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.     

Poor communication and knowledge deficits: obstacles to effective management of children's postoperative pain

AIM OF THE STUDY: To explore the perceptions of nurses and parents of the management of postoperative pain in children. This paper focuses on issues of knowledge and communication. BACKGROUND: Nurses are the key health care professionals with responsibility for managing children's pain, however, nurses are not well supported educationally to manage the level of responsibility. RESULTS: Using matched interviews between 20 parents and 20 nurses many issues arose relating to the nurse/parent communication process. It was also clear that despite nurses' knowledge of pain management being deficient, they had expectations that required parents to have a level of knowledge they did not possess. CONCLUSIONS: The findings suggest that nurses' poor communication with parents and nurses' knowledge deficits in relation to children's pain management create obstacles to effective pain management. These obstacles need to be addressed in order to improve the management of children's pain through better education of nurses and two way communication with parents.     

Assessment of acute pediatric pain: do child self-report, parent ratings, and nurse ratings measure the same phenomenon?

The purpose of this study was to determine the factors that are associated with child, parent, and nurse ratings of acute pediatric pain and distress during venipuncture. The behavior of eighty-five pediatric cancer patients during venipuncture was recorded by trained raters, and their observations were compared with ratings of pain and distress obtained from parents, pediatric patients, and pediatric nurses. Regression analyses indicated that ratings made by the child, parent, and nurse reflect different perspectives. Nurses' ratings were based upon overt distress, parents' ratings reflected their subjective perception of the child's pain, and the child's self-report was associated with the child's chronologic age.     

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.     

Concepts of pain in preschoolers and children of early school age and their parents after painful interventions during hospitalization

Subject of the present study are individual pain concepts of preschoolers and children of early school age. Their parents' concepts of pain were considered as well. In a qualitative study interviews were performed with 9 children and their parents in a children's hospital to investigate their individual concepts of pain, their methods of pain assessment, and self-initiated strategies of pain alleviation. Already 4-6 year old children are able to remember painful experiences and to communicate about pain. Strategies of pain alleviation used by children are distraction methods as well as methods of physical relief. The child's parents play an important role concerning pain assessment and coping. The parents' presence is also very important to communicate the child's needs to nurses. Parents want nurses to consider physiological as well as behavioral aspects in the assessment of the child's pain. Besides, they expect nurses to have competences concerning prevention, assessment and alleviation of pain. To perform a trustful relationship to children and parents, more intensified counselling by nurses seems necessary.     

The experience of stress in parents of children hospitalized with long-term disabilities

This paper discusses parents' perceptions of their stress when their children are hospitalized with long-term disabilities. The study used a qualitative method. Data were collected with 40 parents through in-hospital interviews, and were analysed using the method of constant, comparative analysis. Parents' own interpretation of their stress experience is considered in relation to their perception of their role. The data suggest that the hospitalization of a child requires parents to make changes in their usual parenting role. In describing the nature of the changes required, parents identified the need to understand the illness experience; become familiar with the hospital environment; adapt to their changing relationship with the child and other family members; and negotiate with health professionals about their child's care. Verbatim accounts are used in this paper to illustrate parents' interpretations of their hospital experience. Parents perceive their role in their hospitalized child's care differently than health professionals do, and it would appear that much parental stress is attributable to the 'space' between health care workers' understanding of parents' experience, and parents' own comprehension. If nurses understood parents' own perception of their hospital-related stress better, more effective nursing care could be developed. Further research is needed in this important area.     

A study of the effectiveness of a pain management education booklet for parents of children having cardiac surgery.

Parents need education about pain so they can support their hospitalized child and manage their child's pain at home. The purpose of this study was to examine the effectiveness of a pain booklet on parental pain support to children experiencing postoperative pain. A randomized, repeated measures, experimental design using a pain education booklet and a standard care comparison group was used to study parents of 51 children (3 to 16 years of age) having cardiac surgery. Measurement techniques used to assess differences in parental pain management included: attitudes about pain medication, child and parent pain ratings (Oucher), opioids used, recovery, satisfaction, and comfort in communication. Results indicate that children do report moderate levels of pain postoperatively. Parents who were exposed to the pain assessment and management for parents education booklet preoperatively significantly increased their knowledge and attitudes toward pain medication scores from pre- to post-test, whereas those in the control group remained stable. Post-test scores were not significantly different between groups. Child and parent pain ratings were significantly and positively correlated. Practice implications include the use of an educational booklet about pain with parents before surgery to increase their knowledge about and attitudes toward pain management. Additionally, a parent may provide an alternative pain report when a child is unable to or unwilling to self-report their pain.     

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 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.     

A Pilot Randomized Controlled Trial of Outcomes Associated with Parent-Nurse Controlled Analgesia vs. Continuous Opioid Infusion in the Neonatal Intensive Care Unit

PurposeProspectively compare parent/nurse controlled analgesia (PNCA) to continuous opioid infusion (COI) in the post-operative neonatal intensive care unit (NICU) population.Design/MethodsA randomized controlled trial compared neonates treated with morphine PNCA to those treated with morphine COI. The primary outcome was average opioid consumption up to 3 post-operative days. Secondary outcomes included 1) pain intensity, 2) adverse events that may be directly related to opioid consumption, and 3) parent and nurse satisfaction.ResultsThe sample consisted of 25 post-operative neonates and young infants randomized to either morphine PNCA (n = 16) or COI (n = 9). Groups differed significantly on daily opioid consumption, with the PNCA group receiving significantly less opioid (P = .02). Groups did not differ on average pain score or frequency of adverse events (P values > .05). Parents in both groups were satisfied with their infant's pain management and parents in the PNCA group were slightly more satisfied with their level of involvement (P = .03). Groups did not differ in nursing satisfaction.ConclusionsPNCA may be an effective alternative to COI for pain management in the NICU population. This method may also substantially reduce opioid consumption, provide more individualized care, and improve parent satisfaction with their level of participation.Clinical ImplicationsPatients in the NICU represent one of our most vulnerable patient populations. As nurses strive to provide safe and effective pain management, results of this study suggest PNCA may allow nurses to maintain their patients' comfort while providing less opioid and potentially improving parental perception of involvement.Study TypeTreatment study.Level of EvidenceI.     

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.     

Parent and teacher perceptions of the impact of school nurse interventions on children's self-management of diabetes

Diabetes is a common chronic illness among school-age children. The school nurse collaborates with the student, parents, and teachers to help the child manage their diabetes effectively. Very little is known about the relationship between school nurse interventions and parent/teacher perceptions of the child's self-management. We examined this relationship in a sample of 69 school-age children who received case management from school nurses. Our findings suggest that teachers and parents do not always agree on how well a child manages their illness. When school nurses provide more education and counseling, parents are more likely to perceive an improvement in their child's self-management. Teachers are more likely to perceive an improvement when the nurse provides more classroom visits and includes the physical education teacher and guidance counselor. These findings suggest that the roles of educator, counselor, and collaborator are important for school nurses who provide care to school-age children with diabetes.     

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.     

Parent decision making for life support for extremely premature infants: from the prenatal through end-of-life period

Most deaths of extremely premature infants occur in the perinatal period. Yet, little is known about how parents make life support decisions in such a short period of time. In the paper, how parents make life support decisions for extremely premature infants from the prenatal period through death from the perspectives of parents, nurses, and physicians is described. Five cases, comprised of five mothers, four neonatologists, three nurses, and one neonatal nurse practitioner, are drawn from a larger collective case study. Prenatal, postnatal and end-of-life interviews were conducted, and medical record data were obtained. In an analysis by two research team members, mothers were found to exhibit these characteristics: desire for and actual involvement in life support decisions, weighing pain, suffering and hope in decision making, and wanting everything done for their infants. All mothers received decision making help and support from partners and family, but relationships with providers were also important. Finally, external resources impacted parental decision making in several of the cases. By understanding what factors contribute to parents' decision making, providers may be better equipped to prepare and assist parents when making life support decisions for their extremely premature infants.     

护士在儿童术后疼痛评估中面临的问题

目的:探讨护士在儿童术后疼痛评估中的行为、经验和看法。方法:应用质性研究方法,对20名儿童医院护士进行深入访谈。结果:护士在儿童术后疼痛评估中的角色定位和期望以及临床执行术后疼痛评估时的能力和行为,受到以下因素的影响:护士、医生、患儿、家长四者之间的关系,特殊的临床情境,疼痛管理政策以及护理教育等。缺乏科学系统的理论支持和具体有效的疼痛评估指导,是临床护士无法创造性发挥其专业优势,减轻术后儿童疼痛的主要原因。结论:目前我国需要从护士自身的观点和需求出发,对疼痛评估和管理的护理教程、管理政策的正确与否,以及其与临床的相关性进行重新评估和改进。     

Effectiveness of a tool to improve role negotiation and communication between parents and nurses

Family-centred care philosophies are promoted by policy makers and nurse leaders, although how this ideal is put in practice often remains unclear. Checklists or guidelines may be useful tools to assist nurses in determining a parent's desire for involvement in their child's care. AIM: To evaluate the effectiveness of a documentary tool designed to formalise role negotiation and improve communication between parents and nurses. METHODS: A quasi-experimental pre/post-intervention study design was used to determine nurses' perceptions of the effectiveness of a documentary tool in facilitating nurse-parent discussion about parental desire for involvement in the daily care activities of their child while in hospital. Nurses in randomly selected wards were assigned to usual practice (control group) or the implementation of a Negotiated Care Tool (intervention group) during a three-month period. RESULTS: Pre- and post-intervention surveys were completed by 69 nurses. The tool was associated with attitudinal changes in the desired direction for 12 of the 24 nurse responses: nurses in the intervention group were significantly more likely to include parents in decision making (p = 0.007); encourage parents to ask questions during their child's hospital stay (p = 0.005); and invite extended family members to participate in care with parental permission (p = 0.03). CONCLUSION: The Negotiated Care Tool raised staff awareness of the importance of effective communication and negotiation of care with parents in busy clinical practice areas. Transparent communication and negotiation of roles between nurses and parents are integral to family-centred care provision.     

Parents' perceptions of care-giving to a child with attention deficit hyperactivity disorder: an exploratory study

Attention deficit hyperactivity disorder (ADHD) is the most common neurobehavioral childhood disorder in which parental care-giving is found very stressful. Limited qualitative research is found on their care-giving experiences. This study aimed to explore Chinese parents' experiences of care-giving to a child with ADHD at home. It was conducted at one Child and Adolescent Mental Health Unit in Hong Kong using qualitative exploratory approach. A purposive sample of 12 parents was recruited. Semi-structured interviews were conducted, each lasting about one hour. Content analysis was used to analyze the data. From the interview data, four themes were identified, including: concept of the illness, barriers to child care in ADHD, psychological effects in care-giving, and positive aspects of care-giving. The parents indicated a variety of life problems and health concerns in care-giving. The findings may help nurses understand the perceptions and barriers towards parental care of a child with ADHD in a Chinese population and consider parents' educational needs in care-giving.