Parental views on participation in their child's pain relief measures and recommendations to health care providers

The purpose of this study was to describe parental views on the factors influencing participation in their 8- to 12-year-old hospitalized child's surgical pain relief measures, and the recommendations to health care providers concerning alleviation of their child's pain. The data were collected by a questionnaire completed by parents (N = 192) whose child was hospitalized in one of the pediatric surgical wards in the five university hospitals of Finland. Results revealed that most of the parents (98%) agreed to having adequate opportunities to participate in their child's care according to their personal preferences; however, only 23% of the parents totally agreed that they had a clearly defined role in their child's pain relief measures. Feelings such as concern, fear, helplessness, anxiety, and depression were commonly experienced by the parents during their child's hospitalization. Most of the parents' recommendations concerned the topic of providing information. The findings of this study have implications for nursing practice.     

The most important needs of parents of critically ill children: parents' perceptions.

Research studies have identified the needs of relatives when they have had an adult family member in the intensive care unit. However little similar work has been done within the paediatric setting. Therefore the aim of this study was to examine what parents considered to be their most important needs, when they have a child ill in the intensive care environment (PICU). A questionnaire was designed, and was distributed to parents of 30 children admitted into a PICU. The questionnaire identified needs items which may be important to parents of sick children. The parents were required to indicate how important each need was to them during the time of the child's stay in the PICU. Results obtained indicate that parents have a strong need for information and relief of anxieties that they may have about their child's condition. A conclusion reached in this study is that if the critical care staff can go some way to assess and meet the needs of parents of critically ill children, then these parents may be more able to become effective partners in care, which may have therapeutic effects upon the child's health recovery.     

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.     

Children's participation in the decision-making process during hospitalization: an observational study

Twenty-four children (aged 5 months to 18 years) who were admitted to a university hospital were observed for a total of 135 hours with the aim of describing their degree of participation in decisions concerning their own care. Grading of their participation was made by using a 5-point scale. An assessment was also made of what was considered as optimal participation in each situation. The results indicate that children are not always allowed to participate in decision making to the extent that is considered optimal. In no case was it judged that a child participated in or was forced to make a decision that was too difficult for the child. The interactions between children, parents and staff were also described in connection with discussions and decision-making processes. This showed that parents do not always support their children in difficult situations and that health care staff often inform children about what is going to happen without presenting alternatives or asking for their views. Staff may, however, find themselves facing an ethical conflict in deciding between supporting a child's view or following hospital routine. It is of great importance that children are looked upon as potentially autonomous individuals and that staff members realize that one of their core duties is to facilitate children's participation in decision making concerning their health care.     

Parents' roles in using non-pharmacological methods in their child's postoperative pain alleviation

Increasingly nowadays, parents participate more fully in the care of their hospitalized children. The purpose of this study was to describe parents' utilization of selected non-pharmacological methods in relieving their hospitalized child's (aged 8-12 years) postoperative pain, and factors related to this function. Data were collected by a questionnaire survey completed by parents (n=192) with a child hospitalized on a paediatric surgical ward in the five university hospitals of Finland. The response rate was 90%. Results indicated that non-pharmacological methods, such as emotional support and helping with daily activities, were well utilized whereas cognitive-behavioural and physical methods were less frequently used strategies. Certain background factors specific to the parents and their hospitalized children were significantly related to the non-pharmacological methods used by the parents. The hospitalized child's gender, the time of the surgical procedure, and the parents' assessments of their child's pain intensity, were especially significantly related to many of these strategies. The findings of this study could be used in clinical practice to improve guidance provided to parents regarding interventions for children's pain relief.     

Chinese parent's use of nonpharmacological methods in children's postoperative pain relief

Parental participation in paediatric postoperative care is common in China. However, the knowledge is limited on what methods parents use to relieve their children's postoperative pain in hospital. The purpose of this study was to describe what nonpharmacological methods parents use to relieve their children's postoperative pain and factors related to this. A previously validated Scandinavian questionnaire survey was conducted in five provincial hospitals in Fujian, China, in 2004. Parents (n = 206) whose children had undergone operation were asked to complete questionnaires concerning nonpharmacological methods for children's pain relief. The response rate was 88%. Results show that the most commonly used methods by parents were emotional support strategies, helping with daily activities, distraction and imagery. Breathing technique was the method used least frequently. Fathers and parents who were older, more educated, employed and with earlier hospitalization experience with their children used pain alleviation methods more frequently than mothers and parents without these characteristics. Moreover, parents used some methods more frequently with boys, younger children, as well as children admitted for selective operations, with longer duration of hospitalization and with moderate or severe pain. Parents utilized various nonpharmacological methods for children's pain relief, especially those easy to use. This study may serve to focus healthcare providers' efforts on educating parents with respect to various nonpharmacological pain alleviation methods available for postoperative pain. Furthermore, this study provides parents an opportunity to be aware of their role in their children's pain management.     

Promoting health for families of children with chronic conditions

AIM: This paper reports a study whose aim was to describe how nurses in a paediatric unit promote the health of families of children with chronic conditions during the children's hospitalization. BACKGROUND: It is stressful for a family when a child has a chronic condition and hospitalized. Nurses have the opportunity to promote family health while a child is hospitalized, and previous studies contain a wealth of recommendations on how this should be done. However, there is little research evidence about family care and how nurses promote the health of a family with a chronically ill child. METHODS: Forty nurses who worked in two paediatric units providing care for children with chronic conditions and their families participated in the study. Data were collected in two Finnish hospitals in 2002 using group interviews, and nursing actions were observed in both units for a period of 84 hours. Data analysis was based on the grounded theory method, proceeding to the stage of axial coding. Data were collected until theoretical saturation was reached. FINDINGS: Family care was based on three distinctive strategies. Nurses used a systematic, selective or situation-specific strategy while promoting family health during a child's hospitalization. CONCLUSIONS: The findings indicate that nurses used different strategies while promoting family health during a child's hospitalization. The systematic way of working with families identified in the study seems a useful strategy. All three strategies of family nursing described here should be tested in other paediatric wards and in other geographical locations.     

Parent's involvement in decisions when their child is admitted to hospital with suspected shunt malfunction: study protocol

Title.  Parent's involvement in decisions when their child is admitted to hospital with suspected shunt malfunction: study protocol.
Aim.  This paper outlines the protocol for a study aimed at exploring parent's involvement during professional–parent interactions and decisions about their child's care in the context of suspected shunt malfunction.
Background.  Hydrocephalus is a long-term condition treated primarily by the insertion of a shunt that diverts fluid from the brain to another body compartment. Shunts frequently malfunction, and parents of children with shunted hydrocephalus are responsible for recognizing and responding to shunt complications. Parents feel that interactions with professionals when they seek healthcare advice for their child do always not encourage active participation in care decisions.
Methods.  The study design is based on qualitative methodologies: a combination of conversation analysis applied to consultation recordings of professional–parent interactions when a child is admitted to hospital with suspected shunt malfunction, and semi-structured follow-up interviews with the same participants within 2 weeks of the consultation.
Participants.  This is a prospective study and participants will be purposefully selected. Parents of children who have been admitted to hospital with suspected shunt malfunction and healthcare professionals responsible for the initial assessment of the child will be invited to participate.
Discussion.  The study will identify how decisions about a child's care are negotiated between parents and healthcare professionals at key stages of the care pathway. In addition, examining interactions between healthcare professionals and parents may identify approaches that support or hinder parents in contributing to the decision-making processes when they seek advice from healthcare professionals.     

Parents' experience of coming to know the care of a chronically ill child

The family is the primary source of care for a chronically ill child, and it is the parents who must manage the child's illness on a daily basis. This qualitative study was undertaken to investigate the ways in which 10 two-parent families of children with juvenile arthritis experience their child's illness. In this paper the theme of coming to terms with the management of the illness and what it entails for the parents is examined. The data provide evidence of how the parents learn, and their efforts and experience of learning to care for the child on a daily basis. This is a complex process and includes the different phases the parents experience as they move through the learning process. The findings suggest that the parents learn the child's care and make adjustments to the demands of managing the child's illness in a way that works best for them.     

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.     

Parents' experiences of participation in the care of hospitalised children: a qualitative study

BACKGROUND: The introduction of unrestricted visiting hours has led to the encouragement of parents to stay with and participate in the care of their hospitalised child. In order to stay with the hospitalised child, parents have to be away from home or work, which in turn impacts on their personal and family life. However, no published study on parents' experiences of childcare participation during paediatric hospitalisation has been found for a Chinese population. OBJECTIVES: This study explored Chinese parents' experiences of their participation in taking care of their hospitalised child. DESIGN: A qualitative exploratory design was adopted to capture parents' experiences of participation. SETTINGS: The study was conducted in four paediatric wards of a regional acute general hospital in the New Territories, a major geographical region of Hong Kong. PARTICIPANTS: Nineteen parents (16 mothers and three fathers) who had a child hospitalised for more than 48 h and identified themselves as staying comparatively longer with the child than their counterpart were recruited. METHODS: Data were collection by tape-recorded semi-structured interview. RESULTS: Four major categories that illustrated parents' experiences of participation in childcare were identified: reasons for staying with the child, rescheduling of family's routine, expectations of nurses, and comments on facility provisions. The findings highlight parents' desire for participation in caring for their hospitalised child, their unexpressed needs for communication and concern about the non-monetary costs of participation. CONCLUSIONS: Most parents viewed accompanying their hospitalised child as an unconditional aspect of being a parent and had a strong desire for participation. Parents' need for communication and emotional support during their participation of childcare in paediatric unit are universal. As Chinese parents are passive in seeking help, nurses should take the initiative in assessing their needs and offering them support accordingly.     

Home care of a child dying of a malignancy and parental awareness of a child's impending death

In this population-based study, we found that parents who are aware that their child will die from a malignancy are more likely to care for their child at home during the child's last month of life compared to parents who are not aware. End-of-life home care was comparable to hospital care for satisfactory pain relief, access to pain relief and access to medications for other physical symptoms. Using an anonymous postal questionnaire, we obtained information from 449 parents in Sweden who had lost a child due to a malignancy between 1992 and 1997, 4 to 9 years before participating in our study. The prevalence of dying at home and being cared for at home during the last month of life was 23.7% when parents realized intellectually more than 1 month in advance that the child would die (versus 12% who did not), 28.7% for parents who sensed that the child was aware of his or her imminent death (versus 7.8% who did not sense this) and 21.9% for those who received information that the child's illness was incurable (versus 9.4% who did not receive the information). Prevalence of children's unrelieved pain was 11.6% for those receiving home care and 15.3% for those receiving care outside the home.     

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.     

Challenging the philosophy of partnership with parents: a grounded theory study

BACKGROUND: Parent participation is viewed as a pivotal concept to the provision of high quality nursing care for children and their families. Since the 1990's, the term 'partnership with parents' has increasingly been reported in the literature and adopted as a philosophy of care in most paediatric units in the United Kingdom. OBJECTIVES: To explore children's, parents', and nurses' views on participation in care in the healthcare setting. DESIGN: Using grounded theory, data were collected through in-depth interviews, and participant observation. Sample consisted of eleven children, ten parents and twelve nurses from four paediatric wards in two hospitals in England. RESULTS: Most nurses assumed that parents would participate in care and viewed their role as facilitators rather than 'doers'. Nurses reported that the ideology of partnership with parents did not accurately reflect or describe their relationships with parents. Parents could never be partners in care as control of the boundaries of care rested with the nurses. Parents felt compelled to be there and to be responsible for their children's welfare in hospital. CONCLUSIONS: The pendulum of parent participation has swung from excluding parents in the past to making parents feel total responsibility for their child in hospital. It is argued that the current models or theories on parent participation/partnership are inappropriate or inadequate because they do not address important elements of children's, parents' and nurses' experiences in hospital.     

Care of sick children by parents: a meaningful role

Parental involvement in their child's care in hospital has undergone great change over the last century. Studies have shown how 'maternal deprivation' and 'separation anxiety' expressed by children are detrimental to a child's recovery in hospital. Striving efforts have been made to develop family-centred care, promote normality of the family unit and continue with the normal routine of the child's life within the limitations of a hospital environment and the child's illness. Expectations of the parental role in hospital need to be identified and expressed from both the parents and staff to establish an understanding that will ultimately be best for the child. Many studies have highlighted benefits to both parent and child from parental participation in hospital. However, disadvantages have been identified from resident parents who feel captive to their new situation and role. Efforts for family-centred care are highly advocated now. Care-by-Parent units have been set up in some areas to promote this idea and, although many advantages have been identified, they are not without their problems. The success of parental involvement is dependent on both parents' and staff's attitudes, enthusiasm and willingness to work together.     

An observational study of the level at which parents participate in decisions during their child's hospitalization

When a child is hospitalized, the parents find themselves in an unfamiliar environment and their parental role changes. They are in a stressful and often anxiety-filled situation and it may be difficult for them to participate in decisions. The purpose of this study was to examine the extent to which parents participate in decisions during the course of events when their child is hospitalized. Thirty-five parents of 24 children (aged 5 months to 18 years) were followed by mobile observation during their child's hospitalization in a paediatric department in Sweden. Three researchers analysed field notes in three steps, using manifest and latent coding. In step 1, 119 situations that included a decision process were identified. In step 2, the situations were assessed according to a five-level scale concerning how the parents' wishes, desires or values had been respected. In step 3, each situation was scrutinized with respect to factors influencing the extent of the parents' participation. The results showed that parents have varying ability to be involved in decision making. Professionals need to communicate more openly with them in order to identify and satisfy their needs because some parents are unwilling or incapable of expressing them.     

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.