- Email: [email protected]
Parent views of infant pain and pain management in the neonatal intensive care unit
RESEARCH
Abstract It is well established that infant pain is an important concern of parents, but little is known about the knowledge and expectations of parents regarding their infant’s pain or about parents’ involvement in their infant’s care and satisfaction with pain management by neonatal intensive care unit (NICU) staff. Parents have an important role to play in helping health care professionals understand their child’s pain and in providing comfort to their child. Neonatal nursing has been at the forefront of family-centered care, but family involvement in pain care has lagged behind other aspects. New guidelines and standards emphasize the importance of the family’s role in pain management. This article examines the rationale for supporting parent involvement in infant pain care and discusses the importance of understanding parent views on infant pain in light of the new standards for pain management set forth by the Joint Commission on Accreditation of Healthcare Organizations. Findings from a survey to determine parent understanding of and involvement in infant pain care in one NICU are presented. A continuous-qualityimprovement approach for enabling the involvement of parents in their infant’s pain care is proposed, and specific strategies are suggested. c 2001 by Copyright W.B. Saunders Company
Parent Views of Infant Pain and Pain Management in the Neonatal Intensive Care Unit By Linda S. Franck, PhD, RN, RGN, RSCN, Kim Scurr, BSN, RN, and Sue Couture, RN
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n contemporary management of pain, the family is viewed as playing a key role in the assessment and management of a patient’s pain. The importance of involving families in pain management is most evident in the care of children, where investigation of parents’ roles in assessment and management of children’s pain has led to changes in health care practices that encourage and support parental involvement in their child’s pain care. However, little is known about parents’ perceptions of or participation in pain care provided to infants in the neonatal intensive care unit (NICU). This article examines the rationale for supporting parent involvement in infant pain care and discusses the importance of understanding parent views on infant pain in light of the new standards for pain management set forth by the Joint Commission on Accreditation of Healthcare Organizations (JCAHO). Findings from a survey designed to determine parent understanding of and involvement in infant pain care in one NICU are presented. A continuous-quality–improvement (CQI) approach for enabling the involvement of parents in their infant’s pain care is proposed, and specific strategies are suggested.
Significance of the Parental Role in the NICU Setting
P From King’s College London School of Nursing and Midwifery, London, England, and the University of California, San Francisco, CA. Address reprint requests to Linda S. Franck, PhD, RN, RGN, RSCN, Professor of Children’s Nursing Research Studies, King’s College London School of Nursing and Midwifery, James Clerk Maxwell Bldg, 1. 21b, 57 Waterloo Rd, London SE1 8WA England. E-mail: [email protected] c 2001 by W.B. Saunders Company Copyright 1527-3369/01/0102-0001$35.00/0 doi:10.1053/nbin.2001.24429
arent-infant attachment is a process that begins before birth and develops during the first year of a child’s life. Parental involvement in care is essential for both healthy attachment and the optimal development of NICU infants.1 Pressler2 defines parenting as the ability of the caregiver to provide an environment that promotes the optimum growth and development of another human. Over time, the family has the greatest influence on an infant’s health and well-being.3 NICU nurses have been at the forefront of research and innovative practice in supporting parental role development in the NICU setting. A family-centered approach to caregiving has been adopted by most NICUs in which promotion of the parent-infant relationship and family involvement in the infant’s care are of central importance.3 A major focus of neonatal nursing research and practice has been understanding the sources of severe emotional stress experienced by Newborn and Infant Nursing Reviews, Vol 1, No 2 (June), 2001: pp 106–113
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many parents when their sick infant is in intensive care. Interventions to support parents to cope with the stressful NICU experience have been shown to facilitate parental role development.4
Parents Worry About Infant Pain
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arents of infants receiving medical treatment in the NICU worry that their infant may experience pain, and this concern is a major factor contributing to high parental stress during infant hospitalization, even when accounting for other personal and situational stressors.5–7 Parental role alteration, including feeling helpless in not being able to protect the baby and not knowing how to help the baby, was found to be the highest source of stress for parents of preterm infants.5 Also, there may be long-term effects of parental distress related to infant pain in the NICU. In one study, mothers of 3-year-old infants born preterm recalled their infants’ suffering as one of the most stressful experiences of the hospitalization.8 Further evidence of the importance of infant pain management to parents was shown in the vigorous parent advocacy efforts over the past decade. Parents concerned about infant pain and lack of pain management for infants in the NICU have lobbied medical groups, focused media attention on the issue, and pursued legal action against hospitals and doctors for failing to provide anesthesia during surgery.9
Parent Involvement in Children’s Pain Management
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espite the evidence that infant pain is a major source of stress for parents, no studies have examined parental expectations, involvement, and satisfaction with pain management in the NICU. However, a few studies have examined parental involvement in child pain management in the acute pediatric ward setting. Parents of infants and children in general pediatric units reported that lack of information about painful procedures and pain treatment, difficulties with the hospital system (eg, long wait times for analgesia), lack of parental involvement in the child’s pain care, and lack of staff responsiveness to parental concerns were significant factors contributing to parental stress. These parents reported that they wished to be more involved in collaborating with the health care team to alleviate their child’s pain and emphasized the importance of clear, honest, open communication, with information repeated as many times as needed.10 In another study,11 which used a grounded-theory method, 22 parents of hospitalized children were interviewed about their child’s postoperative pain. Two major themes emerged: monitoring (being alert to the child’s signs
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of pain and ensuring that action was taken to relieve the pain) and comforting (providing physical and psychological care during pain). However, parents in the sample had misconceptions about their child’s pain and also had low expectations for their child’s pain relief. For example, parents made value judgements about how much pain their child “ought to have” based on the child’s diagnosis, and children whose injuries were more visible were expected to have more pain. Parents had many misconceptions about the safe use of analgesics and appeared overly concerned about side effects, particularly sedation. They also expressed concerns about the nurses’ care of their child’s pain, and they expressed the need for more information and support from the nursing staff regarding pain management. Only one study has measured parents’ satisfaction with their child’s pain care.12 Parents in this study rated their child’s pain as moderate to severe and reported long waiting times for medication. However, they were generally satisfied with their child’s pain care. High patient satisfaction despite suboptimal pain management has been reported in studies of adult patients.13 This may be because patients have low expectations about pain relief; are satisfied that hospital staff showed concern for patients’ pain, even though pain relief was not achieved; or are unable to evaluate quality of care when they do not know the standards and criteria by which to judge quality care.14 The positive impact of involving parents in the care of their child’s pain has been suggested in the pediatric literature. There is evidence that parents’ ratings are the best proxy measure of a child’s pain when self-reporting cannot be obtained.15 Parental presence can reduce the child’s pain intensity and behavioral distress, particularly when parents are given instruction in how to comfort their child during the procedure.16,17 In one study, parents who received the comprehensive pain assessment and management education booklet had more positive attitudes about the use of pain medication for children and used more medication for their child’s pain at home after their child’s day surgery than parents who did not receive the booklet.18 Thus, interventions to improve parent knowledge and involvement may improve children’s pain management.
Professional Guidelines and Standards Regarding Family Involvement in Pain Management
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he first professional body to publish guidelines for pain assessment and management was the American Pain Society.19 This was followed shortly by the comprehensive evidence-based guidelines produced by the Agency for Healthcare Quality and Research, formerly the Agency for Health Care Policy and Research.20 These two documents were instrumental in changing pain assessment and
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management practices for all hospitalized patients, including neonates. A period of further refinement and application of the principles of pain assessment and management to specific patient groups followed. Although the importance of the family is often mentioned in these guidelines, specific strategies for involving the family are not provided. Few guidelines specifically address parental involvement in infant pain management. In 1987, the American Association of Critical Care Nurses published an educational pamphlet for parents that described the rights of parents of infants in the NICU.21 The pamphlet emphasized the need for parents to receive information about painful procedures, use of anesthesia and analgesia, and infant responses to pain and analgesia. In 1999, the National Association of Neonatal Nurses published a position statement saying that parental involvement in infant pain management is advisable.22 In the United Kingdom, the Royal College of Nursing published guidelines on assessing acute pain in children,23 which identified parent involvement in pain assessment and management as a key area of pediatric pain care. Unfortunately, there are no published data that evaluate the effect of the neonatal guidelines on NICU practices or parent involvement in their infant’s pain care. The most comprehensive, specific, and directive guidelines for pain management were recently published by the JCAHO.24 The pain management standards are integrated into every chapter of the JCAHO accreditation standards, and they “set forth new expectations for the assessment and management of pain in accredited hospitals and other health care settings.”25 Two chapters in particular have been significantly revised to emphasize the role of the family. The “Patient Rights and Organizational Ethics” chapter (RI.1.2.7) specifically states that organizations must educate patients—and families where appropriate—regarding their role in managing pain and must communicate to patients and families that pain management is an important part of care. The “Education of Patients and Families” chapter goes further, specifying that patient/family education includes understanding pain, the risk for pain, and the importance of effective pain management, and it specifies that appropriate disciplines collaborate in the development of policies and procedures for educating patients and families. The need for institutions to provide educational materials to patients and families is implied in the evidence of performance examples (PF.2 through PF.2.7).
Parent Views of Infant Pain: The Missing Link
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CQI approach provides structure and process for effecting change to improve the care delivered to patients in health care settings.26 The CQI process enables service providers to understand processes, decrease variation in practices, and identify opportunities for improving service.
The first step in the CQI process is to assess customer expectations. The assessment provides the basis for intervention, and it is followed by ongoing quality monitoring and evaluation. The JCAHO 10-step process for improving health care quality is based on the principles of CQI.27 The recent JCAHO standards regarding pain assessment and management are based on the assumption that pain care quality is an important indicator of overall patient care quality. This approach has been used successfully to improve NICU staff management of infant pain,28,29 but without reference to parents’ involvement. Although theoretic rationale and professional mandates indicate that parents should be supported and encouraged to be involved in their infant’s pain care, no data currently exist regarding parent views on infant pain. Until we have a better understanding of parent expectations, knowledge, involvement, and satisfaction with infant pain management, we will be unable to effectively implement the guidelines and standards for pain management in the NICU. It is essential that health professionals understand the parent’s views regarding infant pain before designing interventions to enhance their involvement. The following survey (Table 1) illustrates how parent expectations, knowledge, involvement, preferences, and satisfaction with infant pain care can be measured in the NICU setting and illustrates the importance of soliciting parent views before the development of educational materials or other interventions.
Materials and Methods
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he purpose of the survey was to elicit parents’ views (ie, their understanding of, involvement in, and satisfaction with) on infant pain assessment and management in the NICU. Data were collected in a tertiary-level NICU in a large West Coast city. The NICU had 50 beds, was linked with a high-risk perinatal unit within the hospital, and provided medical and surgical care to preterm and fullterm neonates. During the 11-month study period (October 1998 to August 1999), a convenience sample of 95 parents completed the survey, representing approximately 20% of the total population of parents who were eligible to participate in the survey. Because anonymity of responses was an important aspect of this survey, no specific demographic information on parents or infants was obtained, and no individual parent responses were matched with infant data. The demographic characteristics of the NICU population during the survey period are summarized as follows. The NICU received approximately 65 admissions per month; approximately one third of the infants were inborn, and two thirds of the infants were transported from hospitals in the region. Parent ethnicity was 48% white, 32% Hispanic, 10% African American, 7% Asian, and 3% other ethnicities. A 24-hour parental visiting policy had been in place for
Parent Views of Infant Pain
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Table 1. Parent Views of Infant Pain Management in the NICU: Survey Instrument The ICN staff is committed to providing your baby with quality care while in the NICU. We are very interested in hearing from you about the care your baby receives. Your answers will help us to improve our service. We would like to ask you 21 questions about pain in babies. Please be very honest. Your answers are confidential and will be used to help us give parents more information. 1. Do you think your baby has felt pain while in the ICN? Yes No Unknown 2. How much pain has your baby felt? None Very little Some A lot 3. I received verbal information about pain control for my baby. Yes No 4. I received written information about pain control for my baby. Yes No 5. I received information about pain control for my baby from Nurse Doctor Nurse practitioner (NP) Nurse, doctor Nurse, doctor, NP Nurse, NP Doctor, NP Someone else No one 6. How much pain did you expect your baby to have while in the ICN? None Very little Some A lot 7. How satisfied were you with the amount of information you received about pain control for your baby? Satisfied Somewhat satisfied Somewhat dissatisfied Dissatisfied 8. The nurses showed me how to look for signs of pain in my baby. Yes No 9. The nurses showed me how to make my baby more comfortable using Positioning Pacifier Swaddling Feeding Patting or rocking Music/toys 10. How satisfied were you that the nurses made your baby more comfortable? Satisfied Somewhat satisfied Somewhat dissatisfied Dissatisfied 11. I felt confident that the nurses could tell when my baby was in pain. Yes No 12. I felt confident that the doctors could tell when my baby was in pain. Yes No 13. My baby received medicine for pain. Yes No Don’t know 14. The medicine helped my baby feel less pain. Yes No Don’t know 15. Sometimes my baby didn’t have pain, but received other medicine to make him/her calm. Yes No Don’t know 16. When your baby received pain medicine, were you very worried that your baby Would become addicted? Would stop breathing? Wasn’t getting enough pain medicine? I was not very worried about any of these things. 17. The nurses were supportive regarding my concerns about my baby’s pain. Always Sometimes Occasionally Never 18. The doctors were supportive regarding my concerns about my baby’s pain. Always Sometimes Occasionally Never 19. How satisfied were you with the nurses’ responses to your baby’s pain? Satisfied Somewhat satisfied Somewhat dissatisfied Dissatisfied 20. How satisfied were you with the doctors’ responses to your baby’s pain? Satisfied Somewhat satisfied Somewhat dissatisfied Dissatisfied 21. If a painful procedure was to be done on your baby, would you prefer to Stay at your baby’s bedside during the procedure? Leave the room during the procedure? Thank you for taking the time to answer this survey. If you have any other comments or questions about pain in babies, we would like to know them. Please write them below. NOTE. Authored by Linda S. Franck, Kim Scurr, and Sue Couture. c 1998 by Linda S. Franck, Kim Scurr, and Sue Couture. To be used only with authors’ permission. Copyright
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over 10 years, and parents were encouraged to participate in their infant’s care. Parents were eligible for participation in the survey if their infant was in the NICU for more than 5 days and if the parent could read and write English. Only 1 parent per infant completed the survey. All parents who were invited to participate in the survey agreed to do so. The study received expedited approval from the hospital institutional review board. Consent to participate in the project was given by completing the survey. Parent Views on Infant Pain Questionnaire A 21-item survey to measure parent expectations, involvement and satisfaction with their infant’s pain management in the NICU was developed specifically for this study (Table 1). The items were developed based on the American Pain Society’s (APS) patient pain management satisfaction survey and subsequent research that examine 5 dimensions of adult patient pain management satisfaction: outcome, overall quality, humanness, competence, bureaucracy, and informativeness.12,13,19 Face and content validity of the survey were established using a panel of experts in the fields of pain and quality improvement. Procedures A member of the project team approached parents at a quiet time while the parent was visiting the infant and informed them that parents were being asked to give their views on infant pain management in the NICU as part of an ongoing effort to improve the care provided to infants and families. Parents were given assurance that their responses would be anonymous and asked if they wished to participate. Parents who agreed to complete surveys were given brief instructions on the use of an automated survey box (Point of View Survey Systems, Denver, CO) or the paper
questionnaire. Parents completed the survey at the infant’s bedside or in a quiet room near the NICU, depending on their preference. Results Seventy-five parents completed the survey using the Point of View survey box, and 20 parents completed a paper version of the survey. Based on chi-square tests, there were no significant differences in the responses to any of the questions given by parents completing the survey by the two different methods. Therefore, findings are reported for the total sample. Five of the parents did not answer all of the questions. Results are reported as percentages of the total responses for each question. Eighty-five percent of parents believed their infant experienced pain while in the NICU (Table 2). The majority of parents (55%) felt that their infant experienced some pain, and 15% reported that their infant experienced a lot of pain. Parent reports of actual pain were consistent with reported levels of expected pain (Fig 1). Most parents (81%) reported that they received verbal information about pain control; only 12% stated that they received written information about pain control for their infant (Table 2). Parents received information only from nursing staff (34%) or from nursing and medical staff (45%). However, 16% of parents reported that no one talked with them about their infant’s pain. Although most parents reported satisfaction with the amount of information they received, 19% reported dissatisfaction. Forty-one percent of the parents reported that nurses showed them how to look for signs of pain in their infant (Table 2), and over one half (52%) of parents received instruction on at least one specific method of helping to make their infant more comfortable (Fig 2). A slight majority of parents (53%) stated they wished to remain at their infant’s bedside when painful procedures occurred; the rest
Table 2. Parent Views of Infant Pain in the NICU Item Pain assessment My baby has felt pain I received verbal information about pain control I received written information about pain control The nurses showed me how to look for signs of pain in my baby I felt confident the nurses could tell when my baby was in pain Pain management My baby received pain medication The medication helped my baby feel less pain My baby received calming medication I would prefer to stay at my baby’s bedside during painful procedures
Yes (%)
No (%)
Unsure (%)
85 81 12 41 89
10 19 88 59 11
5 0 0 0 0
82 70 57 53
8 0 12 47
10 30 31
Parent Views of Infant Pain
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Fig 1. Parent perception of expected and actual infant pain: “How much pain has your baby felt?”
(47%) wished to leave the room during painful procedures (Table 2). Ten percent of parents did not know whether their infant received pain medication, and 30% did not know if the medication helped their infant feel less pain. Almost one third of parents (31%) did not know whether their infant received other calming drugs (Table 2). Over half (53%) of the sample reported they did not worry about medication side effects; however, 23% reported concern about addiction, 14% were concerned about respiratory failure, and 10% worried that their infant did not receive enough pain medication (Fig 3). Parents reported a high degree of confidence that nurses and doctors could detect pain in their infants, and they were generally satisfied with the pain management received.
However, a significant number of parents reported that they did not always feel supported by nurses and physicians with regard to their concerns about their infant’s pain (Fig 4). Although the anonymous survey method used in this survey may have encouraged participation, it did not allow for matching of individual responses with infant data so that the impact of the infant’s condition, length of time in the hospital, or other factors on parental views about infant pain could not be determined. Nor could it be determined if the parents who received less information were the ones who were less involved or less satisfied. Furthermore, because the survey was limited to parents with English literacy, the views of parents who do not read and write English are not reflected in the findings.
Fig 2. Parent involvement in infant pain management: “The nurse showed me how to use these comfort measures.”
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Fig 3. Parent concerns about infant pain management: “I was worried my baby would . . .”
CQI Strategies for Improving Parent Involvement in Infant Pain
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hese survey results provide a baseline assessment of parent views on infant pain and an evidence base to support the development of interventions to improve parent knowledge and involvement. Equally important, the process of conducting the survey showed parents that the staff were concerned about infant pain and were interested in the views of parents, and it provided opportunities for individual parents to express their concerns and questions to the NICU staff. The findings from this survey indicate that parents are aware of their infant’s pain and that NICU staff do communicate at least verbally with most parents about how infant pain will be managed. Parent involvement in pain assess-
ment and management varied, and parents differed in their preference to stay at the bedside or leave the unit during painful procedures. Through the survey, the NICU staff became aware of these differences in parent preferences and provided parents with information and choices regarding their level of participation. Based on the findings of a lack of written materials for parents, the NICU staff may develop a parent information sheet addressing some of the common concerns parents expressed about pain. The NICU staff may also adopt a policy of specifically asking parents whether they wish to be at the bedside during procedures and, if so, give them a means by which to participate in helping the infant.17 The NICU staff may also wish to provide education to staff about the most effective environmental and behavioral strategies to manage pain and develop methods of teaching these techniques to parents.30 Lastly, the NICU staff may incorporate specific pain assessment and management techniques into the discharge preparation for parents. Periodic re-audit of parent views will indicate if these interventions are effective and if these improvements can be sustained.
Parent Involvement in Infant Pain: The Research Agenda
F Fig 4. Parent satisfaction with infant pain care: “The nurses and doctors were supportive regarding my concerns about my baby’s pain.”
urther exploration of parent knowledge, involvement, and satisfaction with infant pain management in the NICU setting and interventions to improve parent knowledge and participation in their infant’s comfort are warranted. Qualitative research designs are needed to provide a better understanding of the meaning of infant pain for parents of critically ill infants. Quantitative designs can be used to test the effectiveness of interventions to improve the knowledge and participation of parents in identifying
Parent Views of Infant Pain
their infant’s signs of pain and in providing comfort to their infants. Longitudinal studies are needed to test the hypotheses that parent involvement in infant pain care in the NICU can attenuate the stress caused by loss of parental role associated with the infant’s hospitalization; enhance parentinfant attachment; or increase parenting competence on discharge of the infant from the NICU.
Conclusions
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ew guidelines and standards emphasize the importance of the family’s role in pain management. These guidelines provide the impetus for development of a more comprehensive approach to infant pain management, which takes into account the central role that parents will play in the ongoing assessment and management of the infant’s pain after discharge from the NICU. Individual NICUs can advance the quality of infant pain care by establishing an infant pain management CQI program to monitor and evaluate the effectiveness of the current pain care provided and by integrating parents in their infant’s pain care. Research regarding parent views of infant pain and the effectiveness of interventions to improve parent knowledge and involvement will provide the evidence base for ongoing improvement of practice.
Acknowledgments This work was conducted in part while Professor Franck was at the School of Nursing, University of California, San Francisco. The authors wish to thank Kelly Connell, CNIII, RN, Korrie McGinnis, CNII, RN, Mary Hart, CNIII, RN, and Elizabeth Rohnstock, CNIII, RN, for their assistance with data collection.
References 1. Gardner SL, Garland KR, Merenstein GB: The neonate and the environment: Impact on development, in Merenstein GB, Gardner SL (eds): Handbook of Neonatal Intensive Care. St. Louis, MO, Mosby, 1993, pp 564–608 2. Pressler JL: Promoting attachment, in Craft M, Denehy J (eds) Nursing Interventions for Infants and Children. Philadelphia, PA, WB Saunders, 1990, pp 4–17 3. Goldson E: The neonatal intensive care unit: Premature infants and parents. Infants and Young Children 4:31–42, 1992 4. Gale G, Franck LS: Toward a standard of care for parents of infants in the neonatal intensive care unit. Crit Care Nurse 18:62–74, 1998 5. Miles MS, Funk SG, Kasper MA: The stress response of mothers and fathers of preterm infants. Res Nurs Health 15:261–269, 1992 6. Miles MS, Funk S, Carlson J: Parental stressor scale: Neonatal intensive care unit. Nurs Res 42:148–152, 1993 7. Shields-Poe D, Pinelli J: Variables associated with parental stress in neonatal intensive care units. Neonatal Netw 16:29–37, 1997
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8. Werceszczak J, Miles MS, Holditch-Davis D: Maternal recall of the neonatal intensive care unit. Neonatal Netw 16:33–40, 1997 9. Franck LS: Sociopolitical and technological influences on the study and treatment of neonatal pain. Adv Nurs Sci 15:11–20, 1992 10. Watt-Watson JH, Evernden C, Lawson C: Parents’ perceptions of their child’s acute pain experience. J Pediatr Nurs 5:344–349, 1990 11. Woodgate R, Kristjanson LJ: A young child’s pain: How parents and nurses ‘take care.’ Int J Nurs Stud 33:271–284, 1996 12. Ward SE, Gordon DG: Application of the American Pain Society quality assurance standards. Pain 56:299–306, 1994 13. Miaskowski C: Assessment of patient satisfaction utilizing the American Pain Society’s quality assurance standards on acute and cancerrelated pain. J Pain Symptom Manage 9:5–11, 1994 14. Frederick BJ, Sharp JQ, Adkins N: Quality of patient care: Whose decision? J Nurs Qual Assurance 2:1–10, 1988 15. Beyer JE, McGrath PJ, Berde CB: Discordance between self-report and behavioral pain measures in children aged 3–7 years after surgery. J Pain Symptom Manage 5:350–356, 1990 16. Manne SL, Redd WH, Jacobson PB, et al: Behavioral intervention to reduce child and parent distress during venipuncture. J Consult Clin Psychol 58:565–572, 1990 17. Blount RL, Bachanes PJ, Powers SW, et al: Training children to cope and parents to coach them during routine examinations: Effects on child, parent, and staff behaviors. Behav Ther 23:689–706, 1991 18. Chambers CT, Reid GJ, McGrath PJ, et al: A randomized trial of a pain education booklet: Effects on parent attitudes and postoperative pain management. Children’s Health Care 26:1–13, 1997 19. Committee on Quality Assurance Standards, American Pain Society: American Pain Society quality assurance standards for relief of acute pain and cancer, in Bond MR, Charlton JE, Woolf CJ (eds): Pain Research and Clinical Management, vol 4. Proceedings of the 5th World Congress on Pain. Amsterdam, Elsevier, 1991, pp 185–189 20. Agency for Health Care Policy and Research (AHCPR), Public Health Service: Acute pain management: Medical procedures and trauma. Rockville, MD, Department of Health and Human Services, 1992, AHCPR Publ No. 92-0032 21. American Association of Critical Care Nurses: It is critical that you know . . . What you should do when your baby is in the neonatal intensive care unit (pamphlet). Aliso Viejo, CA, American Association of Critical Care Nurses, 1987 22. National Association of Neonatal Nurses: Position statement: Pain management in neonates. Central Lines 15:11–12, 1999 23. Royal College of Nursing: Clinical practice guidelines: Recognition and assessment of acute pain in children. Bristol, UK, RCN Publishing, 1999 24. Joint Commission on Accreditation of Healthcare Organizations: Accreditation Manual for Hospitals (1999). Available at http:// www.jcaho.org/standards/pm. Accessed March 25, 2001 25. Joint Commission on Accreditation of Healthcare Organizations: Pain Management Standards (press release). Oakbrook Terrace, IL, JCAHO, 1999 26. Kirk R: The big picture: Total quality management and continuous quality improvement. J Nurs Adm 22:24–31, 1992 27. Joint Commission on Accreditation of Healthcare Organizations: Accreditation Manual for Hospitals: Standards QA 1.1–1.4. Chicago, JCAHO, 1992 28. Friedrichs JB, Young S, Gallagher D, et al: Where does it hurt? An interdisciplinary approach to improving the quality of pain management in the neonatal intensive care unit. Nurs Clin North Am 30:143–159, 1995 29. Furdon SA, Eastman M, Benjamin K, et al: Outcome measures after standardizing pain management strategies in postoperative patients in the neonatal intensive care unit. J Perinat Neonat Nurs 12:58–69, 1998 30. Franck LS, Lawhon G: Environmental and behavioral strategies to prevent and manage neonatal pain, in McGrath PJ, Anand S, Stevens B (eds): Pain in Neonates: Pain Research and Clinical Management, vol 10 (ed 2). Amsterdam, The Netherlands, Elsevier, 2000, pp 205–218
Abstract It is well established that infant pain is an important concern of parents, but little is known about the knowledge and expectations of parents regarding their infant’s pain or about parents’ involvement in their infant’s care and satisfaction with pain management by neonatal intensive care unit (NICU) staff. Parents have an important role to play in helping health care professionals understand their child’s pain and in providing comfort to their child. Neonatal nursing has been at the forefront of family-centered care, but family involvement in pain care has lagged behind other aspects. New guidelines and standards emphasize the importance of the family’s role in pain management. This article examines the rationale for supporting parent involvement in infant pain care and discusses the importance of understanding parent views on infant pain in light of the new standards for pain management set forth by the Joint Commission on Accreditation of Healthcare Organizations. Findings from a survey to determine parent understanding of and involvement in infant pain care in one NICU are presented. A continuous-qualityimprovement approach for enabling the involvement of parents in their infant’s pain care is proposed, and specific strategies are suggested. c 2001 by Copyright W.B. Saunders Company
Parent Views of Infant Pain and Pain Management in the Neonatal Intensive Care Unit By Linda S. Franck, PhD, RN, RGN, RSCN, Kim Scurr, BSN, RN, and Sue Couture, RN
I
n contemporary management of pain, the family is viewed as playing a key role in the assessment and management of a patient’s pain. The importance of involving families in pain management is most evident in the care of children, where investigation of parents’ roles in assessment and management of children’s pain has led to changes in health care practices that encourage and support parental involvement in their child’s pain care. However, little is known about parents’ perceptions of or participation in pain care provided to infants in the neonatal intensive care unit (NICU). This article examines the rationale for supporting parent involvement in infant pain care and discusses the importance of understanding parent views on infant pain in light of the new standards for pain management set forth by the Joint Commission on Accreditation of Healthcare Organizations (JCAHO). Findings from a survey designed to determine parent understanding of and involvement in infant pain care in one NICU are presented. A continuous-quality–improvement (CQI) approach for enabling the involvement of parents in their infant’s pain care is proposed, and specific strategies are suggested.
Significance of the Parental Role in the NICU Setting
P From King’s College London School of Nursing and Midwifery, London, England, and the University of California, San Francisco, CA. Address reprint requests to Linda S. Franck, PhD, RN, RGN, RSCN, Professor of Children’s Nursing Research Studies, King’s College London School of Nursing and Midwifery, James Clerk Maxwell Bldg, 1. 21b, 57 Waterloo Rd, London SE1 8WA England. E-mail: [email protected] c 2001 by W.B. Saunders Company Copyright 1527-3369/01/0102-0001$35.00/0 doi:10.1053/nbin.2001.24429
arent-infant attachment is a process that begins before birth and develops during the first year of a child’s life. Parental involvement in care is essential for both healthy attachment and the optimal development of NICU infants.1 Pressler2 defines parenting as the ability of the caregiver to provide an environment that promotes the optimum growth and development of another human. Over time, the family has the greatest influence on an infant’s health and well-being.3 NICU nurses have been at the forefront of research and innovative practice in supporting parental role development in the NICU setting. A family-centered approach to caregiving has been adopted by most NICUs in which promotion of the parent-infant relationship and family involvement in the infant’s care are of central importance.3 A major focus of neonatal nursing research and practice has been understanding the sources of severe emotional stress experienced by Newborn and Infant Nursing Reviews, Vol 1, No 2 (June), 2001: pp 106–113
106
Parent Views of Infant Pain
many parents when their sick infant is in intensive care. Interventions to support parents to cope with the stressful NICU experience have been shown to facilitate parental role development.4
Parents Worry About Infant Pain
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arents of infants receiving medical treatment in the NICU worry that their infant may experience pain, and this concern is a major factor contributing to high parental stress during infant hospitalization, even when accounting for other personal and situational stressors.5–7 Parental role alteration, including feeling helpless in not being able to protect the baby and not knowing how to help the baby, was found to be the highest source of stress for parents of preterm infants.5 Also, there may be long-term effects of parental distress related to infant pain in the NICU. In one study, mothers of 3-year-old infants born preterm recalled their infants’ suffering as one of the most stressful experiences of the hospitalization.8 Further evidence of the importance of infant pain management to parents was shown in the vigorous parent advocacy efforts over the past decade. Parents concerned about infant pain and lack of pain management for infants in the NICU have lobbied medical groups, focused media attention on the issue, and pursued legal action against hospitals and doctors for failing to provide anesthesia during surgery.9
Parent Involvement in Children’s Pain Management
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espite the evidence that infant pain is a major source of stress for parents, no studies have examined parental expectations, involvement, and satisfaction with pain management in the NICU. However, a few studies have examined parental involvement in child pain management in the acute pediatric ward setting. Parents of infants and children in general pediatric units reported that lack of information about painful procedures and pain treatment, difficulties with the hospital system (eg, long wait times for analgesia), lack of parental involvement in the child’s pain care, and lack of staff responsiveness to parental concerns were significant factors contributing to parental stress. These parents reported that they wished to be more involved in collaborating with the health care team to alleviate their child’s pain and emphasized the importance of clear, honest, open communication, with information repeated as many times as needed.10 In another study,11 which used a grounded-theory method, 22 parents of hospitalized children were interviewed about their child’s postoperative pain. Two major themes emerged: monitoring (being alert to the child’s signs
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of pain and ensuring that action was taken to relieve the pain) and comforting (providing physical and psychological care during pain). However, parents in the sample had misconceptions about their child’s pain and also had low expectations for their child’s pain relief. For example, parents made value judgements about how much pain their child “ought to have” based on the child’s diagnosis, and children whose injuries were more visible were expected to have more pain. Parents had many misconceptions about the safe use of analgesics and appeared overly concerned about side effects, particularly sedation. They also expressed concerns about the nurses’ care of their child’s pain, and they expressed the need for more information and support from the nursing staff regarding pain management. Only one study has measured parents’ satisfaction with their child’s pain care.12 Parents in this study rated their child’s pain as moderate to severe and reported long waiting times for medication. However, they were generally satisfied with their child’s pain care. High patient satisfaction despite suboptimal pain management has been reported in studies of adult patients.13 This may be because patients have low expectations about pain relief; are satisfied that hospital staff showed concern for patients’ pain, even though pain relief was not achieved; or are unable to evaluate quality of care when they do not know the standards and criteria by which to judge quality care.14 The positive impact of involving parents in the care of their child’s pain has been suggested in the pediatric literature. There is evidence that parents’ ratings are the best proxy measure of a child’s pain when self-reporting cannot be obtained.15 Parental presence can reduce the child’s pain intensity and behavioral distress, particularly when parents are given instruction in how to comfort their child during the procedure.16,17 In one study, parents who received the comprehensive pain assessment and management education booklet had more positive attitudes about the use of pain medication for children and used more medication for their child’s pain at home after their child’s day surgery than parents who did not receive the booklet.18 Thus, interventions to improve parent knowledge and involvement may improve children’s pain management.
Professional Guidelines and Standards Regarding Family Involvement in Pain Management
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he first professional body to publish guidelines for pain assessment and management was the American Pain Society.19 This was followed shortly by the comprehensive evidence-based guidelines produced by the Agency for Healthcare Quality and Research, formerly the Agency for Health Care Policy and Research.20 These two documents were instrumental in changing pain assessment and
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management practices for all hospitalized patients, including neonates. A period of further refinement and application of the principles of pain assessment and management to specific patient groups followed. Although the importance of the family is often mentioned in these guidelines, specific strategies for involving the family are not provided. Few guidelines specifically address parental involvement in infant pain management. In 1987, the American Association of Critical Care Nurses published an educational pamphlet for parents that described the rights of parents of infants in the NICU.21 The pamphlet emphasized the need for parents to receive information about painful procedures, use of anesthesia and analgesia, and infant responses to pain and analgesia. In 1999, the National Association of Neonatal Nurses published a position statement saying that parental involvement in infant pain management is advisable.22 In the United Kingdom, the Royal College of Nursing published guidelines on assessing acute pain in children,23 which identified parent involvement in pain assessment and management as a key area of pediatric pain care. Unfortunately, there are no published data that evaluate the effect of the neonatal guidelines on NICU practices or parent involvement in their infant’s pain care. The most comprehensive, specific, and directive guidelines for pain management were recently published by the JCAHO.24 The pain management standards are integrated into every chapter of the JCAHO accreditation standards, and they “set forth new expectations for the assessment and management of pain in accredited hospitals and other health care settings.”25 Two chapters in particular have been significantly revised to emphasize the role of the family. The “Patient Rights and Organizational Ethics” chapter (RI.1.2.7) specifically states that organizations must educate patients—and families where appropriate—regarding their role in managing pain and must communicate to patients and families that pain management is an important part of care. The “Education of Patients and Families” chapter goes further, specifying that patient/family education includes understanding pain, the risk for pain, and the importance of effective pain management, and it specifies that appropriate disciplines collaborate in the development of policies and procedures for educating patients and families. The need for institutions to provide educational materials to patients and families is implied in the evidence of performance examples (PF.2 through PF.2.7).
Parent Views of Infant Pain: The Missing Link
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CQI approach provides structure and process for effecting change to improve the care delivered to patients in health care settings.26 The CQI process enables service providers to understand processes, decrease variation in practices, and identify opportunities for improving service.
The first step in the CQI process is to assess customer expectations. The assessment provides the basis for intervention, and it is followed by ongoing quality monitoring and evaluation. The JCAHO 10-step process for improving health care quality is based on the principles of CQI.27 The recent JCAHO standards regarding pain assessment and management are based on the assumption that pain care quality is an important indicator of overall patient care quality. This approach has been used successfully to improve NICU staff management of infant pain,28,29 but without reference to parents’ involvement. Although theoretic rationale and professional mandates indicate that parents should be supported and encouraged to be involved in their infant’s pain care, no data currently exist regarding parent views on infant pain. Until we have a better understanding of parent expectations, knowledge, involvement, and satisfaction with infant pain management, we will be unable to effectively implement the guidelines and standards for pain management in the NICU. It is essential that health professionals understand the parent’s views regarding infant pain before designing interventions to enhance their involvement. The following survey (Table 1) illustrates how parent expectations, knowledge, involvement, preferences, and satisfaction with infant pain care can be measured in the NICU setting and illustrates the importance of soliciting parent views before the development of educational materials or other interventions.
Materials and Methods
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he purpose of the survey was to elicit parents’ views (ie, their understanding of, involvement in, and satisfaction with) on infant pain assessment and management in the NICU. Data were collected in a tertiary-level NICU in a large West Coast city. The NICU had 50 beds, was linked with a high-risk perinatal unit within the hospital, and provided medical and surgical care to preterm and fullterm neonates. During the 11-month study period (October 1998 to August 1999), a convenience sample of 95 parents completed the survey, representing approximately 20% of the total population of parents who were eligible to participate in the survey. Because anonymity of responses was an important aspect of this survey, no specific demographic information on parents or infants was obtained, and no individual parent responses were matched with infant data. The demographic characteristics of the NICU population during the survey period are summarized as follows. The NICU received approximately 65 admissions per month; approximately one third of the infants were inborn, and two thirds of the infants were transported from hospitals in the region. Parent ethnicity was 48% white, 32% Hispanic, 10% African American, 7% Asian, and 3% other ethnicities. A 24-hour parental visiting policy had been in place for
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Table 1. Parent Views of Infant Pain Management in the NICU: Survey Instrument The ICN staff is committed to providing your baby with quality care while in the NICU. We are very interested in hearing from you about the care your baby receives. Your answers will help us to improve our service. We would like to ask you 21 questions about pain in babies. Please be very honest. Your answers are confidential and will be used to help us give parents more information. 1. Do you think your baby has felt pain while in the ICN? Yes No Unknown 2. How much pain has your baby felt? None Very little Some A lot 3. I received verbal information about pain control for my baby. Yes No 4. I received written information about pain control for my baby. Yes No 5. I received information about pain control for my baby from Nurse Doctor Nurse practitioner (NP) Nurse, doctor Nurse, doctor, NP Nurse, NP Doctor, NP Someone else No one 6. How much pain did you expect your baby to have while in the ICN? None Very little Some A lot 7. How satisfied were you with the amount of information you received about pain control for your baby? Satisfied Somewhat satisfied Somewhat dissatisfied Dissatisfied 8. The nurses showed me how to look for signs of pain in my baby. Yes No 9. The nurses showed me how to make my baby more comfortable using Positioning Pacifier Swaddling Feeding Patting or rocking Music/toys 10. How satisfied were you that the nurses made your baby more comfortable? Satisfied Somewhat satisfied Somewhat dissatisfied Dissatisfied 11. I felt confident that the nurses could tell when my baby was in pain. Yes No 12. I felt confident that the doctors could tell when my baby was in pain. Yes No 13. My baby received medicine for pain. Yes No Don’t know 14. The medicine helped my baby feel less pain. Yes No Don’t know 15. Sometimes my baby didn’t have pain, but received other medicine to make him/her calm. Yes No Don’t know 16. When your baby received pain medicine, were you very worried that your baby Would become addicted? Would stop breathing? Wasn’t getting enough pain medicine? I was not very worried about any of these things. 17. The nurses were supportive regarding my concerns about my baby’s pain. Always Sometimes Occasionally Never 18. The doctors were supportive regarding my concerns about my baby’s pain. Always Sometimes Occasionally Never 19. How satisfied were you with the nurses’ responses to your baby’s pain? Satisfied Somewhat satisfied Somewhat dissatisfied Dissatisfied 20. How satisfied were you with the doctors’ responses to your baby’s pain? Satisfied Somewhat satisfied Somewhat dissatisfied Dissatisfied 21. If a painful procedure was to be done on your baby, would you prefer to Stay at your baby’s bedside during the procedure? Leave the room during the procedure? Thank you for taking the time to answer this survey. If you have any other comments or questions about pain in babies, we would like to know them. Please write them below. NOTE. Authored by Linda S. Franck, Kim Scurr, and Sue Couture. c 1998 by Linda S. Franck, Kim Scurr, and Sue Couture. To be used only with authors’ permission. Copyright
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over 10 years, and parents were encouraged to participate in their infant’s care. Parents were eligible for participation in the survey if their infant was in the NICU for more than 5 days and if the parent could read and write English. Only 1 parent per infant completed the survey. All parents who were invited to participate in the survey agreed to do so. The study received expedited approval from the hospital institutional review board. Consent to participate in the project was given by completing the survey. Parent Views on Infant Pain Questionnaire A 21-item survey to measure parent expectations, involvement and satisfaction with their infant’s pain management in the NICU was developed specifically for this study (Table 1). The items were developed based on the American Pain Society’s (APS) patient pain management satisfaction survey and subsequent research that examine 5 dimensions of adult patient pain management satisfaction: outcome, overall quality, humanness, competence, bureaucracy, and informativeness.12,13,19 Face and content validity of the survey were established using a panel of experts in the fields of pain and quality improvement. Procedures A member of the project team approached parents at a quiet time while the parent was visiting the infant and informed them that parents were being asked to give their views on infant pain management in the NICU as part of an ongoing effort to improve the care provided to infants and families. Parents were given assurance that their responses would be anonymous and asked if they wished to participate. Parents who agreed to complete surveys were given brief instructions on the use of an automated survey box (Point of View Survey Systems, Denver, CO) or the paper
questionnaire. Parents completed the survey at the infant’s bedside or in a quiet room near the NICU, depending on their preference. Results Seventy-five parents completed the survey using the Point of View survey box, and 20 parents completed a paper version of the survey. Based on chi-square tests, there were no significant differences in the responses to any of the questions given by parents completing the survey by the two different methods. Therefore, findings are reported for the total sample. Five of the parents did not answer all of the questions. Results are reported as percentages of the total responses for each question. Eighty-five percent of parents believed their infant experienced pain while in the NICU (Table 2). The majority of parents (55%) felt that their infant experienced some pain, and 15% reported that their infant experienced a lot of pain. Parent reports of actual pain were consistent with reported levels of expected pain (Fig 1). Most parents (81%) reported that they received verbal information about pain control; only 12% stated that they received written information about pain control for their infant (Table 2). Parents received information only from nursing staff (34%) or from nursing and medical staff (45%). However, 16% of parents reported that no one talked with them about their infant’s pain. Although most parents reported satisfaction with the amount of information they received, 19% reported dissatisfaction. Forty-one percent of the parents reported that nurses showed them how to look for signs of pain in their infant (Table 2), and over one half (52%) of parents received instruction on at least one specific method of helping to make their infant more comfortable (Fig 2). A slight majority of parents (53%) stated they wished to remain at their infant’s bedside when painful procedures occurred; the rest
Table 2. Parent Views of Infant Pain in the NICU Item Pain assessment My baby has felt pain I received verbal information about pain control I received written information about pain control The nurses showed me how to look for signs of pain in my baby I felt confident the nurses could tell when my baby was in pain Pain management My baby received pain medication The medication helped my baby feel less pain My baby received calming medication I would prefer to stay at my baby’s bedside during painful procedures
Yes (%)
No (%)
Unsure (%)
85 81 12 41 89
10 19 88 59 11
5 0 0 0 0
82 70 57 53
8 0 12 47
10 30 31
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Fig 1. Parent perception of expected and actual infant pain: “How much pain has your baby felt?”
(47%) wished to leave the room during painful procedures (Table 2). Ten percent of parents did not know whether their infant received pain medication, and 30% did not know if the medication helped their infant feel less pain. Almost one third of parents (31%) did not know whether their infant received other calming drugs (Table 2). Over half (53%) of the sample reported they did not worry about medication side effects; however, 23% reported concern about addiction, 14% were concerned about respiratory failure, and 10% worried that their infant did not receive enough pain medication (Fig 3). Parents reported a high degree of confidence that nurses and doctors could detect pain in their infants, and they were generally satisfied with the pain management received.
However, a significant number of parents reported that they did not always feel supported by nurses and physicians with regard to their concerns about their infant’s pain (Fig 4). Although the anonymous survey method used in this survey may have encouraged participation, it did not allow for matching of individual responses with infant data so that the impact of the infant’s condition, length of time in the hospital, or other factors on parental views about infant pain could not be determined. Nor could it be determined if the parents who received less information were the ones who were less involved or less satisfied. Furthermore, because the survey was limited to parents with English literacy, the views of parents who do not read and write English are not reflected in the findings.
Fig 2. Parent involvement in infant pain management: “The nurse showed me how to use these comfort measures.”
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Fig 3. Parent concerns about infant pain management: “I was worried my baby would . . .”
CQI Strategies for Improving Parent Involvement in Infant Pain
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hese survey results provide a baseline assessment of parent views on infant pain and an evidence base to support the development of interventions to improve parent knowledge and involvement. Equally important, the process of conducting the survey showed parents that the staff were concerned about infant pain and were interested in the views of parents, and it provided opportunities for individual parents to express their concerns and questions to the NICU staff. The findings from this survey indicate that parents are aware of their infant’s pain and that NICU staff do communicate at least verbally with most parents about how infant pain will be managed. Parent involvement in pain assess-
ment and management varied, and parents differed in their preference to stay at the bedside or leave the unit during painful procedures. Through the survey, the NICU staff became aware of these differences in parent preferences and provided parents with information and choices regarding their level of participation. Based on the findings of a lack of written materials for parents, the NICU staff may develop a parent information sheet addressing some of the common concerns parents expressed about pain. The NICU staff may also adopt a policy of specifically asking parents whether they wish to be at the bedside during procedures and, if so, give them a means by which to participate in helping the infant.17 The NICU staff may also wish to provide education to staff about the most effective environmental and behavioral strategies to manage pain and develop methods of teaching these techniques to parents.30 Lastly, the NICU staff may incorporate specific pain assessment and management techniques into the discharge preparation for parents. Periodic re-audit of parent views will indicate if these interventions are effective and if these improvements can be sustained.
Parent Involvement in Infant Pain: The Research Agenda
F Fig 4. Parent satisfaction with infant pain care: “The nurses and doctors were supportive regarding my concerns about my baby’s pain.”
urther exploration of parent knowledge, involvement, and satisfaction with infant pain management in the NICU setting and interventions to improve parent knowledge and participation in their infant’s comfort are warranted. Qualitative research designs are needed to provide a better understanding of the meaning of infant pain for parents of critically ill infants. Quantitative designs can be used to test the effectiveness of interventions to improve the knowledge and participation of parents in identifying
Parent Views of Infant Pain
their infant’s signs of pain and in providing comfort to their infants. Longitudinal studies are needed to test the hypotheses that parent involvement in infant pain care in the NICU can attenuate the stress caused by loss of parental role associated with the infant’s hospitalization; enhance parentinfant attachment; or increase parenting competence on discharge of the infant from the NICU.
Conclusions
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ew guidelines and standards emphasize the importance of the family’s role in pain management. These guidelines provide the impetus for development of a more comprehensive approach to infant pain management, which takes into account the central role that parents will play in the ongoing assessment and management of the infant’s pain after discharge from the NICU. Individual NICUs can advance the quality of infant pain care by establishing an infant pain management CQI program to monitor and evaluate the effectiveness of the current pain care provided and by integrating parents in their infant’s pain care. Research regarding parent views of infant pain and the effectiveness of interventions to improve parent knowledge and involvement will provide the evidence base for ongoing improvement of practice.
Acknowledgments This work was conducted in part while Professor Franck was at the School of Nursing, University of California, San Francisco. The authors wish to thank Kelly Connell, CNIII, RN, Korrie McGinnis, CNII, RN, Mary Hart, CNIII, RN, and Elizabeth Rohnstock, CNIII, RN, for their assistance with data collection.
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