Am J Perinatol 2023; 40(13): 1413-1420
DOI: 10.1055/s-0041-1736294
Original Article

Parent Activation in the Neonatal Intensive Care Unit

Ryan Skeens
1   Division of Neonatology, Department of Pediatrics, Vanderbilt University Medical Center, Nashville, Tennessee
,
Kerri L. Cavanaugh
2   Division of Nephrology and Hypertension, Department of Medicine, Vanderbilt University Medical Center, Nashville, Tennessee
3   Vanderbilt Center for Effective Health Communication, Vanderbilt University Medical Center, Nashville, Tennessee
,
Robert Cronin
4   Department of Medicine and Pediatrics, Vanderbilt University Medical Center, Nashville, Tennessee
5   Department of Biomedical Informatics, Vanderbilt University Medical Center, Nashville, Tennessee
,
QinGxia Chen
6   Department of Biostatistics, Vanderbilt University Medical Center, Nashville, Tennessee
7   Department of Ophthalmology and Visual Sciences, Vanderbilt University Medical Center, Nashville, Tennessee
,
Yuhan Liu
6   Department of Biostatistics, Vanderbilt University Medical Center, Nashville, Tennessee
,
Hannah Huth
8   College of Medicine, University of Tennessee Health Science Center, Memphis, Tennessee
,
Gretchen P. Jackson
5   Department of Biomedical Informatics, Vanderbilt University Medical Center, Nashville, Tennessee
9   Department of Pediatric Surgery, Vanderbilt University Medical Center, Nashville, Tennessee
10   IBM Watson Health, Cambridge, Massachusetts
› Author Affiliations
Funding This study was funded through the Center for Effective Health Communication Mini Grant Program, Vanderbilt University Medical Center, Nashville, TN.

Abstract

Objective Patient activation is the knowledge, skills, and confidence to manage one's health; parent activation is a comparable concept related to a parent's ability to manage a child's health. Activation in adults is a modifiable risk factor and associated with clinical outcomes and health care utilization. We examined activation in parents of hospitalized newborns observing temporal trends and associations with sociodemographic characteristics, neonate characteristics, and outcomes.

Study Design Participants included adult parents of neonates admitted to a level-IV neonatal intensive care unit in an academic medical center. Activation was measured with the 10-item Parent version of the Patient Activation Measure (P-PAM) at admission, discharge, and 30 days after discharge. Associations with sociodemographic variables, health literacy, clinical variables, and health care utilization were evaluated.

Results A total of 96 adults of 64 neonates were enrolled. The overall mean P-PAM score on admission was 81.8 (standard deviation [SD] = 18), 88.8 (SD = 13) at discharge, and 86.8 (SD = 16) at 30-day follow-up. Using linear mixed regression model, P-PAM score was significantly associated with timing of measurement. Higher P-PAM scores were associated with higher health literacy (p = 0.002) and higher in mothers compared to fathers (p = 0.040). There were no significant associations of admission P-PAM scores with sociodemographic characteristics. Parents of neonates who had a surgical diagnosis had a statistically significant (p = 0.003) lower score than those who did not. There were no associations between discharge P-PAM scores and neonates' lengths of stay or other indicators of illness severity.

Conclusion Parental activation in the NICU setting was higher than reported in the adult and limited pediatric literature; scores increased from admission to discharge and 30-day postdischarge. Activation was higher in mothers and parents with higher health literacy. Additional larger scale studies are needed to determine whether parental activation is associated with long-term health care outcomes as seen in adults.

Key Points

  • Little is known about activation in parents of neonates.

  • Activation plays a role in health outcomes in adults.

  • Larger studies are needed to explore parent activation.



Publication History

Received: 24 March 2021

Accepted: 27 August 2021

Article published online:
12 October 2021

© 2021. Thieme. All rights reserved.

Thieme Medical Publishers, Inc.
333 Seventh Avenue, 18th Floor, New York, NY 10001, USA

 
  • References

  • 1 Hibbard JH, Stockard J, Mahoney ER, Tusler M. Development of the Patient Activation Measure (PAM): conceptualizing and measuring activation in patients and consumers. Health Serv Res 2004; 39 (4, pt. 1): 1005-1026
  • 2 Greene J, Hibbard JH. Why does patient activation matter? An examination of the relationships between patient activation and health-related outcomes. J Gen Intern Med 2012; 27 (05) 520-526
  • 3 Nair D, Cavanaugh KL. Measuring patient activation as part of kidney disease policy: are we there yet?. J Am Soc Nephrol 2020; 31 (07) 1435-1443
  • 4 Hibbard JH, Greene J. What the evidence shows about patient activation: better health outcomes and care experiences; fewer data on costs. Health Aff (Millwood) 2013; 32 (02) 207-214
  • 5 Hibbard JH, Greene J, Sacks RM, Overton V, Parrotta C. Improving population health management strategies: identifying patients who are more likely to be users of avoidable costly care and those more likely to develop a new chronic disease. Health Serv Res 2017; 52 (04) 1297-1309
  • 6 Hibbard JH, Greene J, Overton V. Patients with lower activation associated with higher costs; delivery systems should know their patients' ‘scores’. Health Aff (Millwood) 2013; 32 (02) 216-222
  • 7 Remmers C, Hibbard J, Mosen DM, Wagenfield M, Hoye RE, Jones C. Is patient activation associated with future health outcomes and healthcare utilization among patients with diabetes?. J Ambul Care Manage 2009; 32 (04) 320-327
  • 8 Marshall R, Beach MC, Saha S. et al. Patient activation and improved outcomes in HIV-infected patients. J Gen Intern Med 2013; 28 (05) 668-674
  • 9 Hibbard JH, Greene J, Tusler M. Improving the outcomes of disease management by tailoring care to the patient's level of activation. Am J Manag Care 2009; 15 (06) 353-360
  • 10 Pennarola BW, Rodday AM, Mayer DK. et al; HSCT-CHESS Study. Factors associated with parental activation in pediatric hematopoietic stem cell transplant. Med Care Res Rev 2012; 69 (02) 194-214
  • 11 DeCamp LR, Leifheit K, Shah H. et al. Cross-cultural validation of the parent-patient activation measure in low income Spanish- and English-speaking parents. Patient Educ Couns 2016; 99 (12) 2055-2062
  • 12 Liberman DB, Pham PK. Parent activation in the pediatric emergency department: Theory vs. reality. Patient Educ Couns 2018; 101 (06) 1116-1122
  • 13 Melnyk BM, Alpert-Gillis L, Feinstein NF. et al. Creating opportunities for parent empowerment: program effects on the mental health/coping outcomes of critically ill young children and their mothers. Pediatrics 2004; 113 (06) e597-e607
  • 14 Wallston KA, Cawthon C, McNaughton CD, Rothman RL, Osborn CY, Kripalani S. Psychometric properties of the brief health literacy screen in clinical practice. J Gen Intern Med 2014; 29 (01) 119-126
  • 15 Hibbard JH, Mahoney ER, Stockard J, Tusler M. Development and testing of a short form of the patient activation measure. Health Serv Res 2005; 40 (6, pt. 1): 1918-1930
  • 16 Mitchell SE, Gardiner PM, Sadikova E. et al. Patient activation and 30-day post-discharge hospital utilization. J Gen Intern Med 2014; 29 (02) 349-355
  • 17 Harris PA, Taylor R, Thielke R, Payne J, Gonzalez N, Conde JG. Research electronic data capture (REDCap)–a metadata-driven methodology and workflow process for providing translational research informatics support. J Biomed Inform 2009; 42 (02) 377-381
  • 18 Bührer C, Metze B, Obladen M. CRIB, CRIB-II, birth weight or gestational age to assess mortality risk in very low birth weight infants?. Acta Paediatr 2008; 97 (07) 899-903
  • 19 Parry G, Tucker J, Tarnow-Mordi W. UK Neonatal Staffing Study Collaborative Group. CRIB II: an update of the clinical risk index for babies score. Lancet 2003; 361 (9371): 1789-1791
  • 20 Prey JE, Woollen J, Wilcox L. et al. Patient engagement in the inpatient setting: a systematic review. J Am Med Inform Assoc 2014; 21 (04) 742-750
  • 21 Hibbard JH, Greene J, Becker ER. et al. Racial/ethnic disparities and consumer activation in health. Health Aff (Millwood) 2008; 27 (05) 1442-1453
  • 22 Robinson JR, Anders SH, Novak LL. et al. Consumer health-related needs of pregnant women and their caregivers. JAMIA Open 2018; 1 (01) 57-66
  • 23 Anders S, Aaron H, Jackson GP, Novak LL. Supporting caregivers in pregnancy: a qualitative study of their activities and roles. J Patient Exp 2019; 6 (02) 126-132
  • 24 Deave T, Johnson D, Ingram J. Transition to parenthood: the needs of parents in pregnancy and early parenthood. BMC Pregnancy Childbirth 2008; 8: 30
  • 25 Kadivar M, Mozafarinia SM. Supporting fathers in a NICU: effects of the HUG your baby program on fathers' understanding of preterm infant behavior. J Perinat Educ 2013; 22 (02) 113-119
  • 26 Prouhet PM, Gregory MR, Russell CL, Yaeger LH. Fathers' stress in the neonatal intensive care unit: a systematic review. Adv Neonatal Care 2018; 18 (02) 105-120
  • 27 Fowles JB, Terry P, Xi M, Hibbard J, Bloom CT, Harvey L. Measuring self-management of patients' and employees' health: further validation of the patient activation measure (PAM) based on its relation to employee characteristics. Patient Educ Couns 2009; 77 (01) 116-122
  • 28 Couture EM, Chouinard MC, Fortin M, Hudon C. The relationship between health literacy and patient activation among frequent users of healthcare services: a cross-sectional study. BMC Fam Pract 2018; 19 (01) 38
  • 29 Jacobson AF, Sumodi V, Albert NM. et al. Patient activation, knowledge, and health literacy association with self-management behaviors in persons with heart failure. Heart Lung 2018; 47 (05) 447-451
  • 30 Smith SG, Curtis LM, Wardle J, von Wagner C, Wolf MS. Skill set or mind set? Associations between health literacy, patient activation and health. PLoS One 2013; 8 (09) e74373
  • 31 Melnyk BM, Feinstein NF, Alpert-Gillis L. et al. Reducing premature infants' length of stay and improving parents' mental health outcomes with the Creating Opportunities for Parent Empowerment (COPE) neonatal intensive care unit program: a randomized, controlled trial. Pediatrics 2006; 118 (05) e1414-e1427