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.     

Validity of Parent Ratings as Proxy Measures of Pain in Children with Cognitive Impairment

Parent-assigned pain scores have been used as proxy measures of pain for children, such as those with cognitive impairment (CI), who cannot self-report. However, the accuracy of parent-assigned pain ratings for children with CI has not been studied. This study evaluated the construct and criterion validity of parental pain scores of children with CI. Fifty-two children aged 4 to 19 years with CI and their parents/guardians were included in this observational study. Children were observed and assessed for pain by parents using the Faces, Legs, Activity, Cry, and Consolability (FLACC) observational tool and the 0 to 10 Numbers Scale, and simultaneously by nurses using the FLACC. Children who were cognitively able scored pain using simplified scales. Parent scores decreased after analgesic administration (6.4 +/- 2.5 vs. 3.1 +/- 2.3; p = .004), supporting their construct validity. Parents' FLACC and Numbers ratings correlated well with nurse ratings (intraclass correlation coefficient = 0.78 [confidence interval = 0.63-0.87] and intraclass correlation coefficient = 0.73 [confidence interval = 0.59-0.83], respectively). The parents' coded Numbers ratings correlated moderately with their child's ratings (rho = 0.57; p = .05) and agreed in 20% to 100% of cases (kappa = 0.388). There was better overall agreement between parents' FLACC scores and child ratings (33%-67% agreement; kappa = 0.43). The parent underestimated the child's pain with FLACC ratings in only one case (8%), but overestimated pain in three cases (25%). This study suggests that parents of children with CI provide reasonable estimates of their child's pain, particularly when using a structured pain tool. Parents may, however, tend to overestimate their child's pain during the early postoperative period.     

Parents' support and satisfaction with their child's postoperative care

It is recognized that parents' presence during their child's hospitalization is of benefit to the parents and the child. However, the level of parental involvement in their child's care may be influenced by many factors, such as the amount of support nurses provide for parents. This article reports on two themes from the findings of a larger study on parental involvement in children's postoperative pain management - parental support and parents' satisfaction with their child's postoperative pain management. The aim of the larger study was to explore both nurses' and parents' perceptions of parental involvement in their child's postoperative pain management. The methods used were both qualitative and quantitative. The qualitative method of phenomenology was used to guide 20 nurse and 20 parent interviews. Quantitative methods involved surveying the nurses and parents on their perceptions of how supportive the nurses were towards the parents. The charts of 20 children were reviewed for pain-related data. This article reports on the issues of parent support from the results of the survey, and on satisfaction relating to their child's postoperative pain management from the parent interviews. The findings demonstrated that nurses perceived that parents were receiving more support from them than that which parents felt they were receiving. Parents were more satisfied with their child's pain management and children received more analgesia when they were cared for by a lower grade nurse.     

Impact of asthma education received from health care providers on parental illness representation in childhood asthma

The burden of asthma has increased dramatically despite increased understanding of asthma and new medication regimens. Data reported here are part of a larger study investigating factors that influence parental asthma illness representation and the impact of this representation on treatment outcomes, including the parent/health care provider relationship. We investigated the influence of asthma related education provided by health care providers on these outcomes. After interviewing 228 parents of children with asthma, we found that asthma education received from the child's health care providers positively influenced parental belief systems, especially attitudes towards anti-inflammatory medications and facts about asthma. Parents who reported receiving more education also reported stronger partnerships with their child's health care provider.     

State Versus Trait: Validating State Assessment of Child and Parental Catastrophic Thinking About Children's Acute Pain

Pain catastrophizing has emerged as one of the most robust predictors of child pain outcomes. Although assessments of state (ie, situation-specific) pain catastrophizing in children and parents are often used, their psychometric properties are unknown. This study aimed to assess factor structure, reliability, and predictive validity of state versions of Pain Catastrophizing Scales for children and parents relative to corresponding trait versions for child and parental pain-related outcomes. Data were pooled from 8 experimental pain studies in which child and/or parent state catastrophizing (measured immediately before application of a pain stimulus) and trait catastrophizing were assessed in community-based samples of children aged 8 to 18 years (N = 689) and their parents (N = 888) in Dutch or English. Exploratory factor analyses were conducted to examine the underlying factor structure of the state versions of the Pain Catastrophizing Scale for parents/children, revealing a single factor solution that explained 55.53% of the variance for children and 49.72% for parents. Hierarchical linear regression analyses were used to examine relative influence of state versus trait catastrophizing on child and parent pain-related outcomes. Child and parent state catastrophizing were significantly associated with child pain intensity, child state anxiety and parental distress. State catastrophizing scores showed stronger associations than trait scores for most outcomes.

Pain,Fatigue, Family Functioning,and Attitude Toward Illness in Children with Juvenile Rheumatic Diseases

Pain and fatigue adversely affect the physical and psychosocial functioning of children with Juvenile Rheumatic Diseases (JRDs). Research investigating relations among disease severity and family functioning has produced mixed results. There is scant research examining the relations among illness attitudes and disease severity. Children (50 girls and 32 boys) with a JRD and their parents participated in this study. Parents completed a scale assessing family functioning and children completed information about their experience of pain and fatigue and attitude toward their illness. Regression analyses indicated that children experiencing more pain and fatigue were apt to hold negative attitudes toward their illness, and that parents reported lower family functioning when children were experiencing higher levels of fatigue. Research examining relations among child and reports of family functioning and children’s attitudes toward their illness will provide information for health care teams serving these children and their families.     

A Randomized Controlled Trial of the Effectiveness of Educating Parents about Distraction to Decrease Postoperative Pain in Children at Home after Tonsillectomy

Today, parents are more involved with postoperative pain management, because children are discharged as early as possible after surgery. The purpose of this randomized controlled trial was to determine the effectiveness of educating parents to provide distraction in addition to pharmacologic pain management in decreasing postoperative pain at home for children ages 3 to 7 years. Ninety-three children aged 3–7 years having tonsillectomy at Landspitali, The National University Hospital of Iceland, and their parents were randomized to one of two intervention groups. The interventions were pharmacologic pain management education (control group) and pharmacologic pain management education with distraction (experimental group). Pain was measured by parent’s report of pain behavior during the evening on postoperative days 1 and 2 and child's report of pain intensity on eight time points on postoperative days 1 and 2. Sixty-nine children had complete data. The results from RM-ANCOVA showed that when adjusting for pain intensity in the morning on postoperative day 1 that educating parents about distraction in addition to educating them about pain medication management decreases mean pain behavior scores (p < .001). There was no difference in pain intensity between the groups using RM-ANCOVA. However, there was association between pain intensity in the morning on postoperative day 1 and follow-up pain intensity (p < .001). The results from this study support the importance of educating parents of children having tonsillectomy about distraction in addition to educating them about pain medication management.     

Painful pricks and prickle pains: is there a relation between children's ratings of venipuncture pain and parental assessments of usual reaction to other pains?

OBJECTIVE: The objective of this study was to examine whether parental assessment of a child's usual behavioral reaction to common painful events predicts the child's ratings of needle pain intensity from routine venipuncture. DESIGN: Children aged 3 to 12 years (n = 88) used the Faces Pain Scale to rate how much venipuncture hurt and also indicated whether the pain was more, less, or the same as expected. The child's parent (mother) used the same scale to predict how much the needle would hurt the child as well as to rate the child's pain as observed at the time of venipuncture. Parents also estimated their child's usual reaction to six common painful events. An independent observer used a behavioral checklist to rate the child's pain response at the time of venipuncture as well as to assign a global pain rating on the Faces Pain Scale. OUTCOME MEASURES: The Faces Pain Scale and a behavioral checklist (scoring facial, vocal, motor, and verbal reactions) were used in this study. RESULTS AND CONCLUSIONS: Those children who reported venipuncture as hurting more than expected also gave the highest mean needle pain ratings and tended to have their pain underpredicted by their parents before venipuncture. For these children, parental estimates of reactions to other painful events proved to be a useful predictor of self-reported needle pain. Parent and child ratings of pain agreed more closely for those parents who indicated having relied on what their child "did" rather than "said." Additionally, and consistent with previous studies, independent observation of children's facial responses was the most useful indicator of needle pain severity. Preparation of children for venipuncture may be enhanced by asking a parent beforehand how the child usually responds to everyday pain. Specifically, reaction to other sharp time-limited pains (e.g., finger pinch, stepping on a prickle) may provide a useful guide to identifying which children will report experiencing greater pain than expected from venipuncture.     

Comparison of ventilator-dependent child reports of health-related quality of life with parent reports and normative populations

AIMS: This paper is a report of the first study of ventilator-dependent child and parent ratings of health-related quality of life using a validated instrument, which was undertaken as part of a case study of costs and consequences. BACKGROUND: Advances in medical care and technologies such as the ventilator have extended childhood illness trajectories beyond our current range of knowledge and experience. These advances and their effects reinforce the need for further research to determine health-related quality of life as an outcome of ventilator-dependency in childhood. METHODS: The KINDL was administered to ventilator-dependent children aged 4-18 years and parents as part of an in-depth case study. Twenty-seven parents and 17 children (including 17 child-parent pairs) completed questionnaires. Data were collected between 2001 and 2004. Findings were compared with normative values derived from a representative sample of children of a similar age in the general population. RESULTS: Ventilator-dependent children reported significantly lower overall health-related quality of life, and significantly lower scores on all domains except about their friends, compared with school children, and chronically ill children in respect of their disease. Parents and children rated children's overall health-related quality of life the same but parents reported significantly lower scores for their child's disease and relationships with friends. There was a positive correlation between children and parents in all areas apart from self-esteem and school. CONCLUSIONS: Both child and parent perspectives are needed to understand the impact of ventilator-dependency and associated co-morbidity on the child. As new interventions and models of service delivery emerge it will be important for nurses to understand the impact on the child by evaluating physical, emotional and social consequences.     

Parent Pain Responses as Predictors of Daily Activities and Mood in Children with Juvenile Idiopathic Arthritis: The Utility of Electronic Diaries

The present study used electronic diaries to examine how parent responses to their child's pain predict daily adjustment of children with juvenile idiopathic arthritis (JIA). Nine school-aged children with JIA along with one of their parents completed thrice-daily assessments of pain-related variables, activity participation, and mood using handheld computers (Palm® pilots) for 14 days, yielding a potential of 42 child and parent assessments for each dyad. Children provided information on current pain level, mood, and participation in social, physical, and school activities. Parents independently rated their own mood as well as their behavioral responses to their child's pain at the same time points using a separate handheld computer. Results of multilevel modeling analyses demonstrated that use of “protective” pain responses by parents significantly predicted decreases in child activity and positive mood, with an even stronger inverse relationship between protective pain response and positive mood observed in children with higher than average disease severity. Protective pain responses were not found to be significantly predictive of daily negative mood in children. The use of “distracting” responses by parents significantly predicted less child activity restrictions but only in children having higher disease severity. There also was an unexpected trend in which parent use of more distracting pain responses tended to be associated with lower child positive mood. These preliminary findings suggest the importance of the parent in influencing adjustment in children with JIA and lend support to the incorporation of parents into comprehensive pain management approaches. The potential benefits of using electronic daily diaries as a strategy to examine pain and adjustment in children with JIA pain are discussed.     

Catastrophizing about their children's pain is related to higher parent–child congruency in pain ratings: An experimental investigation

Little is known about the variables that account for why parents underestimate the pain of their child. In the present experiment, the joint impact of parental catastrophizing about their child's pain and children's facial pain expressions was examined upon pain estimates of their child undergoing a pressure pain test. In line with previous research, parents underestimated their children's pain. Interestingly, it was found that pain was estimated as higher when the child showed more facial pain expressions and when parents catastrophized more about their child's pain. An intriguing finding was that catastrophizing about their child's pain was related to less parent–child incongruence in pain ratings. The discussion addresses the possible functions of catastrophizing of parents about their children's pain, and delineates avenues for future research.     

Can we screen young children for their ability to provide accurate self-reports of pain?

No validated screening tasks exist to distinguish children who can accurately use self-report pain measures from those who cannot. Children aged 3-7 years (n = 108), each with a parent, provided data before and after day surgery. Parents rated how well they thought their child could understand the Faces Pain Scale-Revised (FPS-R), and children completed 4 screening tasks in counterbalanced order, such as rating pain in vignettes and selecting a middle-sized cup. Parents and children used the FPS-R to rate the children’s pain intensity. Children’s FPS-R ratings were scored for accuracy based on the extent to which they conformed to expected pain trajectories (eg, pain increasing following surgery, decreasing following analgesia), and based on parent-child agreement. On average, parents rated the youngest age at which children could understand the FPS-R as 4.4 years (95% confidence interval 4.1-4.5). The youngest children provided inaccurate high pain ratings before surgery, but they became indistinguishable from the oldest in the accuracy of their pain ratings for the remainder of the 3-day study period, suggesting that direct experience with pain or with the rating task may improve accuracy. Although children’s performance on the screening tasks was significantly associated with self-report accuracy, no prediction was strong enough for clinical use (all r’s < 0.30). We failed to identify a screening tool that was better than chronological age in identifying which children could accurately self-report pain using the FPS-R. Future research should explore other screening tasks, training methods, and simplified approaches to pain assessment for young children.     

Effects of Parental Presence during Children's Venipuncture

Objective: To determine whether parental presence during venipuncture (VP) altered self-reported distress of the child, the parent, or the health professional (HP) performing VP.
Methods: During nine consecutive months, 130 nonconsecutive 8–18-year-old children having VP in an urban pediatric ED were prospectively randomized into two groups of 65 patients each. Before VP, every child, parent, and HP completed a questionnaire developed to measure epidemiologic variables believed to influence distress during VP. The patients were randomized to have either a parent present or both parents absent during VP. The patients, the parents, and the HPs privately self-reported their distress during VP on a visual analog scale (VAS). Statistical significance was determined by the Mann-Whitney U (rank-sum) test.
Results: In the parent-present group, distress scores were lower for the parent (p < 0.01) and for the child (p < 0.04) than they were in the parents-absent group. The HP performing VP had no difference in distress scores with and without parental presence (p < 0.55).
Conclusions: Parents and children having VP have less distress with parental presence. Health professional distress is not affected by parental presence.     

Stress and Perception of Procedural Pain Management in Chinese Parents of Children With Cancer

ObjectivesChildren with cancer are exposed to repeated painful and invasive procedures. This study examines Chinese parents' stress and perception toward their children's procedural pain control.MethodsWe recruited 265 parents of children (aged <18 years) diagnosed with hematological cancer (74.7%) and solid tumors (25.3%) from two major public hospitals. Parents used a scale (0–10) to rate perceived pain experienced by their child when undergoing lumbar puncture (LP), bone marrow aspirate, or/and biopsy. They reported their stress level and attitudes toward analgesics using the adapted Pain Flexibility Scale for Parents and Parental Medication Attitude Questionnaire. General linear modeling was used to identify factors associated with perception outcomes.ResultsParents (72.8% mothers, age 36.5 [6.8] years) expressed that they were worried (31.7%) and had difficulty with concentration (57.7%) when the child was in pain. Among parents whose children had undergone LP (n = 207), 39.1% perceived that their child still experienced severe pain (pain score >7) even with existing pain control measures. Parents reported concerns over side effects of analgesics (69.4%) and addiction (35.1%). Half of the parents (47.2%) perceived that analgesics should only be reserved for severe pain. Parents who were older (estimate = 2.07, SE = 0.87; P = 0.0054) and had lower education attainment (estimate = ?3.38, SE = 1.09; P = 0.0021) had a more negative attitude toward analgesics use. Higher parental distress was associated with avoidance of analgesics use (r_s = 0.17, P = 0.0052).ConclusionOur findings suggested that subgroups of Chinese parents demonstrated distress with their child's pain and harbored misconceptions over analgesics use. Future work includes devising targeted psychoeducation interventions for these parents.     

Treatment expectations for CAM interventions in pediatric chronic pain patients and their parents

Patient expectations regarding complementary and alternative medicine (CAM) interventions have important implications for treatment adherence, attrition and clinical outcome. Little is known, however, about parent and child treatment expectations regarding CAM approaches for pediatric chronic pain problems. The present study examined ratings of the expected benefits of CAM (i.e. hypnosis, massage, acupuncture, yoga and relaxation) and conventional medicine (i.e. medications, surgery) interventions in 45 children (32 girls; mean age = 13.8 years +/- 2.5) and parents (39 mothers) presenting for treatment at a specialty clinic for chronic pediatric pain. Among children, medications and relaxation were expected to be significantly more helpful than the remaining approaches (P < 0.01). However, children expected the three lowest rated interventions, acupuncture, surgery and hypnosis, to be of equal benefit. Results among parents were similar to those found in children but there were fewer significant differences between ratings of the various interventions. Only surgery was expected by parents to be significantly less helpful than the other approaches (P < 0.01). When parent and child perceptions were compared, parents expected hypnosis, acupuncture and yoga, to be more beneficial than did children, whereas children expected surgery to be more helpful than did parents (P < 0.01). Overall, children expected the benefits of CAM to be fairly low with parents' expectations only somewhat more positive. The current findings suggest that educational efforts directed at enhancing treatment expectations regarding CAM, particularly among children with chronic pain, are warranted.     

Pain treatment thresholds in children after major surgery.

OBJECTIVE: The objectives of this study were to use a self-report pain scale to examine child pain treatment thresholds after major surgery (i.e., the level of pain they are comfortable with before requiring analgesia), as well as to examine agreement between mother-, nurse-, and child-rated pain treatment thresholds. METHODS: Twenty-five children aged 6 to 16 years were interviewed for 3 consecutive days after major surgery. Subjects used the Faces Pain Scale to rate their current pain, worst postoperative pain, and pain level at which they would like to receive analgesia (the pain treatment threshold). Parents and nurses also estimated the child pain treatment thresholds. RESULTS: For day 1, mean pain was 1.86 of a maximum of 6, mean worst pain was 4.16, and mean pain treatment threshold was 2.28. For day 2, these values were 1.90, 4.10, and 2.54, and for day 3 they were 1.62, 4.56, and 1.85, respectively. Mean scores for all 3 days were as follows: pain, 1.79; worst pain, 4.15; and pain treatment threshold, 2.33. Although mother-nurse ratings were correlated (0.471), mother-child and nurse-child ratings were not significantly correlated. Using the pain treatment threshold as the criterion, 36% of our subjects were undermedicated after the first day of surgery. CONCLUSION: Pain treatment thresholds seem to be lower in children after major as compared with minor surgery. Parents and nurses are not accurate in rating child pain treatment thresholds. Parents tended to overestimate their child's pain treatment threshold, whereas nurses were less consistent in their scoring.     

Parent perceptions of the psychological functioning of their children diagnosed with pediatric motility disorders and that of family members.

The aim of our study was to characterize the parental perceptions of the behavioral and emotional functioning of their children and families coping with gastrointestinal motility disorders. The American Pseudo-obstruction and Hirschsprung's disease Society sponsored an educational meeting for parents of children afflicted with a variety of pediatric gastrointestinal motility disorders. During the conference, parents completed a questionnaire pertaining to the behavioral and emotional functioning of the afflicted child and other family members. Parents perceived that the child's illness was more difficult on the parents than on the affected child or their siblings. Also, parents perceived support from professionals, family, and friends increased after the children were diagnosed with pediatric gastrointestinal motility disorders. Parents worried most about the health and medical management of their afflicted child. The most common behavioral problem of the afflicted children was fear of separation, whereas the most common behavioral problem of their siblings was jealousy. The majority of referrals to mental health professionals resulted from parental emotional problems or marital discord.