Parents' perceptions of their infant's pain experience in the NICU

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=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=6). An exploratory, semi-structured format was used to interview parents individually (n=5) or in focus groups (n=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.     

Parents' views about infant pain in neonatal intensive care

OBJECTIVE: The purpose of this study was to describe parents' perceptions and feelings about their infant's pain experience and pain care in the neonatal intensive care unit. METHOD: Thematic content analysis was used to encode the qualitative information contained in parents' written comments on a questionnaire about their views on infant pain and pain care. The questionnaire was completed by 257 parents from 9 neonatal units in the United Kingdom (n = 196) and 2 neonatal units in the United States (n = 61). RESULTS: Parents' comments indicated that they saw medical procedures as the major source of their infant's pain, wanted more information, and generally desired more involvement in this aspect of their infant's care. Parents' comments indicated that their infant's pain affected them emotionally and that they worried about their future relationship with their infant. Parents also articulated specific ways in which health care professionals could assist them and their infants in coping with neonatal intensive care unit-related pain. DISCUSSION: The findings from this study expand knowledge about how parents understand and respond to the difficult situation in which their newborn infant is subjected to essential but painful procedures. The findings provide direction for research and clinical practice interventions aimed at: 1) helping parents to gain knowledge and correct their misperceptions; 2) engaging parents in meaningful dialog about their concerns and preferences for involvement; and 3) helping parents to develop effective coping strategies to reduce psychologic distress related to their infant's pain.     

Parent involvement in children''s pain care: views of parents and nurses

AIM OF THE STUDY: This study investigated the views of parents and nurses about the involvement of parents in the management of their child's pain during the first 48 hours after surgery. BACKGROUND: Children's pain management has been found to be problematic and in need of improvement. Nurses are the key health care professionals with responsibility for managing children's pain. Parents can make important contributions to assessment and management of their child's pain. METHODS: Using a phenomenological approach, nurses and parents were interviewed about their perceptions of parent involvement in pain management. FINDINGS: The findings indicated that parental involvement in their child's pain management is superficial and limited in nature. Parents described a passive role in relation to their child's pain care and conveyed feelings of frustration. Only a minority of parents expressed satisfaction with their child's pain care. Nurses perceived that there was adequate involvement of parents and adequate pain management for children. CONCLUSIONS: These findings may be somewhat explained by differing views and a lack of effective communication between parents and nurses. There is a clear need for nurses to discuss parent involvement with parents and negotiate roles in relation to pain management.     

The role of fathers in supporting the development of their NICU infant

Contemporary models of NICU care emphasize the critical role of parents in supporting their infant's development. Fathers play an important, but underutilized, role throughout their infant's NICU journey. This narrative review describes the main direct and indirect mechanisms through which fathers support the development of their NICU infant, and the barriers and facilitators to this support as described in current research. Studies have identified several mechanisms through which fathers can directly enhance their infant's health and development. Several studies described the benefits of fathers providing kangaroo care, but infant-directed speech, tactile stimulation, and parent scent also appear to yield developmental benefits. However, most of the literature focused on the indirect ways that fathers support their infants through the coparenting alliance, assuming additional responsibilities that allow mothers to spend more time engaged in infant care, and by providing financial support for the family. Reduced access to the NICU setting has been identified as a key barrier to fathers' direct involvement in infant care, which has been further exacerbated due to additional restrictions imposed due to the COVID-19 pandemic. Additionally, negative perceptions held by fathers, mothers, and nursing staff regarding the role of fathers in preterm infant care may also represent a barrier to fathers' engagement. Nursing staff were identified as playing a crucial role in promoting fathers' capacity to support the development of their infants. This research can help to inform interventions and policies geared toward optimizing infant development by improving the involvement of fathers during a NICU admission, and beyond.     

Coping and caring in different ways: understanding and meaningful involvement

The experience of having a baby in the neonatal intensive care unit (NICU) is frightening and creates uncertainty for families. Each parent copes with the challenge in his or her own way. Nurses can play an important role in helping parents find their own unique paths to meaningful involvement in caring for their infant by utilizing five frameworks in the assessment and planning process. The frameworks include: (a) family-centered care, (b) a cultural context, (c) loss and grief issues, (d) personal style considerations, and (e) reflections on the caregiver's own value system. The stories of three families illustrate individual coping styles and the application of these frameworks in understanding family coping in the NICU. A list of suggested questions identifying family background and strengths can assist in applying the five frameworks in assessment. A list of areas of potential parental involvement can assist nurses in helping families determine the ways in which they would like to be involved in their infant's care while in the NICU.     

Developmentally supportive care in the newborn intensive care unit: early intervention in the community

The traditional focus of hospital nurses on the medical concerns of infants and toddlers is expanding to encompass the more global view that integrates the developmental level of each infant/toddler into the nursing care plan. Research on early brain development has supported the focus on developmentally supportive care in the NICU. Nursing support of the early relationship between infant and parent that will influence the infant's future development is part of this process. The integration of developmental care concepts including family-centered care that begins on admission to the NICU may continue into the process of discharge and transition to home. The nurse is in an excellent position to support the family in naming their concerns, their strengths, and the hopes and dreams they have for their infant. Nurses in the NICU, home care, community, and public health increasingly focus on a developmental perspective in their work but will be continually challenged to increase their knowledge and understanding of developmental milestones, neurodevelopmental assessment, and their role in collaborating with the wider world of early intervention. This collaboration includes the health care system, the educational system, and the social service system as equal players. For some nurses, this will be a new experience whereby the responsibility for the child is shared among members of an interdisciplinary team that includes the parents. Nurses are key to providing developmentally supportive care and working collaboratively on behalf of the infants and toddlers and their families.     

Rush SpecialKare Keepsakes

When an infant is admitted to a neonatal intensive care unit (NICU), parents seldom have the opportunity to celebrate special events in the infant's life within the context of the family. Our Rush SpecialKare Keepsakes is a program for parents of NICU infants that combines therapeutic photography, journaling, and memento preservation, with the goal of documenting the infant's birth and place within the family. The program has two distinct components: weekly scrapbooking sessions, which are free of charge to all NICU families; and Holiday Family Photo Shoots, in which infants are photographed with their family members to celebrate traditional holidays throughout the year. The program, which was conceived and implemented in January 2001, is under the direction of two NICU bedside nurses, who blend scrapbooking techniques with clinical expertise, so that weekly scrapbooking sessions are transformed into a unique type of parent support group. Data from the first 6 months of the program indicate that all 173 parent participants overwhelmingly appreciated the opportunity to attend these sessions, which they perceived as a brief respite from the NICU and an opportunity to interact with other families.     

The neonatal intensive care unit environment: sources of stress for parents

Many aspects of neonatal intensive care units (NICUs) are stressful to parents, including prolonged hospitalization, alterations in parenting, exposure to a technical environment, and the appearance of their small, fragile infant. To identify potential NICU stressors for parents, levels of stress these experiences engender, and their relationship to anxiety, parents of infants hospitalized in three NICUs were interviewed using the Parental Stressor Scale: NICU and the State-Trait Anxiety Inventory. Alterations in parental role caused by the infant's illness generated the greatest stress. The second highest areas of stress were the infant's appearance and behavior. State anxiety levels were higher than normative means and significantly related to stress scores.     

Parent stress in the neonatal intensive care unit and the influence of parent and infant characteristics.

OBJECTIVE: This study investigated the stress experienced by parents in the neonatal intensive care unit (NICU), the infant and parent characteristics that resulted in different stress responses, and the characteristics that were predictive of stress. METHOD: The Parental Stress Scale: Neonatal Intensive Care Unit was used to measure the stress of 162 parents. A Parent/Infant Demographic sheet provided information for determining which characteristics resulted in different responses and which variables were stress predictors. RESULTS: The highest levels of stress experienced were in the relationship with baby-parental role area, and regarding how the baby looked and behaved. The infant characteristic of gestational age resulted in significantly different scores concerning the baby's appearance and behavior. Consistent predictors of stress were length of stay, extreme prematurity, and a cardiovascular diagnosis. CONCLUSION: Identifying the stressors parents experience can assist NICU therapists in intervention planning. Family-centered care that addresses stressors concerning their roles and their understanding of their infant should be emphasized.     

Comfort care for infants in the neonatal intensive care unit at end of life

When the death of a baby becomes inevitable, the greatest priority of care is to provide pain relief and comfort for the dying infant. Physical, environmental, and social needs are derived from assessment and knowledge of the infant's stage of development and the context of the individual infant's experiences within the neonatal intensive care unit. Assessment parameters for pain often rely on physiologic measures at end of life (EOL), whereas comfort is assessed through physiologic/autonomic, motor, and state behavioral cues exhibited by the infant. EOL care is best provided by using an integrated interdisciplinary, palliative approach in partnership with the infant's parents. Although opioids remain central to EOL care, nonpharmacologic measures for pain relief and comfort enhancement may provide additive or synergistic benefits. A case example applies the concepts of comfort care to an extremely preterm infant at EOL. Copyright © 2001 by W.B. Saunders Company     

Contextual dynamics of ethical decision making in the NICU

The manner in which the contextual dynamics of the neonatal intensive care unit (NICU) culture influence decisions around withholding and withdrawing treatment for very low birth weight infants is examined based on sociological studies of the NICU culture. The influence of these dynamics on nurse and parent participation in treatment decisions is discussed. Steps toward increasing nurses' role in decision making and ability to empower the participation of parents include (a) using an understanding of the dynamics of the individual NICU to establish a collaborative team culture, and (b) demonstrating that data obtained through relationship with the infant make an important and valid contribution to ethical decision making.     

Bereaved Parents' Perceptions of Infant Suffering in the NICU

ContextIt is challenging to provide supportive intensive care to infants in the neonatal intensive care unit (NICU), giving them every chance for survival, while also trying to minimize suffering for both the infant and parents. Parents who believe their infant is suffering may alter treatment goals based on their perceptions; however, it is unknown how parents come to believe that their infant may be suffering.ObjectivesTo examine bereaved parents' perceptions of infant suffering in the NICU.MethodsParents completed a qualitative interview exploring their perceptions of the level of suffering that their infant experienced at the end of life. Parents whose infant died in a large Midwestern Level IV regional referral NICU from July 2009 to July 2014 were invited to participate. Thirty mothers and 16 fathers from 31 families (31 of 249) participated in telephone interviews between three months and five years after their infant's death.ResultsFour themes emerged from the qualitative analysis: 1) the presence/absence of suffering, 2) indicators of suffering, 3) temporal components of suffering (trajectory), and 4) influence of perceived suffering on parents, infants, and clinical decision making.ConclusionParents used signs exhibited by infants, as well as information they received from the health care team to form their perceptions of suffering. Perceived suffering followed different trajectories and influenced the decisions that parents made for their infant. Soliciting parent perspectives may lead to improvements in the understanding of infant well-being, particularly suffering, as well as how parents rely on these perceptions to make treatment decisions for their infant.     

Parenting the NICU infant: A meta-ethnographic synthesis

Parenting the infant in the neonatal intensive care unit (NICU) comes with a multitude of unique challenges, and NICU parents are often unprepared and ill equipped for the challenges. Moreover, a gap in the literature still exists concerning a full understanding of the breadth of the process parents of NICU infants undergo from the time of admission to discharge. This study utilized Noblit and Hare's meta-ethnography synthesis method for literature extraction and data analysis to illuminate the NICU parenting process by metaphorically comparing the process to Patricia Benner's novice to expert theory. Fourteen studies including 12 published qualitative research articles and 2 dissertations from the nursing discipline were included in the analysis. Findings illuminated the process of becoming a NICU parent more fully and revealed the most salient and effective facilitators of the process from being a novice and advanced beginner to becoming a competent, proficient, even expert NICU parent. In addition, this paper discusses four influencing factors in a NICU parent's progression: contact with and proximity to their infant, relationship with the nurse, having information, and social support. Nurses must engage with NICU parents in such a way as to maximize the likelihood that these parents will reach at minimum the proficient and at maximum the expert parenting stage by discharge.     

Benefits of Infant Massage for Infants and Parents in the NICU

Infant massage is an ancient therapeutic technique used around the world. For infants who experience painful procedures, are exposed to the stressful NICU environment, and are separated from their parents, infant massage has been promoted as a method to reduce stress and promote bonding. In this article, we review the current literature on infant massage in the NICU. There is evidence that infant massage has beneficial effects on preterm infants in the NICU, including shorter length of stay; reduced pain; and improved weight gain, feeding tolerance, and neurodevelopment. Parents who performed massage with their infants in the NICU reported experiencing less stress, anxiety, and depression. Neonatal nurses can obtain education and certification in infant massage and can teach parents infant massage techniques, thereby promoting the health and well-being of parent–infant dyads.     

Case study of an educational intervention to favor siblings’ adaptation during the hospitalization of a preterm infant in the neonatal intensive care unit

Hospitalization of a preterm infant in the Neonatal Intensive Care Unit (NICU) places additional strain on the family and influences the siblings' adaptation. Although it is essential to support the siblings’ adaptation and provide family-centered care in the NICU, sibling involvement is rarely integrated into nursing care. An evidence-based intervention was therefore developed in a level-III NICU and its impact on sibling adaptation was evaluated using a Case study in which three families with a hospitalized infant and siblings between 3 and 12 years old participated. The parents were asked to consult a website and attend a 30-min educational session on issues related to sibling adaptation, and the siblings received a structured introduction to the NICU and visited the preterm infant. All three families were satisfied with the activities, although two parents felt neutral about whether the intervention met their expectations. Overall, the intervention seems to have the potential to facilitate sibling adaptation during the experience of a NICU hospitalization.     

The efficacy of facilitated tucking for relieving procedural pain of endotracheal suctioning in very low birthweight infants

PURPOSE: This study compared the efficacy of a behavioral pain reducing intervention (facilitated tucking) with standard neonatal intensive care unit (NICU) care for decreasing procedural pain (endotracheal suctioning) in very low birthweight (VLBW) infants. STUDY DESIGN AND METHODS: A prospective randomized crossover design with infants as their own controls were used. The sample consisted of 40 VLBW infants, 23-32 weeks gestation, and weighing 560-1498 g with tracheal intubation. The infants were observed twice during each endotracheal suctioning experience; one suctioning was done according to normal nursery routine; another was done using facilitated tucking (the caregiver "hand-swaddling" the infant by placing a hand on the infant's head and feet while providing flexion and containment). The Premature Infant Pain Profile (PIPP) measured the infant's pain response, and severity of illness of each infant was measured by the Score for Neonatal Acute Physiology (SNAP) and the NTISS (Neonatal Therapeutic Intervention Scoring System). Repeated measures analysis of variance (RMANOVA) determined the efficacy of facilitated tucking for reducing procedural pain (PIPP) and the effects of order of intervention vs. control. Regression analyses examined the relationship of gestational age, severity of illness, and number of painful procedures to the pain response. RESULTS: There was a significant difference between the PIPP scores for tucking and nontucking positions (p = 0.001) and a nonsignificant interaction with order (p = 0.64) as well as a nonsignificant main effect for order (p = 0.46). In the regression analyses, all predictors taken together did not significantly predict PIPP scores in the tucked position (p = 0.11) or nontucked position (p = 0.57). CLINICAL IMPLICATIONS: Facilitated tucking is a developmentally sensitive, nonpharmacological comfort measure that can relieve procedural pain in VLBW infants. Nurses need to be increasingly aware of infant pain during daily care taking, and to use validated pain assessment instruments. Further clinical research on individual pain assessment is needed for better understanding of the quality and significance of pain for each infant, and the factors that affect pain expression.     

Family-centered care in the NICU

Family-centered care is a philosophy of care that embraces a partnership between staff and families. Families, patients, and staff benefit in a family-centered care environment and the design of the newborn intensive care unit (NICU) must not interfere with its successful implementation. Unrestricted parental presence in the NICU, parental involvement in infant caregiving, and open communication with parents are basic tenets of family-centered care. By virtue of their continual presence and role in the NICU, nurses are in a unique position to support family-centered care.