title: Distress and growth outcomes in mothers of medically fragile infants.
abstract: BACKGROUND
  With recent advances in medical and nursing care, many high-risk infants are surviving the neonatal period with severe, life-threatening chronic illnesses, resulting in extended hospitalizations and/or frequent rehospitalizations and long periods of dependence on technology for survival.
  
  
  OBJECTIVE
  To describe the factors predicting maternal adjustment in mothers caring for medically fragile infants.
  
  
  METHODS
  Subjects were mothers (n = 67) whose infants had a serious life-threatening illness requiring hospitalization and technology for survival. Data for this longitudinal study were collected at enrollment and hospital discharge, and at 6, 12, and 16 months after birth. Distress was measured as depressive symptoms using the Center for Epidemiologic Studies Depression Scale, and growth was assessed using a personal developmental impact rating scale. Data about personal characteristics, parental role attainment, infant-illness characteristics, and maternal illness distress were collected.
  
  
  RESULTS
  Mothers of medically fragile infants experience distress and growth as a result of their child's illness. Mean scores on the depression scale at both time points were moderately high and a high percentage of mothers scored at risk for depressive symptoms. Maternal developmental impact ratings at 6 months were neutral to slightly negative and at 16 months were between neutral and positive. While the mean depressive symptom scores and maternal developmental ratings were lower at the later time points, these differences were not significant. Maternal depressive symptoms and developmental impact ratings were moderately but negatively correlated at 6 and 16 months, indicating that higher depressive symptoms were related to more negative developmental impact ratings. Distress was influenced by maternal characteristics, hospital environmental stress, and worry about the child's health. Growth was influenced by characteristics of the child's illness, hospital environmental stress, concern about the child's health, and level of maternal role attainment.
  
  
  CONCLUSIONS
  Nurses should consider personal characteristics and level of parental role attainment as well as characteristics of the child and illness-related distress in their approaches to intervention with mothers of critically ill infants.
authors.affiliation: Department of Children's Health, University of North Carolina at Chapel Hill, 27599-7460, USA. mmiles@email.unc.edu
authors.forename: M S
authors.initials: MS
authors.lastname: Miles
authors.forename: D
authors.initials: D
authors.lastname: Holditch-Davis
authors.forename: P
authors.initials: P
authors.lastname: Burchinal
authors.forename: D
authors.initials: D
authors.lastname: Nelson
mesh_terms: D000223:Adaptation, Psychological; D000293:Adolescent; D000328:Adult; D017028:Caregivers / Q000523:psychology*; D003863:Depression / Q000523:psychology*; D005260:Female; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D007234:Infant, Premature; D007235:Infant, Premature, Diseases / Q000451:nursing*; D016014:Linear Models; D008137:Longitudinal Studies; D008297:Male; D009034:Mother-Child Relations; D009035:Mothers / Q000523:psychology*; D011581:Psychological Tests / Q000706:statistics & numerical data; D013997:Time Factors