea ou Facto Indeetet Ngersacodemograpie tus Soctdemegrapnic disadvantage va defined by a scare greater than Ton fhe Soll Disaoranage index Fllpsesincate not apleabe 4 Sigifeant group atrence Pt EShoieant group aiterence P06 ‘Table 2. Summary of Findings From Comparisons of Birth Welght Groups on Continuous Measures of Family Outcome” Toa garoup 730-1489 oreup Ful-Term Group Regression Rosi, Outcome Measure Fovia=42) o1s(a=16) Aovia=27) ois(a=28) hovn=so) orsa=sa) emees t Bet Symptom ventory General 48.17 (708) $7:11(076) 5078 (963) 6333 (758) $0.46 1008) 6070(T780) SDS os Sty index Parenting Stress index CompatnceT sare 2096 6.48) 3044460) 9019499) 2038 588) 2650(480) 3021(652) <7S0quetem 2058 tachment T core 1250(362) 1505(273) 1R07(88) 1352 (815) 1137(289) 1307(845) >” “Asoobscrved in several past studies," negative fam- ily outcomes were related to the presence of concurrent problems in the child's functional health status. Consis- (©2001 American Med jamanetvrork.com/ on 08/21/2022. tent with previous reports of ehild outcomes in this sample,°!*2* the less than 750 g group had much higher rates of functional health problems than the full-term con- trols. The possibility thatthe presence of child health prob- lems mediated relationships of birth weight and neona- tal medical risk with the family outcomes was suggested by 2 findings. First, families of children with concur- rent health problems reported poorer outcomes than fan lies of children without these problems. Second, differ- ences in family outcomes for children differing in birth weight or neonatal medical risk were reduced when the presence of child problems was considered as a predic- lor. No effects of birth weight or neonatal medical risk were detected when families of children with problems were excluded from analysis, The results of the Family Burden Interview sug- gested that adverse family outcomes were related to emo- Uonal/bchavioral and developmentallearning problems in the children. Patents’ reluctance to label physical dis orders oF special education placements as problems may hhave stemmed from a belief that children’s medical and educational needs were being appropriately addressed, oF that problems in these areas were to be expected. Sources of family stress included concerns about both the children (self-esteem, acceptance by peers, the future) and their impact on family members (need for child su- pervision, altered family routines). These concerns are similarto those identified in studies of children with other chronic conditions,'®” and they illistate the special chal- lenges faced by the families of some children with VLBW. The most likely reason for the negative effects of VLBW. fo high neonatal medical risk on families is that parents were burdened by birth-related problems in the child's health and development. A further possibility is that, al- ‘though parent distress during the neonatal period may have resolved," this distress had longstanding effects on the family and its relationship with the child. These effects, in turn, may have led to family adversity. Family stresses and dysfunction may also have had negative influences on the chiles psychosocial development, thus contibuting to negs- live bidirectional relationships between family and child outcomes." Thus, both environmental factors and the child's neurodevelopmental impairments may explain long- term family sequelae." Study limitations include reliance on parent self reportand assessment ofonly 1 family member. Direct ob- servation of the family environment and family interac- tions, together with outcome data for other family members, would have provided # more comprehensive assessment of outcome, The disproportionate attrition from our orig nal sample of families of lower sociodemographic status, Which mirrors a rend seen in other long-term follow-up eralizability of four findings. Finally, only a small amount of the variabil- studies also raises questions about the ge y in family outcomes was accounted for by birth weight, nnconatal medical risk, and sociodemographic status. Fami- lies are undoubtedly influenced by many factors that were not considered in our analyses. Despite these weaknesses, the less than 750 g group is 1 of the largest regional co” hhorts to be assessed at school age. The attrition rate was relatively low and sociodemographic status was taken into account in analysis. Association, All rights reserved.More research is needed to explore longer-term fam- ily adversity and the interrelationships of child and family ‘outcomes. Follow-up of our sample of children with VLBW has not demonstrated decreases in child morbidity with time." Stresses on families, therefore, are not likely tod rminish with age and may even increase as progressively sgreater demands are made on children’s cognitive skills and independent functioning.” Other avenues for future research are to examine prospectively the nature ofthe par- cent burdens and parent-child relationships in greater detail, and to identify family characteristics that moderate risks for poor family outcomes." For example, the risks for family sequelae may be lessened when friend- ‘or spouse-support is high oF when families have aecess to counseling resources. Conversely, risks may be heightened in single-parent households or in families with ‘multiple non-child-related stressors.°*!°" The enduring adversity experienced by some fami- lies of children with VLBW supports the need for eare- ful monitoring of family outcomes and for services aimed at improving family support systems and the family en- vironment.”*°" Given the relationship between ongo- ing funetional health problems and family adversity, as- sisting parents in managing child behavior and promoting the child's development may be a critical component of family interventions, Accepted for publication October 4, 2000. This study was supported by grant HD26554 from the National Institute of Child Health and Human Develop- ment, Bethesda, Mal ‘We acknovledge the contributions of Jennifer Angelo- poules, MEd, Anne Birnbaum, Diane Pacella, MEd, and Kathy Winter in data collection and coding, and Mark ‘Schluchter, PhD, for assistance in data analysis. We thank Ruth K. Stein, MD, for use of the Impact on Family Seale Correspondingauthor and reprints: H. Gerry Taylor, PhD, Department of Pediatrics, Rainbow Babies and Children's Hospital, 11100 Euclid Ave, Cleveland, OH 44106-6038, EES} 1. Beckman oki Alenia otis opines in stes ard spp over eet vos. J Spec Eee 1088225565, 16 " 18 0 20 2 2 En 8 6 a. 28 0 2. a 2 2 au 2. 28 Mango 0, Pla, Deck Fetal tachment ecury nvr ow beth wag tars. Dey ajeta 19962014 920 corms rok ur J Wore Ose K Tame, Packan The ‘aan celomental sas of ey low-tech school ae ‘toe 00 Tylor Ho Kan Shashi Hack Priory choo ge ox ‘ome aryl brig cen JD Bea Ped. 100816235 288. Taylor Hin, Hack Sctachagconsenencss ol =750g th weight: 2 revi and pase, Dey Meopjoel 2000172892. Bury, H6 Ka 8 Yeas KO, Vay of auctor symtoms Tap in chien wih eur rainy. CAIs Heros} T0062: saae Jessop, lssman OX Sin REX. chronic ehod lesan en inst J ev Soy Pct 188.947 158 Nermt Me Sten, emu ran 8C To veyowbich aight nspagoes hr nant Joy shay Pea 0867217.22. Taylor HH inch NM, Hack Mil scoot ape sas chi ‘en wah 750 rh wag. das Dn prs. Saray Rute Sas. oping. and Deepen Chien, Naw Yor, I tebe 188 bas 0, Hae, Hubbard. stn AS, Tagen aang uy, ry nd cond probemsin flere: tering proceed mele ‘frestanes Dev Pycopul 0085880 BD angsty Lowe M.Entonmeta rik lag risk, nd elope Suteona Dev Pj! 190420484408 Hack, esau fram, al Th ltt ow ih wight nd sui ikon eurocognne ables sco age. Da ebay Pet 9021841220. cl afore, Eben Souci G Mercure Schon. ouomes chen with ith weighs unde 750 Engl Med 10 Siass Hokingshea A Four itor Ina of Soi Stas New Haven, Cnr Yale n= vary, 175. Deg. Spencer, Te Bet yom in Adina, Sari, nd roses Manat arr Chl a homate Resch: ae ‘ice ®. Pacing Sess nde Maa rd, rates, Ve Pedac Peyelegy Press 1000 (nut Sar CF. Tyr 1, Ebay SM, Boye SC. Determinants a = ponaveness inners cen iteneenterhamorhage J Pea Boye 1052087 08 Sin REX, Jessop DT. PACTS PaparsAECOM Tals Docunning the Py ‘homer Papers oa Mesure of Ipacf Cron ns 2 Fay ore HY: Daparmas ot aces Albert Ent Clg Mess 195. Wile bop O, Esa Kans The Mele Fry assent ie reat and ty. Murat a Ter 10651 ta, Burges 5, rot, Tar, Wate Sani, Yeats KO, Tear Su Sen a ry rie ll. J ead Traub 1o95 334-108, jie eBay, Or, Onao Chi Heh St ela and ality fhe er union subscale the Mela Fay Assess Dent Fam races. 1882731 108 ohn. Mena! fh id tar Chcit Bunton, i: aes ssn Pp 191 Sprawl, CechetD. ila Adve Bohai Sales Clos, Ml: Anica aos Sei 184 Baran enn DA The macerated rite distinc inscaley- ‘hola eu conapal sage anéststealcosceatiors. J Pes Soe Poet Tobe 11781182 Wasted ME Kaus MW, auseCcam P Upsur , Shr JP. Adpason Sung say cond ang mss ef cicen wth sabes. Jer Bota ada 00820918 (runerg MT, Crit WA Longin redirs ofdevlpmantal sau and cil mtacon mpramstr anu at ape, Chie. 18 2. scan Go Fay tunctonng 2 to yas arpa i. Peal rs. stator ‘osari0t 437. Sagal, Rosaraaum PL, Fey Dota Pretlperspeines fhe hath st 4. Fives, Caron, Hck. Expins of tani wth vey trash chi {ucend bated ily of wen-agid chien who vere exams) den wth muse sen Cin Pst 18726209290, Tour weight and wm cones Peace 2000105 560574 4 Sjrnqust AM Een} ow birth we as estan 91 g-inpact on 38, Hak, Tar H, Kn Mich Fuca non nt spel heath ‘he fay dig te et year Scand Soc Me. 10922011812, ‘Tovey GV, Snaeer 6, lac featur tes mbar dst tye ait won resto eae. Mas Res. O00, 30.0-39 Grann CG, Sopra CR. Cast 5, Channg Ms The ng vey ob wena anh fay igang mach ail td. Arch Pe dtr Adlce ea HE MDT SB 2. ©. tar eds of Do yar ean yh bh wage ede 0 grams, ‘rh Pad Ace 20001065515, ‘BR dekirs CL. MeSaughy Te elton of x oily va blest cites subset bhai agus Cin Os Psa 00 Prose, comic, GnmsarS, Soba Very loiter bavi rob 7. yan Reade AL Cao, Kechun UP, san JY Mel ato Tans ansehen day ia nar sample J Pea 1001788608 ratersofveylox bthweght ans Fst or Wnt Retard 41, WabglsAuperus Kot WM, arts Wt Behar pals er ow Wabowre, Au: Oparment of Ci nd Fay Pci, Royal Coens Beco cre, De dCi Newel 185 38:408-16 Heep 142-88, 42 Wah D. Racin , On 8, Regs. The copie ctzone of very pe- 1. Sager, Stor Gua, Colo Lian Bayley Matra pycoog terms nb pater tn eo apeal mestestonaf aw ‘edits and parr tos ater hth fae wig ‘ne oon a0 a ‘Thampon i, Oe Ct A, Jaw OK Merl ayaa asta hearth oan ita weighing 100 grams oss. 180.185 eats 10. Landy SH. Sth KE, Mle-Loncar CL, Swank PR. Praditing copie lznguage an socal perth canes om ey maura beavers chen ‘vaying eres of idole ak Dev Pehl T9078 040-1053. 2 “4 Toledo sues male aig cence. urd Pada 1986155908 Aa (alghan My, urs VA Gz Ht School pereenancs of ELBW chi- Se aconled say Dov Med Ch eur 106 8917 925, Bray Re Whee, Mutt D, Case Cle BU. Bare Kt at of tar at and Detlopnt Progam (HOP onthe Fooeait tans bom prematurely and wih iow stu Javea ‘nese sense (©2001 American Medical Association, All ights reserved. ‘Downloaded From: https:/jamanetwork.com/ on 05/21/2022