title: Parental perception of neonatal intensive care in public sector hospitals in South Africa.
abstract: BACKGROUND
  Little is known about parental experience and decision making with regard to premature infants requiring intensive care in developing countries. We undertook this study to characterise parents' experience of physician counselling and their role in making life-support decisions for very low-birth-weight (VLBW) (birth weight < 1 501 g) infants born in South Africa's public-sector neonatal intensive care units (NICUs).
  
  
  METHODS
  Parents of surviving VLBW infants treated in three Johannesburg-area public hospitals and attending follow-up clinics in August 2001 were interviewed regarding their experience of perinatal counselling on outcomes (pain, survival, disability), perception of actual and optimal decision making, and satisfaction with NICU communication.
  
  
  RESULTS
  Parents of 51 infants were interviewed. Seventy-five per cent of parents reported antenatal counselling by physicians on at least one perinatal topic (severe disability, pain, death, finances or religious/moral considerations). The majority of parents (> 60%) who received counselling thought that these topics had been discussed adequately. Most parents reported that doctors had the primary decision-making role, either without consulting them (41%) or after consulting them (37%). Joint decision making was rare (14%). Parents wanted more input in life-support decisions than they reported being given.
  
  
  CONCLUSIONS
  Counselling is not consistently provided in public-sector hospitals in Johannesburg. Parents of premature infants want a larger share in NICU decision making than they currently experience. Most parents were satisfied with communication later during their infant's hospitalisation. South Africa presents a unique opportunity to study the use of advanced medical technologies in a nation with marked disparities in access to care.
authors.affiliation: Santa Clara Valley Medical Center, Santa Clara, California, USA.
authors.forename: Tushar M
authors.initials: TM
authors.lastname: Ranchod
authors.forename: Daynia E
authors.initials: DE
authors.lastname: Ballot
authors.forename: Alma M
authors.initials: AM
authors.lastname: Martinez
authors.forename: Barbara J
authors.initials: BJ
authors.lastname: Cory
authors.forename: Victor A
authors.initials: VA
authors.lastname: Davies
authors.forename: J Colin
authors.initials: JC
authors.lastname: Partridge
mesh_terms: D000328:Adult; D003657:Decision Making; D005260:Female; D006779:Hospitals, Public / Q000592:standards*; D006801:Humans; D007231:Infant, Newborn; D019102:Infant, Very Low Birth Weight; D007363:Intensive Care Units, Neonatal / Q000592:standards*; D008297:Male; D010290:Parents / Q000523:psychology*; D017060:Patient Satisfaction; D013019:South Africa