A review of the literature from developed and developing countries relating to the effects of hospitalization on children and parents

There is a literature base about the care of children in hospital in developed nations, but little from, or about, developing countries. The aim of this review was to critically examine publications relating to the effect of hospitalization on children and their parents. 'Parents', in this context, were considered as the child's natural or adoptive parents, step-parents or any other context of parent-child relationship, in other words, the primary care-giver to the child. Most of the work reviewed from developed countries was sourced from the nursing literature, while in developing countries, the available literature was largely from medicine. Conclusions from developed countries indicated that parents should be allowed to stay in hospital with their child, and that care must be developmental-stage appropriate. Furthermore, staff need to be educated about special needs of children, children should be prepared for hospital admission (if possible) and parents' needs met. In developing countries, the meagre literature available suggested that recognition of the important role parents play in a child's hospitalization is starting to become recognized.     

An examination of the needs of parents of hospitalized children: comparing parents' and staff's perceptions

The needs of parents of hospitalized children have received some attention in the health literature, but few studies have compared parents' perceptions of needs with staff's ideas about parents' needs. The aim of this study was to examine differences between the perceptions of the needs of parents of hospitalized children held by staff - nurses, doctors and allied health staff, and parents in a 150-bed paediatric hospital in Sweden. The convenience sample comprised 132 staff - nurses, doctors and allied health staff and 115 parents of children admitted to all the wards except intensive care. Kristjánsdóttir's "needs of parents of hospitalized children" questionnaire (NPQ) was the instrument of choice and was modified slightly for use with staff. Results indicated significant differences in perceptions of the importance of different needs of parents, of how well they were being met in the hospital and how much help the parents needed to have them filled. Differences between parents' and staff's perceptions of the importance of parental needs were found in areas relating to psychosocial needs, but in general, in that hospital, the needs were being adequately met. The main differences between staff's and parents' results were in the degree of independence shown by parents in requiring help to have their needs met. This demonstrates either that parents are much more independent than appraised by staff, or, that parents are sometimes unaware of the level of assistance available.     

Parental Perceptions in Pediatric Cardiac Fast-Track Surgery

This project investigated parents' and caregivers' perceptions of the fast-track surgery process with regard to their child's surgical procedure and hospital stay. The goal of this project was to review and improve the fast-track process.Participants were parents/caregivers of pediatric patients (ie, younger than 18 years) who had undergone a low-complexity cardiac surgical procedure on a fast-track basis at Great Ormond Street Hospital for Children, London, United Kingdom, between January 2006 and January 2008.Findings suggest that parents/caregivers overestimate the time it takes for several key milestones in the fast-track process to occur and that there is a need for preoperative and preadmission education that will allow parents/caregivers to be more involved in their child's care. AORN J 89 (April 2009) 725-731. © AORN, Inc, 2009.     

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.     

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.     

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.     

Children with a long-term illness: parents' experiences of care

A diagnosis of a long-term illness in a child will bring on a major upheaval in the lives of the whole family involved and leads to a long-standing relationship with health care personnel. The purpose of this study was to describe parents' experiences with their child's illness and treatment and with their relationships with health professionals during the process of learning to care for their child. Data were collected by conducting open-ended interviews with parents (N = 11) whose child had been diagnosed with a physical long-term illness at least 1 year previously and were analyzed using qualitative content analysis. Parents' needs for information and support varied and consisted of different components in different phases of the process. During the diagnostic phase, parents were recipients of information; it was important for them to receive consistent empathetically provided information. In the next phase, parents, having gained experience of day-to-day home care, engaged in a change toward a two-way flow of information with the professionals; mutual trust was essential for the exchange of information needed for a child's proper care. Without a permanent relationship with health professionals, parents showed lack of trust in professionals' knowledge of their child's condition and care. Professionals' lack of trust in parents' expertise in their child's care was also problematic. Health professionals should lay the groundwork for a partnership in which both parties acknowledge each other's competencies; parents' needs ought to be continuously reassessed. A permanent relationship between families and health care personnel is required to achieve this.     

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.     

Future life expectations and self-esteem of the adolescent survivor of childhood cancer.

The number of adolescent cancer survivors has increased dramatically over the past decade as the result of improved treatment and diagnostic techniques. This population brings with them unique characteristics and concerns. The present study consisted of interviews with 10 adolescent survivors of childhood cancer and their parents. It investigated the adolescent's present self-esteem, the future life expectations held by both the teenagers and parents, and the relationship between the variables. Results indicated that the adolescents felt moderately competent in their lives (measures of self-esteem) and the parents felt more certain than their children that the teenagers would accomplish the tasks deemed appropriate for entry into a healthy adulthood. Pearson correlations showed a strong relationship between parents' future life expectations and adolescents' self-esteem (r = .82; P = .002), but not between parents' and adolescents' future life expectations or between the adolescents' future life expectations and self-esteem. The results are significant in addressing the impact parents can have on their child's self-esteem.     

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.     

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.     

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.     

Needs assessment in a spina bifida program: a comparison of the perceptions by adolescents with spina bifida and their parents

The primary purpose of this study was to describe and compare medical, psychosocial, and economic needs of adolescents and young adults with a neural tube defect and their parents. A secondary aim of the study was to establish the psychometric properties of a previously published needs assessment tool. Forty-nine adolescent and 59 parents receiving services from a comprehensive spina bifida program at a large children's hospital completed a needs assessment survey designed to measure perceived needs for health and social services. The Needs Assessment Questionnaire includes 8 subscales (Accessibility/Transportation/Independence, Financial Concerns, Medical Resources, Communication/Acceptance of individuals with spina bifida, Family/Socialization, Education of others regarding spina bifida, School Services, and Vocational Training). Factors related to perceived needs and differences between adolescents and parents were explored. There was a significant difference ( <.05) between parents and adolescents in 6 of the 8 subscales. On the remaining 2 subscales, differences between parents and adolescents approached significance. In all areas of needs for services, parents were less satisfied with the delivery of services and reported that needs were not being met. A significant negative correlation between age of the adolescent and perceived needs related to Transportation/Independence ( = -0.35) and School Services ( = -0.31) was found. Parents with more than a high school education perceived significantly greater needs for Vocational Training than those with less education ( = -2.1, =.04). Identification of medical, psychosocial, and economic needs of adolescents with a neural tube defect and their families has implications for quality improvement and program development.     

Quality of life reporting by parent-child dyads in Japan, as grouped by depressive status

When children are unable to assess their own health-related quality of life (HRQOL), their parents can provide useful proxy information; however, minimal agreement between the two groups on this issue has been reported in some situations. In order to clarify the degree of accordance between the self-reports of children and the proxy reports of their parents on the former's HRQOL, 679 parent-child dyads, as grouped by their depressive status, were assessed by the Pediatric Quality of Life Inventory (PedsQL). It was found that the self-reporting of the children differed significantly between those who were healthy and those who had depressive symptoms, whereas the proxy-reporting of the parents did not vary with their child's mental condition. However, the latter's reports did reveal notable dissimilarities between the healthy parents and those with depressive symptoms. The results indicated that the parents' perception of their child's HRQOL differed with their child's own perception and that the parents' perceptions were affected by their mental condition. Medical providers should assess both the child's and the parents' evaluations of the child's HRQOL, as the views of the parents could determine the use of health services and the making of decisions in clinical settings.     

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.     

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.