Identification of Internal and External Stressors in Parents of Newborns in Intensive Care
Cindy Grosik, MSN, RNC, CNL; Denise Snyder, MSN, NNP-BC; Gerard M Cleary, DO;
Diane M Breckenridge, PhD, RN; Barbara Tidwell
Perm J 2013 Summer; 17(3):36-41
The purpose of this study was to identify parents' self-reported stressors as they experience their baby's course in the neonatal intensive care unit (NICU). Miles, Funk & Carlson (1993) Parental Stressor Scale: Neonatal Intensive Care Unit was used to survey 119 parents of neonatal infants, born at 24 weeks to full term, in the 28-bed level 3 NICU of a mid-Atlantic, Magnet-designated acute care hospital with 665 licensed beds. The newly developed Grosik, Snyder, Cleary and Tidwell NICU External Stressors and Stress Reduction Scale (2006), a 5-point Likert scale, was also used. Intrapersonal and interpersonal stressors were categorized as internal (occurring within the NICU) and extrapersonal (occurring outside the NICU) as external stressors. The findings were used to develop a new practice in the NICU to help reduce parental stressors.
Our family-centered neonatal intensive care unit (NICU) is home to our hospital's smallest and sometimes sickest patients. For parents, the NICU experience is an unanticipated journey filled with stress, emotional turmoil, strains on relationships and, at times, depression. Parents struggle to restore balance to their lives as they navigate the NICU experience, hoping for the best.
The NICU journey is life changing; parents' lives become unharmonious. The birth of a baby is supposed to be a happy event, but for parents with an infant in the NICU, it is marked by fear, sadness, guilt, and anger. Stress arises when individuals perceive that they cannot adequately cope. According to the criteria in the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders (DSM-IV-TR),1 NICU hospitalization is a traumatic stressor.2
The stress experienced by these parents has been compared to a posttraumatic stress response and has been investigated in numerous research studies.3,4 Although it is clear that the NICU experience is stressful, it is important to keep in mind that the perception of stress changes during the different stages of the infant's stay.4
Background and Significance
Until recently, the NICU gave little consideration to the need to assess what external stressors affect parents. The concept of stress is well known, however its causes and effects are unique to each of us. This study is important because the highest priority in the NICU is the health and well-being of the neonate. To achieve this priority and to provide holistic family-centered care, the NICU staff must acknowledge and have a better understanding of the parents' experience. It has been well documented that the NICU journey is stressful for parents.5,6 Multiple studies have evaluated the NICU internal stressors that affect parents during and after the NICU stay. To date, there has been little exploration of the external stressors that parents have to endure while their baby is in the NICU. The lack of data regarding external stressors strongly supports the need to implement an assessment of outside stressors affecting NICU parents.
The purpose of the study was to ascertain what internal stressors play a role in determining the NICU experience for parents, as well as to assess external stressors. The DSM-IV-TR states that "posttraumatic stress disorder is a psychological disorder that follows exposure to a traumatic event involving the threat of death or serious injury to the individual or another that is accompanied by feelings of horror, helplessness, or intense fear."1,3 Every year in the US more than 480,000 babies are born prematurely, creating insurmountable stress and emotional burden on families.7 Once aware of these stressors, NICU staff can implement interventions to help parents restore a sense of balance. To that end, we sought to identify both the internal and external stressors affecting families with babies hospitalized in the NICU for more than 1 week.
Stress directly affects parents' ability to cope when faced with the challenges of having a critically ill neonate in the NICU.8 Parental anxiety may be reduced when the NICU staff recognize parental stress early and implement proper interventions.9 A NICU that provides a parent-friendly atmosphere allows parents to adapt more successfully to the NICU environment.10 Stressors experienced by parents do not differ according to class, sex, or level of education.8 The NICU setting, therefore, has been recognized throughout previous studies as a stressful environment for parents. It has been recognized that the NICU team should provide families with emotional support; bedside nurses are in a unique position to reduce heightened parental anxiety and are depicted as the most influential in that regard.11
Parents feel a sense of loss and begin grieving when their baby is admitted to the NICU.12 These parents experience emotional struggles and their dreams are devastated. Specific nursing interventions can reduce stress for parents so they can begin the healing process.12 When nurses understand parents' views and propose strategies that promote effective collaboration, the level of stress decreases in the NICU environment.13 There are many factors that play a role in parents' adaptation to stress. An important strategy recognized to decrease parental stress is to incorporate parents into NICU team meetings.14 Early engagement with famillies allows the NICU team to extract pertinent information about parental concerns and issues, and hopefully to decrease parental uncertainty.14 An understanding of the parents' experience is an impetus for forming or modifying effective strategies and optimizing outcomes for both the neonate and the parents. When parents are supported and understood, they can accept their new reality and aspire to new dreams.12
If caregivers have a better understanding of parental stress, they can provide services and resources to help parents cope with having a critically ill newborn in the NICU.15 The birth of a sick infant causes psychological distress and trauma to parents.16 Studies have found that early crisis intervention for parents and continued therapy throughout the NICU stay are beneficial for reducing symptoms of trauma.16 In addition, the scope of the baby's illness or the length of stay made a difference in how this time period was perceived.17 Many families reported that this period was an acute crisis for the family unit; families have described it as very traumatic.17
The term stress is often used for any factor in a person's life that causes change. Stress can present emotional, physical, social, or economic demands. Relatively few studies have addressed the effects of outside demands associated with NICU admission. Recently, outside stressors have been recognized as affecting the NICU experience for parents. Using the Parental Stressor Scale: Neonatal Intensive Care Unit (PSS: NICU),18 one study concluded that further investigation of "practical worries and daily hassles" was needed.19 The birth of a premature baby, events in the NICU, and the NICU environment can be so stressful it can lead to family decomposition and posttraumatic stress disorder.20
The health care team in the NICU plays an essential role and is considered a major source of parental support.17 Interventions provided by the NICU staff that concentrate on stress reduction can create new modalities to determine the staff's effects on the parents. Encouraging parents to address and to understand their emotional distress helps them cope, restores optimism, and generates hope. It was noted that when parents are prepared for NICU admission, they experience less stress.21 This can be difficult to accomplish because many patients are admitted to the NICU on an emergency basis that precludes sufficient time to educate parents. Neonatal nurses must adopt evidence-based interventions that decrease family stress and enrich family coping. Significant stress experienced by parents can lead to disruption in the family's equilibrium.15 A hospital-based stress-reduction support group for parents has been shown to be beneficial.22 When given the opportunity to discuss problems and concerns, parents reported having less stress, anxiety, and depression. Nurses can help decrease parental stressors just by listening and providing a foundation that strengthens parents emotionally.20
Parents have little time to prepare for traumatic stressors related to NICU admission.2 During the crisis, families with an organized network of social support fare better than families who remain isolated.2 In comparison, other studies have found that trauma caused by a NICU experience may have significant influences on the parent-child relationship.16 This information facilitates an individualized approach to NICU family stress and development of strategies to manage stress. One theory is that parents have a hard time coping because they do not feel empowered.23 Encouraging parents to be part of the team improves their sense of belonging, leads to greater engagement in the care of their baby, and decreases their fear.23
Conceptual Framework to Define Stressors and Prevention Interventions
Stress is a complex phenomenon conceptualized in various ways. The term stress is often used to describe perceived stressors, such as anxiety, depression, anger, and fear.19 There is no clear definition of stress, and researchers continue to seek a greater understanding of it. The assessment tool PSS: NICU was used to explore the sources of perceived stress—the stressors—or situational variables (eg, the infant, the event, and the environment).19 Neuman's Conceptual Framework focuses on the wellness of the client system in relation to environmental stress and reactions to stress.24 The environment is described as all the internal and external factors that influence the client system. Wellness is described as a secure condition that is intact and harmonious. Neuman's Conceptual Framework can be applied to NICU parents because they have had interruptions in their equilibrium because of stressors. Stress is categorized as intrapersonal (occurring within the client), interpersonal (occurring between individuals), or extrapersonal (occurring outside the client).24 This health care focus was adapted in this study to more clearly identify external stressors of NICU parents and to determine what preventive interventions have the best outcomes.
We used the PSS: NICU after obtaining permission from its originator, Margaret Miles. The design of this scale emphasizes 4 dimensions of the environment and experiences in the NICU: sights and sounds of the unit, effects of the infant's appearance, change in parent role, and relationship with the staff.18 The PSS: NICU scale has been used consistently for over 20 years to assess parental stress within the NICU environment.
We used an additional assessment tool, the NICU External Stressors and Stress Reduction Scale (Figures 1 and 2). Included in Figure 1 is a compilation of family responsibilities that might increase stress for parents outside of the hospital environment. Figure 2 is a list of stress-reducing techniques that parents might use. These tools were used to evaluate parental external stressors and the mechanisms parents used to cope with stress during the NICU stay. Parents used these instruments to rate their stress caused by external stressors with a Likert scale.
Each Monday, qualified parents were asked by the administrative assistant to complete the research package. The package included four questionnaires: an internal stressor questionnaire, the external stressors questionnaire, the stress-reduction techniques, and the demographic information sheet (Figure 3).
A convenience sample of 119 participants were recruited from the parents of infants who had been admitted to the level 3, 28-bed NICU of a suburban Philadelphia 665-bed community teaching hospital. The institutional review board of Abington Memorial Hospital approved this study. The consent form was explained to parents, and those who consented were enrolled in the study. Inclusion criteria were admission of baby to the NICU and length of stay greater than 1 week. The exclusion criterion was length of stay shorter than 1 week. Mothers and fathers were asked to participate separately, within 7 days after the infant's admission to the NICU.
Out of the 119 respondents, 60.5% were mothers. Of these, 37.1% were between age 25 and 30 years, 30% were older than age 35 years, 78.6% were married, and 58.6% owned their homes. The annual income of 36.5% of the women who participated in the study was >$80,000, and college was the highest level of education completed for 67.2%. Fathers were 39.5% of the respondents. Of these, 29.8% were age 25-30 years, 29.8% were age >35 years, 68.1% owned their homes, and 40% had a yearly salary >$80,000. For 40.0%, college was the highest level of education completed (Table 1).
Analysis of Internal and External Stressors and Stress-Reduction Themes
The purpose of this study was to evaluate the internal and external stressors related to the NICU experience that contributed the most to parental stress response during the NICU stay.
Stressors were categorized as internal or external. Additional analysis focused on the extent to which the study participants' responses reflected the most common coping mechanisms for families. Internal stressors were those occurring within the NICU and external stressors occurred outside the NICU (Table 2). Internal stressors were further classified as intrapersonal or interpersonal; external stressors were not further classified.
Stress levels reported by parents were scored from 1 to 5 on a Likert scale for each question. With regard to intrapersonal stressors, the highest stress scores were related to parents observing their baby in distress or appearing significantly ill (Table 2). Parents' responses to interpersonal stressors with regard to the environment identified the noise of alarms and machines as most stressful. Furthermore, a personal struggle of separation and helplessness was manifested in scores regarding the parents' relationship with their baby in the NICU (Table 2). These findings are consistent with earlier studies evaluating internal stressors to the NICU family. External stressors were more varied and surrounded separation from the baby at maternal discharge and the day-to-day obligations of parents toward their other children and jobs (Table 2). Stress-reduction scores were strongest in the realm of preexisting support systems of family and friends, and, interestingly, a new support system of families that had had a similar NICU experience (Table 2). These questions and the responses improved caregiver awareness of parental stressors in the NICU and new approaches to stress management for families. A pilot program to respond to the identified coping technique of parent-to-parent contact was instituted using scrapbooking as an activity to bring former and current NICU parents together. This approach was preferred by families, as neither the former nor the current NICU parents wanted a formal counseling session. This approach was most productive in offering parents one stress-reduction technique that could be instituted and fostered by hospital staff. During these ongoing parent sessions, speaking to other parents with babies in the NICU was found to be a very effective individual strategy. In addition, this approach increased caregiver awareness of parental stress and was used to develop a new practice for parents to cope with the internal and external stressors in the NICU.
Families who are expecting a baby have preconceived thoughts about the birth and future of their child. For NICU parents, fantasies fade and plans start to unravel as they find themselves dealing with fear and uncertainty. Parents try to cope but are often unprepared for this experience. Parents in the NICU can feel overwhelmed and experience hopelessness and despair. "Establishing strong, trusting, therapeutic relationships is essential if nurses are to provide effective family-centered care to infants and their families."13 A trusting relationship between families and the health care team is essential for reducing parental stress.
A review of the literature demonstrates that multiple studies have evaluated internal stressors and long-term effects of the NICU journey. The lack of data regarding external stressors strongly supports the need to implement an assessment of outside stressors that affect the NICU parents' experience. Once stressors have been identified, interventions can be developed to improve the family-centered approach to care. The importance of supporting parents during their infant's hospitalization cannot be overestimated. Attention needs to be paid to the external factors as well as the internal factors. As caregivers, we need to continue to expand our knowledge. The information gained will allow the holistic, family-centered philosophy to flourish. With stressors identified, strategies can be implemented to establish preventive interventions at the primary, secondary, and tertiary levels of care as parents and their infants transition from the NICU to the home environment and back into the community. v
Special thanks to our research administrative assistant, Barbara Tidwell.
Leslie Parker, ELS, provided editorial assistance.
The 2006 Innovators' Circle Research Grant award of $7000 was used to support the research reported in this article: the research was supported by Abington Memorial Hospital, Abington, PA. The project is the recipient of The Permanente Journal 2009 Service Quality Award.
1. American Psychiatric Association. Diagnostic and statistical manual of mental disorders. 4th ed. Arlington, VA: American Psychiatric Association; 2000.
2. Peebles-Kleiger MJ. Pediatric and neonatal intensive care hospitalization as traumatic stressor: implication for intervention. Bull Menninger Clin 2000 Spring;64(2):257-80.
3. Holditch-Davis D, Bartlett TR, Blickman AL, Miles MS. Posttraumatic stress symptoms in mothers of premature infants. J Obstet Gynecol Neonatal Nurs 2003 Mar-Apr;32(2):161-71. DOI: https://doi.org/10.1177/0884217503252035
4. Reid T, Bramwell R, Booth N, Weindling A. A new stressor scale for parents experiencing neonatal intensive care: the NUPS (Neonatal Unit Parental Stress) scale. J Reprod Infant Psychol 2007 Feb;25(1):66-82. DOI: https://doi.org/10.1080/02646830601117258
5. Nicolaou M, Rosewell R, Marlow N, Glazebrook C. Mother's experiences of interacting with their premature infants. J Reprod Infant Psychol 2009 May;27(2):182-94. DOI: https://doi.org/10.1080/02646830801922796
6. Obeidat HM, Bond EA, Callister LC. The parental experience of having an infant in the newborn intensive care unit. J Perinat Educ 2009 Summer;18(3):23-9. DOI: https://doi.org/10.1624/105812409X461199
7. 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 Nov;118(5):e1414-27. DOI: https://doi.org/10.1542/peds.2005-2580
8. Ruddle T. ‘Being on the other side': a mother's experience of intensive care. Paediatr Nurs 2006 May;18(4):27-8.
9. Zelkowitz P, Papageorgiou A. Maternal anxiety: an emerging prognostic factor in neonatology. Acta Paediatr 2005 Dec;94(12):1704-5. DOI: https://doi.org/10.1111/j.1651-2227.2005.tb01840.x
10. Redshaw M. Infants in a neonatal intensive care unit: parental response. Arch Dis Child Fetal Neonatal Ed 2005 Mar;90(2):F96. DOI: https://doi.org/10.1136/adc.2004.055426
11. Manning J. Building trust with families in neonatal intensive care units: nurses working in neonatal intensive care units must understand and respect parents' expectations and needs if they are to help families to trust and participate in the care their infants receive. N Z Nurs J 2006 Jul;12(6):18-20.
12. Dryer KA. Identifying, understanding, and working with grieving parents in the NICU, part II: strategies. Neonatal Netw 2005 Jul-Aug;24(4):27-40.
13. McAllister M, Dionne K. Partnering with parents: establishing effective long-term relationships with parents in the NICU. Neonatal Netw 2006 Sep-Oct;25(5):329-37. DOI: https://doi.org/10.1891/0730-0822.214.171.1249
14. Penticuff JH, Arheart KL. Effectiveness of an intervention to improve parent-professional collaboration in neonatal intensive care. J Perinat Neonatal Nurs 2005 Apr-Jun;19(2):187-202.
15. Howland LC. Preterm birth: implications for family stress and coping. Newborn Infant Nurs Rev 2007 Mar;7(1):14-9. DOI: https://doi.org/10.1053/j.nainr.2006.12.008
16. Jotzo M, Poets CF. Helping parents cope with the trauma of premature birth: an evaluation of a trauma-preventive psychological intervention. Pediatrics 2005 Apr;115(4):915-9. DOI: https://doi.org/10.1542/peds.2004-0370
17. Spear ML, Leef K, Epps S, Locke R. Family reactions during infants' hospitalization in the neonatal intensive care unit. Am J Perinatol 2002 May;19(4):205-13. DOI: https://doi.org/10.1055/s-2002-28484
18. Miles MS, Fund SG, Carlson J. Parental Stressor Scale: neonatal intensive care unit. Nurs Res 1993 May-Jun;42(3):148-52. DOI: https://doi.org/10.1097/00006199-199305000-00005
19. Reid T, Bramwell R. Using the parental stressor scale: NICU with a British sample of mothers of moderate risk preterm infants. J Reprod Infant Psychol 2003 Nov;21(4):279-91. DOI: https://doi.org/10.1080/02646830310001622114
20. Bellini S. NICU families and PTSD: handle with care. Nurs Womens Health 2009 Oct;13(5):422-6. DOI: https://doi.org/10.1111/j.1751-486X.2009.01461.x
21. Miles MS, Mathes M. Preparation of parents for the ICU experience: what are we missing? Child Health Care 1991 Summer;20(3):132-7. DOI: https://doi.org/10.1207/s15326888chc2003_1
22. Preyde M, Ardal F. Effectiveness of a parent "buddy" program for mothers of very preterm infants in a neonatal intensive care unit. CMAJ 2003 Apr 15;168(8):969-73.
23. Melnyk BM, Feinstein NF, Fairbanks E. Effectiveness of informational/behavioral interventions with parents of low birth weight (LBW) premature infants: an evidence base to guide clinical practice. Pediatr Nurs 2002 Sep-Oct;28(5):511-6.
24. Tomey AM, Alligood MR. Nursing theorists and their work. 6th ed. Maryland Heights, MO: Mosby; 2006.