Long-term effects of pain in infants

Pain and stress have been shown to induce significant physiological and behavioral reactions in newborn infants, even in those born prematurely. Infants who are born prematurely or seriously ill are commonly exposed to multiple painful and stressful events as part of their prolonged hospitalizations and required medical procedures. There is now evidence that these early events not only induce acute changes, but that permanent structural and functional changes may also result. This article reviews the growing body of evidence of likely long-term effects of early pain and stress on the human infant. It is hoped that a better understanding of this literature will promote more responsive and sensitive management of infants and young children during their encounters with the medical community and will ultimately facilitate the healthy growth and development of all children.

Bedside application of the Neonatal Facial Coding System in pain assessment of premature neonates

Assessment of infant pain is a pressing concern, especially within the context of neonatal intensive care where infants may be exposed to prolonged and repeated pain during lengthy hospitalization. In the present study the feasibility of carrying out the complete Neonatal Facial Coding System (NFCS) in real time at bedside, specifically reliability, construct and concurrent validity, was evaluated in a tertiary level Neonatal Intensive Care Unit (NICU). Heel lance was used as a model of procedural pain, and observed with n = 40 infants at 32 weeks gestational age. Infant sleep/wake state, NFCS facial activity and specific hand movements were coded during baseline, unwrap, swab, heel lance, squeezing and recovery events. Heart rate was recorded continuously and digitally sampled using a custom designed computer system. Repeated measures analysis of variance (ANOVA) showed statistically significant differences across events for facial activity (P <0.0001) and heart rate (P <0.0001). Planned comparisons showed facial activity unchanged during baseline, swab and unwrap, then increased significantly during heel lance (P <0.0001), increased further during squeezing (P <0.003), then decreased during recovery (P <0.0001). Systematic shifts in sleep/wake state were apparent. Rise in facial activity was consistent with increased heart rate, except that facial activity more closely paralleled initiation of the invasive event. Thus facial display was more specific to tissue damage compared with heart rate. Inter-observer reliability was high. Construct validity of the NFCS at bedside was demonstrated as invasive procedures were distinguished from tactile. While bedside coding of behavior does not permit raters to be blind to events, mechanical recording of heart rate allowed for an independent source of concurrent validation for bedside application of the NFCS scale.

Judging pain in infants:behavioural, contextual, and developmental determinants

Caretakers intuitively use various sources of evidence when judging infant pain, but the relative importance of salient cues has received little attention. This investigation examined the predictive significance for judgements of painful discomfort in preterm and full-term neonates of behavioural (facial activity and body movement), contextual (invasiveness of the procedure), and developmental (gestational age) information. Judges viewed videotapes showing infants varying in the foregoing characteristics undergoing heel incisions for routine blood sampling purposes. Findings indicated all but the contextual information contributed uniquely to judgements of pain, with facial activity accounting for the most unique variance (35%), followed by bodily activity and gestational age, each accounting for 3% and 1% of the judgmental variance, respectively. Generally, 71% of the variance in ratings of pain could be predicted using facial activity alone, compared to 30% of the variance using bodily activity alone, 19% by relying on context alone, and 8% by referring to gestational age alone. Noteworthy was the tendency to judge early preterm infants to be experiencing less pain even though they were subjected to the same invasive procedure as the older infants. This finding also runs counter to evidence from developmental neurobiology which indicates that preterm newborns may be hypersensitive to invasive procedures.

The expression of pain in infants and toddlers:developmental changes in facial action

Age-related changes in the facial expression of pain during the first 18 months of life have important implications for our understanding of pain and pain assessment. We examined facial reactions video recorded during routine immunization injections in 75 infants stratified into 2-, 4-, 6-, 12-, and 18-month age groups. Two facial coding systems differing in the amount of detail extracted were applied to the records. In addition, parents completed a brief questionnaire that assessed child temperament and provided background information. Parents' efforts to soothe the children also were described. While there were consistencies in facial displays over the age groups, there also were differences on both measures of facial activity, indicating systematic variation in the nature and severity of distress. The least pain was expressed by the 4-month age group. Temperament was not related to the degree of pain expressed. Systematic variations in parental soothing behaviour indicated accommodation to the age of the child. Reasons for the differing patterns of facial activity are examined, with attention paid to the development of inhibitory mechanisms and the role of negative emotions such as anger and anxiety.

Issues of assessment of pain and discomfort in neonates

Pain assessment in neonates often presents problems. The problem of inadequate or inaccurate assessment is complicated by issues related to the nature, consistency, and variability of the infant's physiologic and behavioral responses; the reliability, validity, specificity, sensitivity, and practicality of existing neonatal pain measures or measurement approaches; ethical questions about pain research in infants; and uncertainty about the responsibilities of health care professionals in managing pain in clinical settings. Despite these many issues, neonates need to be comfortable and as free of pain as possible to grow and develop normally. Valid and reliable assessment of pain is the major prerequisite for attaining this goal. Issues embodied in neonatal pain responses, measurement, ethical, and clinical considerations are explored. Suggestions for resolving some of these problems are presented.

Pain sensitivity and temperament in extremely low-birth-weight premature toddlers and preterm and full-term controls

High-technology medical care of extremely low-birth-weight (ELBW) infants (<1001 g) involves repeated medical interventions which are potentially painful and may later affect reaction to pain. At 18 months corrected age (CCA), we examined parent ratings of pain sensitivity and how pain sensitivity ratings related to child temperament and parenting style in 2 groups of ELBW children (49 with a birth weight of 480-800 g and 75 with a birth weight of 801-1000 g) and 2 control groups (42 heavier preterm (1500-2499 g) and 29 full-birth-weight (FBW) children (> 2500 g). Both groups of ELBW toddlers were rated by parents as significantly lower in pain sensitivity compared with both control groups. The relationships between child temperament and pain sensitivity rating varied systematically across the groups. Temperament was strongly related to rated pain sensitivity in the FBW group, moderately related in the heavier preterm and ELBW 801-1000 g groups, and not related in the lowest birth-weight group (<801 g). Parental style did not mediate ratings of pain sensitivity. The results suggest that parents perceive differences in pain behavior of ELBW toddlers compared with heavier preterm and FBW toddlers, especially for those less than 801 g. Longitudinal research into the development of pain behavior for infants who experience lengthy hospitalization is warranted.

Judging pain in newborns:facial and cry determinants

Explored the facial and cry characteristics that adults use when judging an infant's pain. Sixteen women viewed videotaped reactions of 36 newborns subjected to noninvasive thigh rubs and vitamin K injections in the course of routine care and rated discomfort. The group mean interrater reliability was high. Detailed descriptions of the infants' facial reactions and cry sounds permitted specification of the determinants of distress judgments. Several facial variables (a brow bulge, eyes squeezed shut, and deepened nasolabial fold constellation, and taut tongue) accounted for 49% of the variance in ratings of affective discomfort after controlling for ratings of discomfort during a noninvasive event. In a separate analysis not including facial activity, several cry variables (formant frequency, latency to cry) also accounted for variance (38%) in ratings. When the facial and cry variables were considered together, cry variables added little to the prediction of ratings in comparison to facial variables. Cry would seem to command attention, but facial activity, rather than cry, can account for the major variations in adults' judgments of neonatal pain.

A comparison of two measures of facial activity during pain in the newborn child

Facial activity is strikingly visible in infants reacting to noxious events. Two measures that reduce this activity to composite events, the Neonatal Facial Coding System (NFCS) and the Facial Action Coding System (FACS), were used to examine facial expressions of 56 neonates responding to routine heel lancing for blood sampling purposes. The NFCS focuses upon a limited subset of all possible facial actions that had been identified previously as responsive to painful events, whereas the FACS is a comprehensive system that is inclusive of all facial actions. Descriptions of the facial expressions obtained from the two measurement systems were very similar, supporting the convergent validity of the shorter, more readily applied system. As well, the cluster of facial activity associated with pain in this sample, using either measure, was similar to the cluster of facial activity associated with pain in adults and other newborns, both full-term and preterm, providing construct validity for the position that the face encodes painful distress in infants and adults.

Pain in the preterm neonate:behavioural and physiological indices

The impact of invasive procedures on preterm neonates has received little systematic attention. We examined facial activity, body movements, and physiological measures in 56 preterm and full-term newborns in response to heel lancing, along with comparison preparatory and recovery intervals. The measures were recorded in special care and full-term nurseries during routine blood sampling. Data analyses indicated that in all measurement categories reactions of greatest magnitude were to the lancing procedure. Neonates with gestational ages as short as 25-27 weeks displayed physiological responsivity to the heel lance, but only in the heart rate measure did this vary with gestational age. Bodily activity was diminished in preterm neonates in general, relative to full-term newborns. Facial activity increased with the gestational age of the infant. Specificity of the response to the heel lance was greatest on the facial activity measure. Identification of pain requires attention to gestational age in the preterm neonate.

Developmental changes in pain expression in premature, full-term, two- and four-month-old infants

The purpose of this study was to examine the behavioural responses of infants to pain stimuli across different developmental ages. Eighty infants were included in this cross-sectional design. Four subsamples of 20 infants each included: (1) premature infants between 32 and 34 weeks gestational age undergoing heel-stick procedure; (2) full-term infants receiving intramuscular vitamin K injection; (3) 2-month-old infants receiving subcutaneous injection for immunisation against DPT; and (4) 4-month-old infants receiving subcutaneous injection for immunisation against DPT. Audio and video recordings were made for 15 sec from stimulus. Cry analysis was conducted on the first full expiratory cry by FFT with time and frequency measures. Facial action was coded using the Neonatal Facial Action Coding System (NFCS). Results from multivariate analysis showed that premature infants were different from older infants, that full-term newborns were different from others, but that 2- and 4-month-olds were similar. The specific variables contributing to the significance were higher pitched cries and more horizontal mouth stretch in the premature group and more taut tongue in the full-term newborns. The results imply that the premature infant has the basis for communicating pain via facial actions but that these are not well developed. The full-term newborn is better equipped to interact with his caretakers and express his distress through specific facial actions. The cries of the premature infant, however, have more of the characteristics that are arousing to the listener which serve to alert the caregiver of the state of distress from pain.

Pain expression in neonates:facial action and cry

Pain expression in neonates instigated by heel-lance for blood sampling purposes was systematically described using measures of facial expression and cry and compared across sleep/waking states and sex. From gate-control theory it was hypothesized that pain behavior would vary with the ongoing functional state of the infant, rather than solely reflecting tissue insult. Awake-alert but inactive infants responded with the most facial activity, consistent with current views that infants in this state are most receptive to environmental stimulation. Infants in quiet sleep showed the least facial reaction and the longest latency to cry. Fundamental frequency of cry was not related to sleep/waking state. This suggested that findings from the cry literature on qualities of pain cry as a reflection of nervous system 'stress', in unwell newborns, do not generalize directly to healthy infants as a function of state. Sex differences were apparent in speed of response, with boys showing shorter time to cry and to display facial action following heel-lance. The findings of facial action variation across sleep/waking state were interpreted as indicating that the biological and behavioral context of pain events affects behavioral expression, even at the earliest time developmentally, before the opportunity for learned response patterns occurs. Issues raised by the study include the importance of using measurement techniques which are independent of preconceived categories of affective response.

Identifying educational needs in end-of-life care for staff and families of residents in care facilities.

AIM: the purpose of this article is to describe educational needs in end-of-life (EoL) care for staff and families of residents in long-term care (LTC) facilities in the province of Ontario, Canada. Barriers to providing end-of-life care education in LTC facilities are also identified. DESIGN, SETTING AND PARTICIPANTS: cross-sectional survey of directors of care in all licensed LTC facilities in the province of Ontario, Canada. RESULTS: directors of care from 426 (76.9% response rate) licensed LTC facilities completed a postal-survey questionnaire. Topics identified as very important for staff education included pain and symptom management and communication with family members about EoL care. Priorities for family education included respecting the residents' expressed wishes for care and communication about EoL care. Having sufficient institutional resources was identified as a major barrier to providing continuing education to both staff and families. CONCLUSION: through examining educational needs in EoL care this study identified an environment of inadequate staffing and over-burdened care providers. The importance of increased staffing concomitant with education is a priority for LTC facilities.

Resource utilization and cost analyses of home-based palliative care service provision:The Niagara West End-of-Life Shared-Care Project

Background: Increasing emphasis is being placed on the economics of health care service delivery - including home-based palliative care. Aim: This paper analyzes resource utilization and costs of a shared-care demonstration project in rural Ontario (Canada) from the public health care system's perspective. Design: To provide enhanced end-of-life care, the shared-care approach ensured exchange of expertise and knowledge and coordination of services in line with the understood goals of care. Resource utilization and costs were tracked over the 15 month study period from January 2005 to March 2006. Results: Of the 95 study participants (average age 71 years), 83 had a cancer diagnosis (87%); the non-cancer diagnoses (12 patients, 13%) included mainly advanced heart diseases and COPD. Community Care Access Centre and Enhanced Palliative Care Team-based homemaking and specialized nursing services were the most frequented offerings, followed by equipment/transportation services and palliative care consults for pain and symptom management. Total costs for all patient-related services (in 2007 CAN) were 1,625,658.07 - or 17,112.19 per patient/117.95 per patient day. Conclusion: While higher than expenditures previously reported for a cancer-only population in an urban Ontario setting, the costs were still within the parameters of the US Medicare Hospice Benefits, on a par with the per diem funding assigned for long-term care homes and lower than both average alternate level of care and hospital costs within the Province of Ontario. The study results may assist service planners in the appropriate allocation of resources and service packaging to meet the complex needs of palliative care populations. © 2012 The Author(s).

A shared care model pilot for palliative home care in a rural area:Impact on symptoms, distress, and place of death

Context: Shared care models integrating family physician services with interdisciplinary palliative care specialist teams are critical to improve access to quality palliative home care and address multiple domains of end-of-life issues and needs. Objectives: To examine the impact of a shared care pilot program on the primary outcomes of symptom severity and emotional distress (patient and family separately) over time and, secondarily, the concordance between patient preferences and place of death. Methods: An inception cohort of patients (n = 95) with advanced, progressive disease, expected to die within six months, were recruited from three rural family physician group practices (21 physicians) and followed prospectively until death or pilot end. Serial measurement of symptoms, emotional distress (patient and family), and preferences for place of death was performed, with analysis of changes in distress outcomes assessed using t-tests and general linear models. Results: Symptoms trended toward improvement, with a significant reduction in anxiety from baseline to 14 days noted. Symptom and emotional distress were maintained below high severity (7-10), and a high rate of home death compared with population norms was observed. Conclusion: Future controlled studies are needed to examine outcomes for shared care models with comparison groups. Shared care models build on family physician capacity and as such are promising in the development of palliative home care programs to improve access to quality palliative home care and foster health system integration. © 2011 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

Managing palliative care for adults with advanced heart failure

The purpose of this study was to explore the care processes experienced by community-dwelling adults dying from advanced heart failure, their family caregivers, and their health-care providers. A descriptive qualitative design was used to guide data collection, analysis, and interpretation. The sample comprised 8 patients, 10 informal caregivers, 11 nurses, 3 physicians, and 3 pharmacists. Data analysis revealed that palliative care was influenced by unique contextual factors (i.e., cancer model of palliative care, limited access to resources, prognostication challenges). Patients described choosing interventions and living with fatigue, pain, shortness of breath, and functional decline. Family caregivers described surviving caregiver burden and drawing on their faith. Health professionals described their role as trying to coordinate care, building expertise, managing medications, and optimizing interprofessional collaboration. Participants strove towards 3 outcomes: effective symptom management, satisfaction with care, and a peaceful death. © McGill University School of Nursing.