Ballot, Daynia E

Cory, Barbara J

Davies, Victor A

Martinez, Alma M

Partridge, J Collin

Ranchod, Tushar M

South African Medical Journal (SAMJ)

ORIGINAL ARTICLES913November 2004, Vol. 94, No. 11  SAMJParental perception of neonatal intensive care in publicsector hospitals in South AfricaTushar M Ranchod, Daynia E Ballot, Alma M Martinez, Barbara J Cory, Victor A Davies, J Colin PartridgeBackground. Little is known about parental experience anddecision making with regard to premature infants requiringintensive care in developing countries. We undertook thisstudy to characterise parents’ experience of physiciancounselling and their role in making life-support decisions forvery low-birth-weight (VLBW) (birth weight < 1 501 g)infants born in South Africa’s public-sector neonatal intensivecare units (NICUs).Methods. Parents of surviving VLBW infants treated in threeJohannesburg-area public hospitals and attending follow-upclinics in August 2001 were interviewed regarding theirexperience of perinatal counselling on outcomes (pain,survival, disability), perception of actual and optimal decisionmaking, and satisfaction with NICU communication. Results. Parents of 51 infants were interviewed. Seventy-fiveper cent of parents reported antenatal counselling byphysicians on at least one perinatal topic (severe disability,pain, death, finances or religious/moral considerations).  Themajority of parents (> 60%) who received counselling thoughtthat these topics had been discussed adequately.  Mostparents reported that doctors had the primary decision-making role, either without consulting them (41%) or afterconsulting them (37%).  Joint decision making was rare (14%).Parents wanted more input in life-support decisions than theyreported being given. Conclusion. Counselling is not consistently provided in public-sector hospitals in Johannesburg. Parents of premature infantswant a larger share in NICU decision making than theycurrently experience. Most parents were satisfied withcommunication later during their infant’s hospitalisation.South Africa presents a unique opportunity to study the useof advanced medical technologies in a nation with markeddisparities in access to care.S Afr Med J 2004; 94: 913-916.The limit of viability in developed countries has decreasedamong extremely low-birth-weight (ELBW) infants, i.e. thoseweighing less than 1 001 g.1,2 Neonatal intensive care has alsoimproved outcomes for some prematurely born infants inSouth Africa.3 However, neonatal intensive care unit (NICU)bed shortages sometimes preclude intensive care;4 in someunder-served areas two-thirds of infants born in the publicsector lack access to neonatal units.5 Accordingly, infantsweighing < 1 000 g are not routinely ventilated in public-sectorhospitals in South Africa, and physicians may be ‘lessaggressive’ than parents would like.6 More widespread care ofpremature infants in public hospitals would strain alreadylimited national economic resources, increasing costs oftreating the neurological and physical disabilities amongsurvivors of extreme prematurity.2,7,8Previous studies in South Africa have evaluated parent andprovider attitudes towards hypothetical NICU scenarios.6 Weinvestigated parents’ experiences of physician counselling andparents’ role in actual life-support decisions for very low-birth-weight (VLBW) (birth weight < 1 501 g) infants born in SouthAfrica’s public hospitals.  MethodsParticipantsWe interviewed parents of surviving VLBW (< 1 501 g) infantsattending NICU follow-up clinics, regardless of gestational age,condition at birth, or inborn/outborn status.  Parents wereeligible if their newborn infant had been admitted to public-sector NICUs at Johannesburg General Hospital, CoronationHospital, or Chris Hani Baragwanath Hospital, all of whichserve predominantly low-income patients in Johannesburg.ProceduresIn July - August 2001, parents were enrolled during theirinfant’s follow-up clinic appointment.  Study personnel (JCP,TMR) then conducted 20-minute interviews in private roomswith the assistance of nurse translators. Given the linguisticdiversity and low literacy rates in South Africa, we used nursesSanta Clara Valley Medical Center, Santa Clara, California, USATushar M Ranchod,  MDDepartment of Pediatrics, University of California and San Francisco GeneralHospital, USAAlma M Martinez, MD, MPHJ Colin Partridge, MD, MPHDepartment of Paediatrics, University of the Witwatersrand and JohannesburgGeneral HospitalDaynia E Ballot, PhD, FCP (Paed), MB BChBarbara J Cory, RN, DNEdVictor A Davies, MB BCh, DCH, FCPaedwho translated questions into the appropriate language andback-translated parent responses.The interview tool, originally developed for parentinterviews in California and Australia,9 was modified forcultural and medical relevance in South Africa. Questions wereLikert-scale graded responses or yes/no questions regardingparent demographic information, the infant’s health status,parent experiences and satisfaction with perinatal physiciancounselling on potential outcomes (survival, disability, pain),parent perceptions of actual and optimal decision making, andoverall satisfaction with the NICU experience.  Interviewsallowed opportunities for open-ended responses. Statistical analysisAnalysis was performed using the Stata statistical package(Stata Corporation, College Station, Texas, USA). A chi-squaretwo-sample test of proportions was used for comparison ofproportions. Wilcoxon’s signed-rank test was used to comparepaired data with ordinal outcomes. We considered p-values < 0.05 significant. Institutional review boards at the University of California,San Francisco and the University of the Witwatersrandapproved the study. Interviewed parents were compensated fortravel expenses, and nurse translators for their time. ResultsSample demographicsWe interviewed 51 parents of 51 surviving infants (data notreported for one twin who died).  No parent refused aninterview.  Demographic data for parents and their infants arepresented in Table I. The majority of interviewed parents weremothers, with a mean age of 28 years. The majority of parentswere Christian (74%), Zulu-speaking (48%), and had completedmore than 8 years of schooling (74%).  The average infantgestational age was 30 weeks.  The average birth weight was 1163 g; 14 infants weighed less than 1 001 g at birth. Femalescomprised 57% of infants.  The median infant age at interviewwas 4 months.Antenatal counsellingA minority of parents reported physician counselling on eachtopic (severe disability, pain, death, finances, or religious/moral considerations) during perinatal care (Fig. 1).  However,75% of parents reported discussion of at least one topic.  Over60% of parents reported that physicians had not counselledthem on estimated mortality.  Eighty per cent of parents didnot recall their physicians discussing the option of withholdingresuscitation at delivery.  Many parents said they were notcounselled regarding the possibility of severe disability (49%),pain (55%), death of their child (61%), or financial (74%) orreligious/moral (78%) considerations.  There were nodifferences in age, schooling, ethnicity or religion betweenthose who received and those who did not receive perinatalcounselling.  Compared with parents of infants weighing ≥ 1 000 g at birth, parents of infants weighing < 1 001 g (ELBW)were more likely to report being adequately counselledregarding disability (64% v. 35%, p < 0.03), finances (50% v.11%, p < 0.01) and moral/religious issues (50% v. 11%, p < 0.01).  While not significant, more parents of ELBW infantsrecalled physicians discussing estimated survival than didparents of infants weighing > 1 000 g at birth (57% v. 32%, p = 0.053).  Perceived adequacy of counselling did not differbetween parents of infants born at ≤ 28 weeks versus ≥ 29weeks.November 2004, Vol. 94, No. 11  SAMJORIGINAL ARTICLES914Table I. Demographic characteristics of interviewed parents andinfants (N = 51)CharacteristicsParents  ValueMean  age (years, ± SD) 28 ± 6Sex (%)Female 98Male 2Religion (%)Christian 74None 18Hindu 2Muslim 2Traditional 2Race or ethnic group (%)Zulu 48Tsetswana 16Xhosa 10Shangaan 8Sotho 6Ndebele 4Venda 2Banda 2Swazi 2Caucasian 2Years of schooling0 - 4 years 25 - 8 years 249 - 12 years 4113 - 16 years 27> 16 years 6Infants (N = 51)Median (range) age at interview (months) 4 (1 - 17)Mean (± SD) gestational age (weeks) 30 ± 2Mean (± SD) birth weight (grams) 1 163 ± 187Infants born < 1 001 g (N) 14Sex (%)Female 57Male 43SD = Standard deviation.ORIGINAL ARTICLESThe majority of counselled parents perceived that severedisability, pain, death, finances or religious/moralconsiderations had been adequately discussed (Fig. 1).  Parentswith 12 or more years of schooling were more likely to reportinadequate discussion of disability (56% v. 18%, p < 0.01, chi-square analysis).  Perceived adequacy of counselling was notstatistically correlated with parental age, ethnicity or religion.Decision makingThe majority of parents indicated that doctors had played aprimary role in NICU decisions about resuscitation and lifesupport (Table II).  While a majority (88%) agreed withphysician recommendations, most parents reported thatdoctors had made decisions either without consulting them(41%) or after consulting them (37%).  Joint decision makingwas rare (14%), and < 10% of parents themselves made life-support decisions for their infant.  Asked the optimal process for making decisions for NICUinfants, 49% of parents preferred joint decision making withphysicians and 37% felt that physicians should make the finaldecision after consulting parents.  Less than 10% of parentspreferred doctors to make life-support decisions withoutconsultation, and < 10% preferred making decisions withoutphysician involvement.  Overall, parents preferred greaterinput in decision making than they perceived they had beengiven (p < 0.01, Wilcoxon’s signed-rank test).  Zulu-speakingparents were less likely than non-Zulu-speaking parents toreport that doctors should make the final decision (25% v. 63%,p < 0.01, chi-square analysis).  No relationships betweenparental age, religion or education and optimal counsellingwere statistically significant.Parent experience of NICU careAlthough a minority of parents recalled antenatal counsellingby physicians as adequate, the majority (75%) felt that theyunderstood their infant’s condition in the NICU.  Parents morecommonly reported nurses as being more helpful thanphysicians in talking about the infant’s treatment and status(47% v. 37%). Slightly more than half (57%) of interviewedparents were satisfied with overall communications duringNICU care.  Nevertheless, two-thirds of parents worried thattheir baby might die in the NICU, and 27% feared their babycould die after hospital discharge. DiscussionThis is the first study of parental experience of physiciancounselling and decision making for VLBW infants receivingintensive care in public-sector hospitals in South Africa.  In asimilar population in South Africa, Wainer and Khuzwayo6demonstrated that parents would prefer more aggressiveneonatal intensive care than providers, even when healthresources are limited.  They concluded that parents played arelatively passive parental role in life-support decisions.6 Ourresults demonstrate the difference between parents’ actualexperiences and their perceptions of optimal counselling anddecision making.Perinatal counsellingCounselled parents felt that physicians adequately discussedtopics relevant to NICU decision making before delivery.Parents of ELBW infants weighing < 1 000 g were more likelyto report adequate physician counselling, indicating thatphysicians may reserve more thorough counselling for patientswith worse prognoses.  Paradoxically, most parents reportedunderstanding their infant’s condition well, whethercounselled or not.  This disparity may stem from parents’limited understanding of complex medical issues or fromexplanations given by nurses.  Several barriers probablydiminish parent involvement in life-support decisions and limittheir overall satisfaction with communication in South Africa’spublic-sector hospitals.  Physicians’ and nurses’ workloadsconstrain time for extensive discussion, mothers often receivelittle prenatal care and are discharged 6 hours afteruncomplicated deliveries, and poor parents often do not havetelephones and cannot visit the nursery frequently.  We did not find demographic differences between parentswho did and did not receive counselling.  We might expectcounselling to differ in private versus public-sector hospitalswhere resource shortages restrict NICU admissions, but thisstudy was not designed to elucidate these differences.  In multicultural South Africa, particularly in the publicsector, language differences complicate physician consultationwith parents of VLBW infants.  Many physicians cannot915November 2004, Vol. 94, No. 11  SAMJFig 1. Perinatal counselling (N = 51).Possibility  ofdeathSeveredisabilityExperience ofpainFinancialconsiderationsReligious/moralconsiderations%100806040200Not counselledCounselledinadequatelyCounselledadequatelyTable II. Perceived and optimal life support decision making (N = 51)Ultimate decision-maker Perceived (%) Optimal (%)Doctor alone 41 8Doctor after consulting parents 37 37Doctors and parents together 14 49Parents after consulting doctors 4 6Parents alone 4 0November 2004, Vol. 94, No. 11  SAMJORIGINAL ARTICLEScommunicate directly with patients and must rely on nurseinterpreters.  The time necessitated by translation constrainsphysician counselling and may limit parental involvement ininformed decision making.  Ethnic differences between patientsand physicians may provide yet another obstacle to clearconsultation, as attitudes towards health care depend heavilyon cultural or religious beliefs.10Decision makingThe disparity we document between actual and optimaldecision making may result from interaction between parentand physician attitudes and behaviours.  Wainer andKhuzwayo6 showed that South African mothers trust healthcare providers, despite preferring more aggressive medicaltreatments than public-sector hospital staff.  Our study showsthat parents desire a larger share in NICU decision making fortheir premature infant than they are currently given.  Parentsdo not want physicians to make decisions without their input;neither do they desire sole decision making responsibility.Parent preferences regarding decision making appear in part tobe culturally determined, as demonstrated by preferences ofZulu-speaking versus non-Zulu-speaking parents.  Parent satisfactionJust over half the parents were satisfied with NICUcommunication, although a significant proportion did notreceive comprehensive antenatal counselling by physicians.We have shown that nurses are more often perceived as helpfulthan physicians, perhaps because nurses share more culturaland linguistic commonalities with patients.11 Nurses spendmore time at the bedside and often have to explain medicalconditions when physicians are not available.  Nurses play anintegral role in communicating with and supporting parents.Further training to promote counselling by nurses wouldprobably improve parents’ understanding and satisfaction withNICU care.ConclusionsLimited technological resources and medical and social realitiesrestrict options available for premature infants in SouthAfrica,5,12 aggravating the difficulties of improving NICU carefor infants born in the public sector.  Increased perinatalcounselling would lead to higher rates of parental satisfactionwith neonatal care in intensive care units.  Improvedcounselling should allow parents to take a more activedecision-making role. Restricted staffing limits the timeavailable for extensive parent counselling by physicians,leaving parents to depend on nurses to help explain theirinfant’s status.  More opportunities for counselling could befacilitated by increased access to prenatal care or longerhospitalisation after delivery.  Improved counselling, perhapswith more widespread use of trained translators or informationpamphlets, should allow parents to take a more activedecision-making role.  Neither governmental restrictions nortechnological limitations should obviate the need to establishconsistent parent counselling as a standard of care.  Funding was provided by the Department of Pediatrics,University of California, San Francisco. We thank Professor K DBolton at Coronation Hospital and Joyce Mlandu at Chris HaniBaragwanath Hospital for their assistance in arranging patientinterviews. We appreciate the assistance of H William Taeusch inreviewing this manuscript.References1. Allen MC, Donohue PK, Dusman AE. The limit of viability — neonatal outcome of infantsborn at 22 to 25 weeks' gestation. N Engl J Med 1993; 329: 1597-1601.2. Lorenz JM, Wooliever DE, Jetton JR, Paneth N. A quantitative review of mortality anddevelopmental disability in extremely premature newborns. Arch Pediatr Adolesc Med 1998;152: 425-435.3. Cooper PA, Saloojee H, Bolton KD, Mokhachane M. Survival of low-birth-weight infants atBaragwanath Hospital — 1950 - 1996. S Afr Med J 1999; 89: 1179-1181.4. Cooper PA. Very-low-birth-weight infants in South Africa. S Afr Med J 1999; 89: 1160-1161.5. Rothberg AD, Cooper PA. Rationing versus equity — the South African dilemma. S Afr Med J1999; 89: 1151-1153.6. Wainer S, Khuzwayo H. Attitudes of mothers, doctors, and nurses toward neonatal intensivecare in a developing society. Pediatrics 1993; 91: 1171-1175. 7. Wood NS, Marlow N, Costeloe K, Gibson AT, Wilkinson AR. Neurologic and developmentaldisability after extremely preterm birth. EPICure Study Group. N Engl J Med 2000; 343: 378-384.8. Doyle LW. Outcome at 5 years of age of children 23 to 27 weeks' gestation: refining theprognosis. Pediatrics 2001; 108: 134-141.9. Millar SD, Epstein L, Schab DW, Partridge JC, Martinez AM. Counseling and decision-making for very low birthweight (VLBW) infants: maternal perspectives. Pediatr Res 1999; 45:A.10. Kleinman A, Eisenberg L, Good B. Culture, illness, and care: clinical lessons fromanthropologic and cross-cultural research. Ann Intern Med 1978; 88: 251-258.11. Hansen JD. The role of the doctor in the changing health service. S Afr Med J 1978; 54: 161-165.12. Cooper PA, Sandler DL. Outcome of very low birth weight infants at 12 to 18 months of agein Soweto, South Africa. Pediatrics 1997; 99: 537-544.Accepted 21 June 2004.916

Parental perception of neonatal intensive care in public sector hospitals in South Africa

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Parental perception of neonatal intensive care in public sector hospitals in South Africa

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