Parent views of infant pain and pain management in the neonatal intensive care unit

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-quality-improvement approach for enabling the involvement of parents in their infant's pain care is proposed, and specific strategies are suggested. Copyright © 2001 by W.B. Saunders Company     

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.     

Parent or nurse? The experience of being the parent of a technology‐dependent child

AIMS: This paper reports a study exploring parents' experiences of caring for a child who is dependent on medical technology, and in particular of performing clinical procedures on their own children. BACKGROUND: A group of children with a continuing need for the support of medical technology have emerged in community settings as a result of medical advances and government policies. Caring for these children has a significant social and emotional impact on parents, because of their specialized and intensive care needs. Obtaining appropriate and coordinated home support services is problematic. METHODS: Grounded theory techniques were used, and in-depth interviews were conducted with the parents of 24 children. FINDINGS: Parents' accounts revealed that their constructions of parenting were shaped by the nature of their role in caring for their child and by the transformation of their homes by medical equipment and personnel. They described themselves as having a role that had both parenting and nursing dimensions. Parents managed this tension and defined their role and relationship to their child to be primarily one of parenting by differentiating parental care-giving and its underpinning knowledge from that of professionals, particularly nurses. CONCLUSIONS: Parenting a technology-dependent child alters the meaning of parenting. Professionals need to recognize that providing care has a substantial emotional dimension for parents, and that they need opportunities to discuss their feelings about caregiving and what it means for their parenting identity and their relationship with their child. A key professional nursing role will be giving emotional support and supporting parents' coping strategies. Parents' perceptions of nurses raise questions about whether nurses' caregiving is individualized to the needs of the child and family, and whether parental expertise is recognized.     

Parental perspectives on end-of-life care in the pediatric intensive care unit

OBJECTIVE: To identify priorities for quality end-of-life care from the parents' perspective. DESIGN: Anonymous, self-administered questionnaire. SETTING: Three pediatric intensive care units in Boston. PARTICIPANTS: Parents of children who had died after withdrawal of life support. MEASUREMENT AND MAIN RESULTS: Parents' views of the adequacy of pain management, decision making, and social support during and after the death of their child were measured with the Parental Perspectives Questionnaire. Of 96 eligible households, 56 (58%) responded. In 90% of cases, physicians initiated discussion of withdrawal of life support, although nearly half of parents had considered it independently. Among decision-making factors, parents rated the quality of life, likelihood of improvement, and perception of their child's pain as most important. Twenty percent of parents disagreed that their children were comfortable in their final days. Fifty-five percent of parents felt that they had little to no control during their child's final days, and nearly a quarter reported that, if able, they would have made decisions differently. There were significant differences (p < .001) between the involvement of family, friends, and staff members at the time of death and greater agreement (p < .01) about the decision to withdraw support between parents and staff members than with other family members. CONCLUSIONS: Parents place the highest priorities on quality of life, likelihood of improvement, and perception of their child's pain when considering withdrawal of life support. Parents make such decisions and garner psychosocial support in the context of a social network that changes over time and includes healthcare professionals, family, and friends.     

Parents' perceptions of their child's acute pain experience

Painful procedures, experienced by many pediatric patients early in their admission, have been identified by parents in our clinical practice as a source of stress. The purpose of this study was to examine parents' perceptions and concerns about their child's acute pain experience. A convenience sample of 71 parents of 62 children was given a questionnaire that focused on the child's pain intensity, the behaviors that indicated the child was in pain, and the parents' preparation for and involvement in the child's pain experience. The majority of parents were asking for more information about and greater participation in procedures that caused their child pain.     

Parents' perceptions of their 1-6-year-old children's pain.

BACKGROUND OF THE STUDY: Parents' perceptions of children's pain may have influence on how children's postoperative pain is alleviated at home after discharge from hospital. PURPOSE OF THE STUDY: To describe parents' perceptions of 1-6-year-old children's pain. METHODS: Mothers (N=201) and fathers (N=114) whose child had undergone a day surgery in 10 Finnish central hospitals between October 2000 and September 2001 filled in a questionnaire including statements of pain perceptions, a Visual Analogue Scale to assess children's pain intensity and Parents' Postoperative Pain Measure (PPPM) to measure children's pain behaviours. RESULTS: Most of the parents suggested that adults have the responsibility to alleviate child's pain and that alleviation of child's postoperative pain prevents the child's fears during future visits in child welfare clinic. However, majority of parents described that postoperative pain decreases every day or that pain is always a part of surgery. Differences in parents' perceptions were found by both parents' and children's background variables. Parents' perceptions of children's pain were related to children's pain intensity and pain behaviours after surgery. CONCLUSIONS: Parents' perceptions of children's pain were related to children's pain after surgery at home. Adequate information of children's pain should be provided to the parents before discharge to promote children's pain alleviation at home. Special attention should be paid on parents' expectations of boys' higher pain tolerance.     

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     

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.     

Facilitation of parenting the premature infant within the newborn intensive care unit

A challenge facing neonatal health care providers is to combine technological intensive care for preterm infants with a sensitive and individualized approach facilitating neurobehavioral development while supporting parents in their roles as primary advocates and long-term caregivers. This exploratory study evaluated an individualized nursing intervention based on underlying assumptions of both infant and parent competence. The intervention enhanced parents' ability to appraise their infant's behavior critically and respond in a supportive manner. Study findings provide valuable information on the implications of an individualized nursing intervention both for further research and clinical practice.     

Parents' use of nonpharmacological methods to alleviate children's postoperative pain at home

STUDY BACKGROUND: Nonpharmacological methods are stated to be effective in alleviating children's postoperative pain when used as an adjuvant to analgesics. However, little is known about how these methods are used by parents at home. PURPOSE OF THE STUDY: The purpose of this study was to describe parents' use of nonpharmacological methods at home in 1-6-year-old children's pain alleviation after minor day surgery. METHODS: Mothers (n = 201) and fathers (n = 114) whose child had undergone day surgery in 10 Finnish hospitals between October 2000 and September 2001 filled in a questionnaire including a Visual Analogue Scale, Parents' Postoperative Pain Measure and a subscale consisting of 25 items measuring parents' use of several nonpharmacological pain alleviation methods with their children at home after day surgery. RESULTS: The most frequently used nonpharmacological pain alleviation methods were holding the child on the parent's lap, comforting the child and spending more time with them. Differences were found in mothers' and fathers' use of these methods. In addition, several methods were used more with girls than with boys. Significant relationships were found between parents' use of nonpharmacological pain alleviation methods and children's pain intensity and pain behaviour. CONCLUSIONS: Parents used several nonpharmacological pain alleviation methods with their children. However, their implementation seemed to be gender-related and limited to methods that were familiar to the parents from everyday life. The findings can be used in advising parents to use nonpharmacological pain alleviation methods at home after surgical procedures. Further research using experimental designs is needed into the effectiveness of these methods.     

Sleep and kangaroo care: clinical practice in the newborn intensive care unit: where the baby sleeps..

This article provides a review of a change in practice within a Level III neonatal intensive care unit setting. The use of skin-to-skin holding as a means to secure parents' attachment to their infant, and support their child's rest and recovery in the neonatal intensive care unit, has been recognized historically and supported by research in this practice. The importance of sleep to the infant's developmental outcome was recognized and the use of skin-to-skin holding as a means of increasing stable infant sleep and rest was implemented. The implementation was based on published research, current practice within the nursery, and staff and family discussions. Implementation of skin-to-skin holding earlier in the newborn's neonatal intensive care unit course was accomplished by increasing interactive education, support, and ongoing review of unit practices and outcomes. Education regarding sleep states and cues was a focus of the project and understanding infant sleep assisted the staff in recognizing levels of restful sleep or restless sleep in infants. The implications of sleep and infant success in achieving discharge to home allowed the staff to see not only their role in infant sleep but also the parents' role in their newborn infant's sleep and growth in the nursery.     

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.     

Comparisons of parent cardiovascular knowledge, attitudes, and behaviors based on screening and perceived child risks

Questionnaire reports and universal screening procedures from 244 children (kindergarten, 5th grade, and 9th grade) were used to explore differences in parent health knowledge and attitudes of cardiovascular risks among children and parental involvement in promoting healthy lifestyles relative to whether their children were identified as being overweight or at risk of being overweight. The knowledge, attitudes, and behaviors of the parents of children who were identified as being at risk or overweight were further examined based on their perceptions of their children's level of risk. Parents' reports demonstrated significantly greater parent encouragement and knowledge of issues related to eating healthier foods and ways to cut calories among parents of children who were identified as being at risk or already overweight. A significant portion of parents underestimated their children's weight risks. Differences in parents' appraisals of their children's overweight risks were associated with differences in their knowledge, attitudes, and behaviors. These findings illustrate the need to address inaccuracies in parents' assessments of their children's overweight risks to improve parent investment and involvement in children's health modification programs.     

Parental emotional responses to their child's pain: the role of dispositional empathy and catastrophizing about their child's pain.

Little is known about how a child's experience of pain affects his or her parents. Using a vignette methodology, this study investigated the emotional responses of parents who were asked to imagine different painful situations that their child might experience. A sample of 650 parents of school children (325 mothers; 325 fathers) read 8 short stories/vignettes about their child, which varied in terms of type of situation (pain vs other stressful situation), intensity (high vs low), and frequency of occurrence (high vs low). The role of individual differences in parental catastrophizing about their child's pain, catastrophizing about their own pain, dispositional empathy, and gender was also investigated. Parents' dispositional empathy was found to have an impact on parental distress and concern for their child. Catastrophizing about their child's pain had a unique contribution to parents' emotional responses to the vignettes describing their child in pain, beyond the influence of other variables. The impact of parental catastrophizing about their child's pain was most pronounced for parental distress, probably reflecting the high threat value that they attribute to their child's pain. The findings are discussed within recent models of empathy and pain, delineating possible relationships with parents' behavioral responses to their child's pain. PERSPECTIVE: This vignette study found preliminary evidence for the importance of parent characteristics, beyond situational characteristics, in parental emotional responses to their child's pain. The findings provide indications for the processes implied in parental helping behavior.     

家长对幼儿口腔保健认知水平的调查分析与对策

目的：探讨家长对幼儿的口腔卫生保健知识的水平，以便提出相应的护理对策；方法：通过整体抽样方法抽取幼儿家长300人，采用问卷调查法对口腔卫生保健相关问题进行调查，并对调查结果进行统计分析。结果：50％左右的家长对幼儿的口腔卫生保健相关知识有所了解，但只有2．8％的家长对幼儿进行正确培养与实施。结论：家长对幼儿口腔卫生保健重要性认识不足，需加强对家长的口腔卫生保健知识的宣传，提高其认知水平。     

Anxiety and postoperative pain in children who undergo major orthopedic surgery.

Anxiety and pain are major concerns not only for children who undergo surgery, but also for their parents and health care professionals. A convenience sample of 74 adolescents who underwent major orthopedic surgery for repair of idiopathic scoliosis and their parents was used to investigate the relationships among children's and parents' preoperative and postoperative anxiety and children's postoperative pain. Age-appropriate versions of Spielberger's State-Anxiety scales measured children's and parents' anxiety, and a visual analog scale assessed children's pain intensities. Children's state anxiety increased from preoperative to postoperative levels, and their postoperative anxiety levels positively related to their pain intensities on days 2 and 4 following the operation. Parents' anxiety decreased from preoperative to postoperative levels, and their postoperative anxiety positively related to their children's postoperative anxiety. Studying both parents and children helped to explain the variance in children's self-reported anxiety. Parents' emotional states are important indicators of children's emotional states and, subsequently, their pain experience. The results of this study suggest that allowing children to assist in the assessment of their postoperative pain may help health care professionals better understand the subjective component of pain. The findings also emphasize the importance of including parents in future studies in which the aim is to understand children's behavioral responses and recovery outcomes.