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Parents’ perceptions of their infant's pain experience in the NICU
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International Journal of Nursing Studies 41 (2004) 51–58
Parents’ perceptions of their infant’s pain experience in the NICU Gay Galea,b,*, Linda S. Franckc, Susan Koolsd, Mary Lynche a Intensive Care Nursery, Children’s Hospital & Research Center, Oakland, CA, USA Newborn Intensive Care Unit, Alta Bates Summit Medical Center, Berkeley, CA, USA c Children’s Nursing Research Studies, Centre for Nursing and Allied Health Professions Research, Level 7 Old Building, Great Ormond Street Hospital for Children NHS Trust, London WC1N 3JH, UK d Department of Family Health Care Nursing, University of California, San Francisco, 2 Koret Way, Rm N411Y Box 0606, San Francisco, CA 94143, USA e Department of Family Health Care Nursing, University of California, San Francisco, 2 Koret Way, Rm N411Y Box 0606, San Francisco, CA 94143, USA b
Received 10 December 2002; received in revised form 28 May 2003; accepted 29 May 2003
Abstract Despite numerous advances in the recognition, assessment, and management of pain in neonates over the past two decades, there has been limited improvement in the knowledge base regarding parental responses to their infant’s pain. This study examined parents’ views of their experiences observing and coping with their infant’s pain in the neonatal intensive care unit (NICU). Twelve participants were recruited using purposive sampling from two groups: (a) parents who had infants currently receiving care in the NICU (n ¼ 6); and (b) parents whose infants had been discharged from the NICU and were enrolled in the outpatient follow-up clinic at each hospital (n ¼ 6). An exploratory, semi-structured format was used to interview parents individually (n ¼ 5) or in focus groups (n ¼ 7) regarding their infant’s clinical course, infant pain experiences, and the parenting experience during and after the NICU stay. Thematic content analysis was used to develop conceptual categories. Two broad themes were identified: (a) infant pain as a source of parental distress and (b) relief of parental distress due to infant’s pain. r 2003 Elsevier Ltd. All rights reserved. Keywords: Neonatal intensive care unit; Parent perceptions; Infant pain; Parental stress; Infant developmental specialist
1. Introduction One of the most stressful experiences reported by parents of infants in the neonatal intensive care unit (NICU) is seeing their infant experience pain (Brunssen and Miles, 1996; Miles and Holditch-Davis, 1997; Miles et al., 1993). Memories of the infant’s pain and the mothers’ inability to protect the infant from pain may continue to be a source of stress long after their infant’s discharge from the NICU (Wereszczak et al., 1997). *Corresponding author. 535 Pierce St. 2204, Albany, CA 94706-1055, USA. E-mail address: [email protected] (G. Gale).
The inability to protect the infant from pain is an example of an alteration in the parenting role and represents another major source of stress for parents in the NICU (Gale and Franck, 1998; Miles et al., 1993; Phillips, 1995). The most commonly reported responses of parents to this profound change in their expected role are feelings of anxiety, helplessness and loss of control, fear, uncertainty, and worry about their infant’s outcome. Involvement in their infant’s care while hospitalized in the NICU helps to decrease stress related to loss of the parenting role by contributing to feelings of competency and healthy adaptation to parenting (Ward, 2001; Klaus and Kennell, 2001; Haut et al., 1994). Research with
0020-7489/03/$ - see front matter r 2003 Elsevier Ltd. All rights reserved. doi:10.1016/S0020-7489(03)00096-8
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pediatric patients indicates that parents want to participate in comfort measures and decision-making regarding their child’s pain management (Simons et al., 2001; Tait et al., 2001). However, there has been little research that specifically examines the involvement of parents in pain care of infants in the NICU. Therefore, as part of an ongoing program of research to investigate parental involvement in infant pain care, the aim of this qualitative study was to explore parental perceptions of their infant’s pain and pain management in the NICU.
2. Methods The study used an exploratory descriptive design, with semi-structured interviews and thematic content analysis to describe the complex experience of parent participants and the meaning they ascribe to this experience (Boyatzis, 1998; Neuendorf, 2002). Using this process, dominant themes were systematically discovered through careful examination of the data so that parent experiences with their infants’ pain in the NICU context could be better understood. The sources of data were focus groups and individual interviews with parents of infants who were currently hospitalized in two NICUs and parents whose infants had been discharged from the NICU within the past 2 years. Focus group methodology was preferred as an interview technique because the interaction of participants stimulated the expression of memories, ideas, and experiences (Morgan, 1996). However, limited numbers of participants available for focus group interviews necessitated that some individual interviews be conducted as well as group interviews. 2.1. Setting and participants The sample was recruited from two NICUs in London (UK). The local research ethics committees of the two hospitals approved the study. Study participants (n ¼ 12) were recruited using purposive sampling from two groups: (a) parents who had infants currently receiving care in the NICU (n ¼ 6); and (b) parents whose infants had been discharged from the NICU and were enrolled in the outpatient follow-up clinic at each hospital (n ¼ 6). The two groups were specifically selected in order to explore similarities and/or differences in the views of parents at the two different time points. Inclusion criteria for parents of infants currently hospitalized in the NICU were: (1) parent able to visit their infant on at least one occasion prior to participating in the study; (2) parent able to read and write English; and (3) parent indicates that the infant has experienced pain while in the NICU. The inclusion criteria for parents of outpatient infants were: (1) infant
was hospitalized in the NICU following birth and (2) parent able to read and write English.
2.2. Data collection and analysis Information about the study was left at the bedside for the parents of infants in the NICU or mailed to the parents of all infants prior to routine neonatal follow up appointments. If parents indicated interest in participating in the study, an interview appointment was arranged. All parents were assured that study participation was voluntary and that a decision not to participate would not affect their infant’s care. Written consent was obtained from all study participants prior to the interview. The interviews were all conducted by the same investigator (GG), a neonatal nurse with extensive clinical expertise in neonatal nursing, developmental and family centered care. An interview guide was used to introduce the purpose of the interview in a consistent manner. The interviewer first obtained basic demographic information about the parent and clinical information about the infant’s medical course. She next described to parents some of the views about infant pain of other parents’ from a recently completed survey study (Franck et al., in review) and asked parents to comment if they had similar or dissimilar experiences. Then parents were asked more specifically about their own experiences. Parents of discharged infants were also asked about their experiences with their infant’s pain experience following discharge. Lastly, parents were asked to give their views on strategies to improve infant pain care and about their willingness to participate in randomized trials research to test the strategies. The findings related to these aspects of the interview are reported elsewhere (Franck et al., manuscript in preparation). The focus group sessions and interviews lasted 60– 90 min and were videotaped for later transcription and analysis. Two interviews were recorded by audiotaping instead of videotaping by parental request. Field notes were taken to describe the context and nature of the participant interactions in the focus groups. Clinical and demographic information were also obtained from the infant’s medical record. Thematic content analysis is a process for systematically encoding qualitative information and was used to analyze focus group and individual interviews (Boyatzis, 1998; Neuendorf, 2002). Data were expanded in conceptual themes via open coding without regard for relative importance. In this way, the breadth of conceptual possibilities across interviews was appreciated. Following data expansion and saturation, conceptual categories of themes that were salient across participants were created. Each category was given a
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definition and significant verbatim quotes that exemplified the theme were noted.
Table 1 Parent demographics Median (range)
2.3. Conceptual and methodological verification Using the constant comparative method of verifying themes across participants, thematic salience was validated to ensure the credibility and applicability of the findings (Strauss and Corbin, 1990). Field notes and clinical and demographic information obtained from the infant’s medical record were also used to assist in interpretation of the context of the parents’ statements To further verify the findings and document auditability of the analysis, the process and products of analysis (e.g. open coding, preliminary categorization schema, and final thematic categories) were reviewed by substantive experts in neonatal pain and family nursing care in the NICU, a qualitative methodologist, and three parents who had infants in the NICU (Lincoln and Guba, 1994).
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Age
36 (26–43)
Ethnicity White Black Asian
n 9 2 1
(%) (75) (17) (8)
Education University GCEa Foreign Unknown
5 3 1 3
(42) (25) (8) (25)
Employment Work outside the home Homemaker Unknown
5 (42) 4 (33) 3 (25)
a
GCE: General certificate of education.
3. Findings There were eleven mothers and one father in the sample. For one infant, both parents participated in separate interviews. Of the remaining ten mothers, two had one set of twins each, bringing the total number of infants to 13 (Tables 1 and 2). At the time of the interview, the median age of the parents was 36 years. Eleven infants were preterm (less than 37 weeks gestation) and two were full term (38–42 weeks gestation). Median gestational age was 31 weeks. Hospital stay ranged from 11 days to approximately 2 months. The median length of stay was 3 weeks. Among the six discharged infants, the length of time since discharge ranged from 2 months to 2 years. Parents described their perceptions of the infant’s pain, how the NICU staff managed their infant’s pain, and how they coped with this experience. Constant comparative analysis revealed two broad themes into which almost all of the parents’ experiences could be categorized: (a) infant pain as a source of parental stress; and (b) relief of parental stress due to infant’s pain. The data illustrations below are representative of these prevalent themes (see Tables 3 and 4) across interviews from the total data set of 12 parent interviews. Thematic salience across the sample was confirmed using the constant comparative method (Strauss and Corbin, 1990). 3.1. Infant pain as a source of parental stress Eleven of the twelve parents in this study explicitly identified their infant’s pain as a source of psychological stress. They described feeling of sadness, worry, helplessness, disappointment, anger, fear, frustration, and
Table 2 Infant characteristics Median (range) Gestational age (weeks)
32 (25–42)
Apgar scores: 1 min 5 min
n (%) 8 (2–10) 9.5 (8–10)
Primary diagnosisa Preterm CHD NAS IUGR
10 (76%) 1 (8%)) 1 (8%) 1 (8%)
Pain medications Morphine sulfate Paracetamol None Unknown
2 1 6 4
(15%) (8%) (46%) (31%)
a CHD: Congestive heart disease; NAS: Neonatal abstinence syndrome; IUGR: Intrauterine growth retardation.
guilt as a direct result of seeing or knowing that their infant experienced pain. Parents were able to identify and describe specific components of the stress they experienced resulting from their infant’s pain. These descriptions formed thematic subcategories of: parents’ unpreparedness for infant pain, the impact of painful procedures, mismatch between parent and staff perceptions of infant pain, and the inability to fulfill the parental protective role (Table 3).
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Table 3 Infant pain as a source of parental stress Category
Subcategory
Concepts
Infant pain as a source of parental stress
Inability to protect infant
Distress related to frustrated desires to comfort/protect infant
Mismatch between parent and staff perceptions of infant pain
Negative observations of staff responses to pain, inconsistencies in care by staff, lack of sensitivity to parent’s experiences Severity of illness, jealousy of nurses’ greater competencies, desire for more support from staff, not knowing how to help baby Distress related to procedures which cause pain to infant, evidence of tissue damage, baby’s responses to pain, inexperienced staff, anxiety related to providing support to infant during painful procedures Distress related to methods of pain management, procedures/ conditions causing pain, desire for more/less information
Barriers to parental role attainment Impact of painful procedures
Unpreparedness for infant pain
Table 4 Relief of parental stress related to infant pain Category
Subcategory
Concepts
Relief of parental distress related to infant pain
Staff support
In NICU: Early encouragement for participation in care and advocacy for pain care by staff nurses. Helpful techniques/ interventions demonstrated by developmental specialists. Post-discharge: Reassurance and support from home visiting nurses Distress decreased by participation in pain care
Involvement in parenting in the NICU Information resources
3.1.1. Unpreparedness for infant pain All parents in this study stated they did not expect their infant to experience pain as part of their NICU care and all but one parent stated they saw their infant have pain. Many parents spoke about not being prepared to see their infant’s pain, as illustrated by the following comments, I wasn’t prepared to see her in pain. I think they [staff] were shielding me from the truth. They [staff] told me she was on morphine and I asked ‘Why is she on morphine?’’ They said it was because of her breathing tube. It was the first time I realized she had pain. Seven parents felt they needed more information about their infant’s health needs and medical care, including pain care, early in the hospitalization and were frustrated by having to seek it out from the staff. Others felt too overwhelmed by the NICU to absorb new information. Parents reflected:
Internet provided information and support from other parents. Written materials from developmental specialists supported role attainment
It would have helped me to get this information very early; I like to know and understand what is going on. The onus is on the parents to get the hospital [staff] to explain what they are doing. I had trouble taking the information inyI was totally focussed on the baby. Ignorance is blissybut you have to know how to help your baby. Whereas parents uniformly expressed feeling unprepared for infant pain, there were differences in the parents’ preferences for information about infant pain that seemed to indicate individual variations in stress and coping. 3.1.2. The impact of painful procedures Parents described procedures that caused their infant to experience pain and were stressful to parents. Painful
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procedures identified by parents in this study were blood tests, insertion and maintenance of breathing tubes, intravenous (IV) lines, injections, eye examinations, lumbar punctures (LP), surgery, and the infant’s inability to move freely because of IV splints. Eleven of the twelve parents stated that they saw their infant experience pain or saw evidence of tissue damage resulting from ‘‘needle pricks’’. Four parents discussed feeling distressed by seeing multiple needle pricks, and indicated that their infant experienced unnecessary pain from unsuccessful attempts to draw blood or start an IV. Two parents expressed anger because they believed a less experienced nurse made multiple attempts to place an IV on their infant when an experienced nurse could have placed the IV in one attempt. As one mother said, I remember how painful it was for my IVywhen I saw his hand and saw all the pinpricks I wondered how much pain he’d had. [It was] hard to see the nurses trying for over an hour to get the IV. Whether to stay or leave during a painful procedure caused distress for two of the parents. However, parents generally felt it was very important for the infant to have a parent with them during painful procedures. One mother recounted, I force myself to stay there during painful procedures. I try to comfort him by talking or touching his head. Another mother experienced less distress because her husband was able to be with the infant during painful procedures: I did not want to be with my baby during painful procedures; it was too upsetting. My husband could handle it, so I would leave and have him stay. He was very helpful. Perceptions of the infant’s pain experience were influenced by severity of illness, with greater distress related to infant pain reflected in the comments of parents whose infants’ illness or prematurity necessitated greater numbers of painful procedures. 3.1.3. Mismatch between parent and staff perceptions of infant pain Parents experienced stress when their perceptions about the infant’s pain conflicted with those of the NICU staff. Overall, parents felt that the staff disregarded or minimized their infant’s pain, as illustrated by the following quotes from parents. I saw her wince. Someone said, ‘Oh, she doesn’t feel it’. And I thought, what do you mean? Of course she feels it.
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The splints on his arms were disturbing him, as was the tape on his face. The nurses didn’t appreciate how uncomfortable this must feel to him. Many of the parents expressed concern about inconsistencies among staff in their treatment of infant pain. Some of the parents were particularly concerned about the lack of staff responsiveness to the comfort needs of infants. One mother observed, Sometimes nurses did not respond to crying babiesyit upset me to think they would not comfort my son when I was not there. Another mother suggested a reason for the lack of staff responsiveness, There were not enough nurses, and they did not help each other. The nurses did not look after them (twins) in a timely wayythat’s why they were uncomfortable. All the parents in this study wanted the staff, especially the nurses, to see and respond to their infant as they would. Concern that staff would not respond to their infant’s pain signals in the parent’s absence was uniformly stressful. 3.1.4. Inability to fulfill the parental protective role All parents appeared to view prevention and relief of infant pain as a central component of their parental role. One mother said, I want to wrap him up when he gets home and keep him from having any more pain. However, parents felt dependent on the NICU staff to learn about their infant’s behavior and how best to respond. Some parents felt insecure about their abilities to care for their infant’s pain, particularly in the first few days after admission to the NICU, but felt a strong desire to participate in the infant’s care. When you see the baby in pain, at first you hesitate, watch what the nurses do, then you want to do it yourself. Other parents continued to defer to the staff regarding their infant’s behavior and care needs. I don’t feel like I know him as well as the nursesynurses see his signs and understand better. Most of the parents experienced stress because of their inability to care for and, in particular, to comfort their infant in the NICU. This occurred irrespective of whether parents perceived they were unable to provide comfort to their infant or were prevented from doing so by the staff. The concerns about infant pain and the consequent stress experienced by parents were similarly described for parents whose infants were currently
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receiving care in the NICU and those whose infants had been discharged. There was no discernable difference in perspectives of those parents looking back on the experience and those in the midst of it. Some of the parents of the discharged infants indicated that they continued to experience stress related to not being able to determine if their infant was crying due to pain or a milder source of distress, such as hunger.
at home than in the NICU. Home visiting nurses were identified as a source of reassurance and support during the transition to home.
3.2. Relief of parental stress due to infant pain
3.2.2. Involvement in parenting in the NICU As parents’ participation in their infant’s care increased, stress related to the inability to assume the parenting role, particularly protecting the infant from pain, appeared to decrease. Two mothers described feelings of relief related to knowing their infant best and knowing how best to reduce the infant’s pain.
Parents in this study predominantly described their infant’s pain experience as a source of stress for themselves. However, relief from this stress was also readily described, especially by the parents whose infants were recovering from acute illness or had been discharged. Feelings related to relief of parental stress were hope, joy, confidence, and expressions of positive self-esteem. Parents were able to identify and describe specific sources of relief from the stress they experienced resulting from their infant’s pain. These descriptions formed subcategories of: staff support, involvement in parenting in the NICU, and information resources (Table 4). 3.2.1. Staff support Parents reported that NICU nurses, home visiting nurses, and infant development specialists were helpful in relieving parental feelings of stress related to their infant’s pain. Five parents stated that nurses in the NICU provided relief from distress by giving early encouragement for participation in pain care, advocating for the infant’s pain care with the doctors, and as a source of emotional support. Staff support was described in a variety of ways, You need to have someone to stand behind you initially and teach you about his wires, etc. Then later you need to be left alone. Nurses advocated for my baby’s well being with the doctorsythey saw when something was different or wrong and told the doctors. The comforting techniques and other behavioral interventions taught to parents by the developmental specialists in one of the NICUs provided parents with relief from distress related to the infant’s pain. They [staff] didn’t tell me about the eye examyI went to the internet and got information which I told Elizabeth [the developmental specialist]. She had suggestions for strategies like swaddling and giving the baby a dummy [pacifier] to suck and that made all the difference. Four parents in this study were surprised that they were more stressed by their infant’s pain and discomfort
She screamed for the first three weeks [after discharge]. I got good follow-up from the home visiting nurse and the family centre. She slept for only two hours a day. I was grateful for the support.
It freaked me out when he first turned blueynow I just turn up the oxygen. I think it’s the same when you see the baby in painyyou get more confident with what to do. 3.2.3. Information resources Parents identified the Internet as a source of relief from the stress related to their information needs about the management of infant pain. Two parents discussed how helpful the Internet was for finding support from other parents with similar experiences in the NICU. I lived for the support I got from other parents on the Internet. The trouble with the computer is that you can only use it at home, not in the hospital when you want to be near your baby. Additionally, all parents who worked with the developmental specialists in one of the NICUs mentioned that the written materials provided by them were helpful in decreasing stress related to not knowing how to help the infant. Parents of infants who had been discharged from the NICU did not differ from the parents of the inpatient infants in their recall of sources of relief from parental stress due to infant pain.
4. Discussion The findings from this study expand our understanding of parents’ experiences related to their infant’s pain in the NICU. The findings of this and other studies (Franck et al., 2001; Miles et al., 1992, 1993, 1996; Werceszczak et al., 1997) indicate infant pain is a source of stress for parents in the NICU. Inability to perform the normal parenting role appears to be the predominant source of stress regarding the infant’s pain experience described by the parents in this study. Parents’ struggles with role alteration are manifested in
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every subcategory of both the sources of stress and relief from stress. The findings of unmet parental needs to protect and support the baby, feelings of loss of control and competition with nurses, and mismatched perceptions with staff concur with findings previously documented in the literature (Bass, 1991; Griffin, 1990; Griffin et al., 1998; Klaus and Kennell, 2001; McNeil, 1992; Miles et al., 1992, 1993). The finding that staff can be both a source of stress and a source of relief from stress has been reported in prior research (Holditch-Davis and Miles, 2000; Miles et al., 1993; Werceszczak et al., 1997). Watt-Watson et al. (1990) found that parents’ perceptions of their child’s acute pain experience were influenced by their involvement with their child’s pain care. The positive impact of the developmental specialists described by four of the six mothers in one NICU suggests that staff assistance to increase parental knowledge and involvement may be similarly effective in relieving parental stress related to infant pain. These mothers were able to readily discuss the awareness and management of their infant’s pain and discomfort cues, and they also seemed to be more comfortable about themselves as mothers. The mothers reported that the developmental specialists provided both assurance and information, two of the highest ranked needs among parents of infants in the NICU (Ward, 2001). More research is needed to understand the impact of interventions by staff to support development of the protective parenting role in the NICU and to investigate specific ways the staff can reduce parental stress related to their infant’s pain. Parents who participated in this study were open and eager to talk about their feelings related to experiences in the NICU. This may indicate the need for ‘‘debriefing’’, as suggested by Miles and Holditch-Davis (1997), which may be helpful to parents in understanding the impact of their NICU experience on their developing relationship with their child and their transition to parenting. Further study is indicated to understand how opportunities for debriefing during and after the NICU experience may help parents’ in dealing with issues arising from their infant’s pain and pain care. 4.1. Implications for clinical practice Applicability of the findings from this study to clinical practice is limited by a small sample from two NICUs in the same locale. Despite these limitations, this study offers important implications for healthcare providers. Staff can anticipate that parents may experience stress related to their infant’s pain. Parents may not expect to see their infant have pain in the NICU, may be unprepared to witness painful procedures being performed on their infant, and may have particular concerns about not being able to protect their infant
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from pain. NICU staff can be a source of relief from these stressors by acknowledging and encouraging expression of parental concerns, providing information and anticipatory guidance regarding infant responses to pain and pain management, and showing compassionate care to the infant and emotional support for parents. Staff should also provide access to other sources of information and most importantly encourage and support early involvement in infant care that increases over time.
Acknowledgements The authors gratefully acknowledge the support of the staff and administration of the Neonatal Unit and Children’s Outpatients Departments of Guy’s & St. Thomas’ Hospital Trust, and the Winicott Baby Unit and Children’s Outpatient Clinic at St. Mary’s Hospital Trust, both in London, England and, in particular, wish to thank Susanne Cox, Research Co-ordinator School of Nursing & Midwifery, King’s College London, and Inga Warren, Dip. COT, MSc, Neonatal Development Specialist and Jeannine Pompon, Sister, Winicott Baby Unit for their assistance with parent recruitment for this project. We wish to thank the parents who participated in this study for sharing their experiences and insights.
References Bass, L.S., 1991. What do the parents need when their infant is a patient in the NICU? Neonatal Network 10 (4), 25–33. Boyatzis, R.E., 1998. Transforming Qualitative Information: Thematic Content Analysis and Code Development. Sage Publications, Thousand Oaks, CA. Brunssen, S.H., Miles, M.S., 1996. Sources of environmental stress experienced by mothers of hospitalized medically fragile infants. Neonatal Network 15 (3), 88–89. Franck, L., Scurr, K., Couture, S., 2001. Parent views of infant pain and pain management in the neonatal intensive care unit. Newborn and Infant Nursing Reviews 1 (2), 106–113. Gale, G., Franck, L.S., 1998. Toward a standard of care in the neonatal intensive care unit. Critical Care Nurse 18 (5), 62–74. Griffin, T., 1990. Nurse barriers to parenting in the special care nursery. Journal of Perinatal and Neonatal Nursing 4 (2), 56–67. Griffin, T., Wishba, C., Kavanaugh, K., 1998. Nursing interventions to reduce stress in parents of hospitalized preterm infants. Journal of Pediatric Nursing 13 (5), 290–295. Haut, C., Peddicord, K., O’Brien, E., 1994. Supporting parental bonding in the NICU: a care plan for nurses. Neonatal Network 13 (8), 19–25. Holditch-Davis, D., Miles, M.S., 2000. Mother’s stories about their experiences in the neonatal intensive care unit. Neonatal Network 19 (3), 13–21.
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Klaus, M.H., Kennell, J.H., 2001. Care of the mother, father, and infant. In: Fanaroff, A.A., Martin, R.J. (Eds.), Neonatal-Perinatal Medicine, 5th Edition. C.V. Mosby, St. Louis MO, pp. 199–222. Lincoln, Y.S., Guba, E.G., 1994. Naturalistic Inquiry. Sage Publications, Thousand Oaks, CA. McNeil, D., 1992. Uncertainty, waiting, and possibilities: experiences of becoming a mother with an infant in the NICU. Neonatal Network 11 (7), 78. Miles, M., Holditch-Davis, D., 1997. Parenting the prematurely born child: pathways of influence. Seminars in Perinatalogy 21 (3), 254–266. Miles, M.S., Funk, S.G., Kasper, M.A., 1992. The stress response of mothers and fathers of preterm infants. Research in Nursing and Health 15, 261–269. Miles, M.S., Funk, S.G., Carlson, J., 1993. Parent stressor scale: neonatal intensive care unit. Nursing Research 42 (3), 148–152. Miles, M.S., Carlson, J., Funk, S.G., 1996. Sources of support reported by mothers & fathers in a neonatal intensive care unit. Neonatal Network 15 (3), 45–52. Morgan, D.L., 1996. Focus groups. Annual Review of Sociology 22, 129–152.
Neuendorf, K.A., 2002. The Content Analysis Guidebook.. Sage Publications, Thousand Oaks, CA. Phillips, P., 1995. Neonatal pain management: a call to action. Pediatric Nursing 21 (2), 195–199. Tait, A.R., Voepel-Lewis, T., Munro, H.M., Malviya, S., 2001. Parents’ preferences for participation in decisions made regarding their child’s anaesthetic care. Paediatric Anaesthesia 11, 283–290. Simons, J., Franck, L., Roberson, E., 2001. Parent involvement in children’s pain care: views of parents and nurses. Journal of Advanced Nursing 36 (4), 591–599. Strauss, A., Corbin, J., 1990. Basics of Qualitative Research: Grounded Theory Procedures and Techniques. Sage Publications, Thousand Oaks, CA. Ward, K., 2001. Perceived needs of parents of critically ill infants in a neonatal intensive care unit (NICU). Pediatric Nursing 27 (3), 281–286. Watt-Watson, J.H., Everndon, C., Lawson, C., 1990. Parents’ perceptions of their child’s acute pain experience. Journal of Pediatric Nursing 5 (5), 344–349. Wereszczak, J., Miles, M.S., Holditch-Davis, D., 1997. Maternal recall of the neonatal intensive care unit. Neonatal Network 16 (4), 33–40.
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Parents’ perceptions of their infant’s pain experience in the NICU Gay Galea,b,*, Linda S. Franckc, Susan Koolsd, Mary Lynche a Intensive Care Nursery, Children’s Hospital & Research Center, Oakland, CA, USA Newborn Intensive Care Unit, Alta Bates Summit Medical Center, Berkeley, CA, USA c Children’s Nursing Research Studies, Centre for Nursing and Allied Health Professions Research, Level 7 Old Building, Great Ormond Street Hospital for Children NHS Trust, London WC1N 3JH, UK d Department of Family Health Care Nursing, University of California, San Francisco, 2 Koret Way, Rm N411Y Box 0606, San Francisco, CA 94143, USA e Department of Family Health Care Nursing, University of California, San Francisco, 2 Koret Way, Rm N411Y Box 0606, San Francisco, CA 94143, USA b
Received 10 December 2002; received in revised form 28 May 2003; accepted 29 May 2003
Abstract Despite numerous advances in the recognition, assessment, and management of pain in neonates over the past two decades, there has been limited improvement in the knowledge base regarding parental responses to their infant’s pain. This study examined parents’ views of their experiences observing and coping with their infant’s pain in the neonatal intensive care unit (NICU). Twelve participants were recruited using purposive sampling from two groups: (a) parents who had infants currently receiving care in the NICU (n ¼ 6); and (b) parents whose infants had been discharged from the NICU and were enrolled in the outpatient follow-up clinic at each hospital (n ¼ 6). An exploratory, semi-structured format was used to interview parents individually (n ¼ 5) or in focus groups (n ¼ 7) regarding their infant’s clinical course, infant pain experiences, and the parenting experience during and after the NICU stay. Thematic content analysis was used to develop conceptual categories. Two broad themes were identified: (a) infant pain as a source of parental distress and (b) relief of parental distress due to infant’s pain. r 2003 Elsevier Ltd. All rights reserved. Keywords: Neonatal intensive care unit; Parent perceptions; Infant pain; Parental stress; Infant developmental specialist
1. Introduction One of the most stressful experiences reported by parents of infants in the neonatal intensive care unit (NICU) is seeing their infant experience pain (Brunssen and Miles, 1996; Miles and Holditch-Davis, 1997; Miles et al., 1993). Memories of the infant’s pain and the mothers’ inability to protect the infant from pain may continue to be a source of stress long after their infant’s discharge from the NICU (Wereszczak et al., 1997). *Corresponding author. 535 Pierce St. 2204, Albany, CA 94706-1055, USA. E-mail address: [email protected] (G. Gale).
The inability to protect the infant from pain is an example of an alteration in the parenting role and represents another major source of stress for parents in the NICU (Gale and Franck, 1998; Miles et al., 1993; Phillips, 1995). The most commonly reported responses of parents to this profound change in their expected role are feelings of anxiety, helplessness and loss of control, fear, uncertainty, and worry about their infant’s outcome. Involvement in their infant’s care while hospitalized in the NICU helps to decrease stress related to loss of the parenting role by contributing to feelings of competency and healthy adaptation to parenting (Ward, 2001; Klaus and Kennell, 2001; Haut et al., 1994). Research with
0020-7489/03/$ - see front matter r 2003 Elsevier Ltd. All rights reserved. doi:10.1016/S0020-7489(03)00096-8
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pediatric patients indicates that parents want to participate in comfort measures and decision-making regarding their child’s pain management (Simons et al., 2001; Tait et al., 2001). However, there has been little research that specifically examines the involvement of parents in pain care of infants in the NICU. Therefore, as part of an ongoing program of research to investigate parental involvement in infant pain care, the aim of this qualitative study was to explore parental perceptions of their infant’s pain and pain management in the NICU.
2. Methods The study used an exploratory descriptive design, with semi-structured interviews and thematic content analysis to describe the complex experience of parent participants and the meaning they ascribe to this experience (Boyatzis, 1998; Neuendorf, 2002). Using this process, dominant themes were systematically discovered through careful examination of the data so that parent experiences with their infants’ pain in the NICU context could be better understood. The sources of data were focus groups and individual interviews with parents of infants who were currently hospitalized in two NICUs and parents whose infants had been discharged from the NICU within the past 2 years. Focus group methodology was preferred as an interview technique because the interaction of participants stimulated the expression of memories, ideas, and experiences (Morgan, 1996). However, limited numbers of participants available for focus group interviews necessitated that some individual interviews be conducted as well as group interviews. 2.1. Setting and participants The sample was recruited from two NICUs in London (UK). The local research ethics committees of the two hospitals approved the study. Study participants (n ¼ 12) were recruited using purposive sampling from two groups: (a) parents who had infants currently receiving care in the NICU (n ¼ 6); and (b) parents whose infants had been discharged from the NICU and were enrolled in the outpatient follow-up clinic at each hospital (n ¼ 6). The two groups were specifically selected in order to explore similarities and/or differences in the views of parents at the two different time points. Inclusion criteria for parents of infants currently hospitalized in the NICU were: (1) parent able to visit their infant on at least one occasion prior to participating in the study; (2) parent able to read and write English; and (3) parent indicates that the infant has experienced pain while in the NICU. The inclusion criteria for parents of outpatient infants were: (1) infant
was hospitalized in the NICU following birth and (2) parent able to read and write English.
2.2. Data collection and analysis Information about the study was left at the bedside for the parents of infants in the NICU or mailed to the parents of all infants prior to routine neonatal follow up appointments. If parents indicated interest in participating in the study, an interview appointment was arranged. All parents were assured that study participation was voluntary and that a decision not to participate would not affect their infant’s care. Written consent was obtained from all study participants prior to the interview. The interviews were all conducted by the same investigator (GG), a neonatal nurse with extensive clinical expertise in neonatal nursing, developmental and family centered care. An interview guide was used to introduce the purpose of the interview in a consistent manner. The interviewer first obtained basic demographic information about the parent and clinical information about the infant’s medical course. She next described to parents some of the views about infant pain of other parents’ from a recently completed survey study (Franck et al., in review) and asked parents to comment if they had similar or dissimilar experiences. Then parents were asked more specifically about their own experiences. Parents of discharged infants were also asked about their experiences with their infant’s pain experience following discharge. Lastly, parents were asked to give their views on strategies to improve infant pain care and about their willingness to participate in randomized trials research to test the strategies. The findings related to these aspects of the interview are reported elsewhere (Franck et al., manuscript in preparation). The focus group sessions and interviews lasted 60– 90 min and were videotaped for later transcription and analysis. Two interviews were recorded by audiotaping instead of videotaping by parental request. Field notes were taken to describe the context and nature of the participant interactions in the focus groups. Clinical and demographic information were also obtained from the infant’s medical record. Thematic content analysis is a process for systematically encoding qualitative information and was used to analyze focus group and individual interviews (Boyatzis, 1998; Neuendorf, 2002). Data were expanded in conceptual themes via open coding without regard for relative importance. In this way, the breadth of conceptual possibilities across interviews was appreciated. Following data expansion and saturation, conceptual categories of themes that were salient across participants were created. Each category was given a
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definition and significant verbatim quotes that exemplified the theme were noted.
Table 1 Parent demographics Median (range)
2.3. Conceptual and methodological verification Using the constant comparative method of verifying themes across participants, thematic salience was validated to ensure the credibility and applicability of the findings (Strauss and Corbin, 1990). Field notes and clinical and demographic information obtained from the infant’s medical record were also used to assist in interpretation of the context of the parents’ statements To further verify the findings and document auditability of the analysis, the process and products of analysis (e.g. open coding, preliminary categorization schema, and final thematic categories) were reviewed by substantive experts in neonatal pain and family nursing care in the NICU, a qualitative methodologist, and three parents who had infants in the NICU (Lincoln and Guba, 1994).
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Age
36 (26–43)
Ethnicity White Black Asian
n 9 2 1
(%) (75) (17) (8)
Education University GCEa Foreign Unknown
5 3 1 3
(42) (25) (8) (25)
Employment Work outside the home Homemaker Unknown
5 (42) 4 (33) 3 (25)
a
GCE: General certificate of education.
3. Findings There were eleven mothers and one father in the sample. For one infant, both parents participated in separate interviews. Of the remaining ten mothers, two had one set of twins each, bringing the total number of infants to 13 (Tables 1 and 2). At the time of the interview, the median age of the parents was 36 years. Eleven infants were preterm (less than 37 weeks gestation) and two were full term (38–42 weeks gestation). Median gestational age was 31 weeks. Hospital stay ranged from 11 days to approximately 2 months. The median length of stay was 3 weeks. Among the six discharged infants, the length of time since discharge ranged from 2 months to 2 years. Parents described their perceptions of the infant’s pain, how the NICU staff managed their infant’s pain, and how they coped with this experience. Constant comparative analysis revealed two broad themes into which almost all of the parents’ experiences could be categorized: (a) infant pain as a source of parental stress; and (b) relief of parental stress due to infant’s pain. The data illustrations below are representative of these prevalent themes (see Tables 3 and 4) across interviews from the total data set of 12 parent interviews. Thematic salience across the sample was confirmed using the constant comparative method (Strauss and Corbin, 1990). 3.1. Infant pain as a source of parental stress Eleven of the twelve parents in this study explicitly identified their infant’s pain as a source of psychological stress. They described feeling of sadness, worry, helplessness, disappointment, anger, fear, frustration, and
Table 2 Infant characteristics Median (range) Gestational age (weeks)
32 (25–42)
Apgar scores: 1 min 5 min
n (%) 8 (2–10) 9.5 (8–10)
Primary diagnosisa Preterm CHD NAS IUGR
10 (76%) 1 (8%)) 1 (8%) 1 (8%)
Pain medications Morphine sulfate Paracetamol None Unknown
2 1 6 4
(15%) (8%) (46%) (31%)
a CHD: Congestive heart disease; NAS: Neonatal abstinence syndrome; IUGR: Intrauterine growth retardation.
guilt as a direct result of seeing or knowing that their infant experienced pain. Parents were able to identify and describe specific components of the stress they experienced resulting from their infant’s pain. These descriptions formed thematic subcategories of: parents’ unpreparedness for infant pain, the impact of painful procedures, mismatch between parent and staff perceptions of infant pain, and the inability to fulfill the parental protective role (Table 3).
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Table 3 Infant pain as a source of parental stress Category
Subcategory
Concepts
Infant pain as a source of parental stress
Inability to protect infant
Distress related to frustrated desires to comfort/protect infant
Mismatch between parent and staff perceptions of infant pain
Negative observations of staff responses to pain, inconsistencies in care by staff, lack of sensitivity to parent’s experiences Severity of illness, jealousy of nurses’ greater competencies, desire for more support from staff, not knowing how to help baby Distress related to procedures which cause pain to infant, evidence of tissue damage, baby’s responses to pain, inexperienced staff, anxiety related to providing support to infant during painful procedures Distress related to methods of pain management, procedures/ conditions causing pain, desire for more/less information
Barriers to parental role attainment Impact of painful procedures
Unpreparedness for infant pain
Table 4 Relief of parental stress related to infant pain Category
Subcategory
Concepts
Relief of parental distress related to infant pain
Staff support
In NICU: Early encouragement for participation in care and advocacy for pain care by staff nurses. Helpful techniques/ interventions demonstrated by developmental specialists. Post-discharge: Reassurance and support from home visiting nurses Distress decreased by participation in pain care
Involvement in parenting in the NICU Information resources
3.1.1. Unpreparedness for infant pain All parents in this study stated they did not expect their infant to experience pain as part of their NICU care and all but one parent stated they saw their infant have pain. Many parents spoke about not being prepared to see their infant’s pain, as illustrated by the following comments, I wasn’t prepared to see her in pain. I think they [staff] were shielding me from the truth. They [staff] told me she was on morphine and I asked ‘Why is she on morphine?’’ They said it was because of her breathing tube. It was the first time I realized she had pain. Seven parents felt they needed more information about their infant’s health needs and medical care, including pain care, early in the hospitalization and were frustrated by having to seek it out from the staff. Others felt too overwhelmed by the NICU to absorb new information. Parents reflected:
Internet provided information and support from other parents. Written materials from developmental specialists supported role attainment
It would have helped me to get this information very early; I like to know and understand what is going on. The onus is on the parents to get the hospital [staff] to explain what they are doing. I had trouble taking the information inyI was totally focussed on the baby. Ignorance is blissybut you have to know how to help your baby. Whereas parents uniformly expressed feeling unprepared for infant pain, there were differences in the parents’ preferences for information about infant pain that seemed to indicate individual variations in stress and coping. 3.1.2. The impact of painful procedures Parents described procedures that caused their infant to experience pain and were stressful to parents. Painful
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procedures identified by parents in this study were blood tests, insertion and maintenance of breathing tubes, intravenous (IV) lines, injections, eye examinations, lumbar punctures (LP), surgery, and the infant’s inability to move freely because of IV splints. Eleven of the twelve parents stated that they saw their infant experience pain or saw evidence of tissue damage resulting from ‘‘needle pricks’’. Four parents discussed feeling distressed by seeing multiple needle pricks, and indicated that their infant experienced unnecessary pain from unsuccessful attempts to draw blood or start an IV. Two parents expressed anger because they believed a less experienced nurse made multiple attempts to place an IV on their infant when an experienced nurse could have placed the IV in one attempt. As one mother said, I remember how painful it was for my IVywhen I saw his hand and saw all the pinpricks I wondered how much pain he’d had. [It was] hard to see the nurses trying for over an hour to get the IV. Whether to stay or leave during a painful procedure caused distress for two of the parents. However, parents generally felt it was very important for the infant to have a parent with them during painful procedures. One mother recounted, I force myself to stay there during painful procedures. I try to comfort him by talking or touching his head. Another mother experienced less distress because her husband was able to be with the infant during painful procedures: I did not want to be with my baby during painful procedures; it was too upsetting. My husband could handle it, so I would leave and have him stay. He was very helpful. Perceptions of the infant’s pain experience were influenced by severity of illness, with greater distress related to infant pain reflected in the comments of parents whose infants’ illness or prematurity necessitated greater numbers of painful procedures. 3.1.3. Mismatch between parent and staff perceptions of infant pain Parents experienced stress when their perceptions about the infant’s pain conflicted with those of the NICU staff. Overall, parents felt that the staff disregarded or minimized their infant’s pain, as illustrated by the following quotes from parents. I saw her wince. Someone said, ‘Oh, she doesn’t feel it’. And I thought, what do you mean? Of course she feels it.
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The splints on his arms were disturbing him, as was the tape on his face. The nurses didn’t appreciate how uncomfortable this must feel to him. Many of the parents expressed concern about inconsistencies among staff in their treatment of infant pain. Some of the parents were particularly concerned about the lack of staff responsiveness to the comfort needs of infants. One mother observed, Sometimes nurses did not respond to crying babiesyit upset me to think they would not comfort my son when I was not there. Another mother suggested a reason for the lack of staff responsiveness, There were not enough nurses, and they did not help each other. The nurses did not look after them (twins) in a timely wayythat’s why they were uncomfortable. All the parents in this study wanted the staff, especially the nurses, to see and respond to their infant as they would. Concern that staff would not respond to their infant’s pain signals in the parent’s absence was uniformly stressful. 3.1.4. Inability to fulfill the parental protective role All parents appeared to view prevention and relief of infant pain as a central component of their parental role. One mother said, I want to wrap him up when he gets home and keep him from having any more pain. However, parents felt dependent on the NICU staff to learn about their infant’s behavior and how best to respond. Some parents felt insecure about their abilities to care for their infant’s pain, particularly in the first few days after admission to the NICU, but felt a strong desire to participate in the infant’s care. When you see the baby in pain, at first you hesitate, watch what the nurses do, then you want to do it yourself. Other parents continued to defer to the staff regarding their infant’s behavior and care needs. I don’t feel like I know him as well as the nursesynurses see his signs and understand better. Most of the parents experienced stress because of their inability to care for and, in particular, to comfort their infant in the NICU. This occurred irrespective of whether parents perceived they were unable to provide comfort to their infant or were prevented from doing so by the staff. The concerns about infant pain and the consequent stress experienced by parents were similarly described for parents whose infants were currently
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receiving care in the NICU and those whose infants had been discharged. There was no discernable difference in perspectives of those parents looking back on the experience and those in the midst of it. Some of the parents of the discharged infants indicated that they continued to experience stress related to not being able to determine if their infant was crying due to pain or a milder source of distress, such as hunger.
at home than in the NICU. Home visiting nurses were identified as a source of reassurance and support during the transition to home.
3.2. Relief of parental stress due to infant pain
3.2.2. Involvement in parenting in the NICU As parents’ participation in their infant’s care increased, stress related to the inability to assume the parenting role, particularly protecting the infant from pain, appeared to decrease. Two mothers described feelings of relief related to knowing their infant best and knowing how best to reduce the infant’s pain.
Parents in this study predominantly described their infant’s pain experience as a source of stress for themselves. However, relief from this stress was also readily described, especially by the parents whose infants were recovering from acute illness or had been discharged. Feelings related to relief of parental stress were hope, joy, confidence, and expressions of positive self-esteem. Parents were able to identify and describe specific sources of relief from the stress they experienced resulting from their infant’s pain. These descriptions formed subcategories of: staff support, involvement in parenting in the NICU, and information resources (Table 4). 3.2.1. Staff support Parents reported that NICU nurses, home visiting nurses, and infant development specialists were helpful in relieving parental feelings of stress related to their infant’s pain. Five parents stated that nurses in the NICU provided relief from distress by giving early encouragement for participation in pain care, advocating for the infant’s pain care with the doctors, and as a source of emotional support. Staff support was described in a variety of ways, You need to have someone to stand behind you initially and teach you about his wires, etc. Then later you need to be left alone. Nurses advocated for my baby’s well being with the doctorsythey saw when something was different or wrong and told the doctors. The comforting techniques and other behavioral interventions taught to parents by the developmental specialists in one of the NICUs provided parents with relief from distress related to the infant’s pain. They [staff] didn’t tell me about the eye examyI went to the internet and got information which I told Elizabeth [the developmental specialist]. She had suggestions for strategies like swaddling and giving the baby a dummy [pacifier] to suck and that made all the difference. Four parents in this study were surprised that they were more stressed by their infant’s pain and discomfort
She screamed for the first three weeks [after discharge]. I got good follow-up from the home visiting nurse and the family centre. She slept for only two hours a day. I was grateful for the support.
It freaked me out when he first turned blueynow I just turn up the oxygen. I think it’s the same when you see the baby in painyyou get more confident with what to do. 3.2.3. Information resources Parents identified the Internet as a source of relief from the stress related to their information needs about the management of infant pain. Two parents discussed how helpful the Internet was for finding support from other parents with similar experiences in the NICU. I lived for the support I got from other parents on the Internet. The trouble with the computer is that you can only use it at home, not in the hospital when you want to be near your baby. Additionally, all parents who worked with the developmental specialists in one of the NICUs mentioned that the written materials provided by them were helpful in decreasing stress related to not knowing how to help the infant. Parents of infants who had been discharged from the NICU did not differ from the parents of the inpatient infants in their recall of sources of relief from parental stress due to infant pain.
4. Discussion The findings from this study expand our understanding of parents’ experiences related to their infant’s pain in the NICU. The findings of this and other studies (Franck et al., 2001; Miles et al., 1992, 1993, 1996; Werceszczak et al., 1997) indicate infant pain is a source of stress for parents in the NICU. Inability to perform the normal parenting role appears to be the predominant source of stress regarding the infant’s pain experience described by the parents in this study. Parents’ struggles with role alteration are manifested in
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every subcategory of both the sources of stress and relief from stress. The findings of unmet parental needs to protect and support the baby, feelings of loss of control and competition with nurses, and mismatched perceptions with staff concur with findings previously documented in the literature (Bass, 1991; Griffin, 1990; Griffin et al., 1998; Klaus and Kennell, 2001; McNeil, 1992; Miles et al., 1992, 1993). The finding that staff can be both a source of stress and a source of relief from stress has been reported in prior research (Holditch-Davis and Miles, 2000; Miles et al., 1993; Werceszczak et al., 1997). Watt-Watson et al. (1990) found that parents’ perceptions of their child’s acute pain experience were influenced by their involvement with their child’s pain care. The positive impact of the developmental specialists described by four of the six mothers in one NICU suggests that staff assistance to increase parental knowledge and involvement may be similarly effective in relieving parental stress related to infant pain. These mothers were able to readily discuss the awareness and management of their infant’s pain and discomfort cues, and they also seemed to be more comfortable about themselves as mothers. The mothers reported that the developmental specialists provided both assurance and information, two of the highest ranked needs among parents of infants in the NICU (Ward, 2001). More research is needed to understand the impact of interventions by staff to support development of the protective parenting role in the NICU and to investigate specific ways the staff can reduce parental stress related to their infant’s pain. Parents who participated in this study were open and eager to talk about their feelings related to experiences in the NICU. This may indicate the need for ‘‘debriefing’’, as suggested by Miles and Holditch-Davis (1997), which may be helpful to parents in understanding the impact of their NICU experience on their developing relationship with their child and their transition to parenting. Further study is indicated to understand how opportunities for debriefing during and after the NICU experience may help parents’ in dealing with issues arising from their infant’s pain and pain care. 4.1. Implications for clinical practice Applicability of the findings from this study to clinical practice is limited by a small sample from two NICUs in the same locale. Despite these limitations, this study offers important implications for healthcare providers. Staff can anticipate that parents may experience stress related to their infant’s pain. Parents may not expect to see their infant have pain in the NICU, may be unprepared to witness painful procedures being performed on their infant, and may have particular concerns about not being able to protect their infant
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from pain. NICU staff can be a source of relief from these stressors by acknowledging and encouraging expression of parental concerns, providing information and anticipatory guidance regarding infant responses to pain and pain management, and showing compassionate care to the infant and emotional support for parents. Staff should also provide access to other sources of information and most importantly encourage and support early involvement in infant care that increases over time.
Acknowledgements The authors gratefully acknowledge the support of the staff and administration of the Neonatal Unit and Children’s Outpatients Departments of Guy’s & St. Thomas’ Hospital Trust, and the Winicott Baby Unit and Children’s Outpatient Clinic at St. Mary’s Hospital Trust, both in London, England and, in particular, wish to thank Susanne Cox, Research Co-ordinator School of Nursing & Midwifery, King’s College London, and Inga Warren, Dip. COT, MSc, Neonatal Development Specialist and Jeannine Pompon, Sister, Winicott Baby Unit for their assistance with parent recruitment for this project. We wish to thank the parents who participated in this study for sharing their experiences and insights.
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