Hospital care of children in four countries

BACKGROUND: While perceptions of parents and staff about care of hospitalized children have been explored in developed countries, little research has examined these in developing countries. Assumptions about family-centred care are often based on Western values, with little evidence of how cultural constructs affect care delivery in developing nations. AIM: This paper reports a study to provide evidence from which culturally-appropriate hospital care for children can be delivered. METHODS: Using a rigorously devised and trialed questionnaire, attitudes of staff and parents about the way children are cared for in children's hospitals in four countries were examined and subjected to a four way analysis: parents and staff within and between developed and developing countries. RESULTS: There were no questions where all parents and staff in both developed and developing country groups were in complete agreement. However, there was some indication that, while culture plays a major role in paediatric care delivery, basic concepts of family-centred care are similar. CONCLUSIONS: The findings are limited by the sampling strategy. Nevertheless, while differences were found between parents' and staff's expectations of the delivery of care to children in hospitals, similarities existed and the influence of culture cannot be ignored. Education programmes for staff and parents should reflect these influences to ensure the optimum delivery of family-centred care, regardless of where the hospital is situated.     

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.     

Parental Participation in the Care of Hospitalized Children

The purpose of this study was to investigate those parts of the care of hospitalized children that their parents perform, the nursing tasks the parents themselves felt they could manage and whether parents' and staff members' opinions coincided. A questionnaire was given to parents of children between one week and five years of age who were hospitalized at a pediatric surgical department during a 6-week period (n = 40), a similar questionnaire being distributed to all the staff (n = 44). The results indicate that parents stay with their children during hospitalization and that they take responsibility for their children's basic care and needs. Parents and staff members believed that parents might be able to take on a greater share of caring activities if they were given instruction and support, though there was disagreement as to which nursing tasks are appropriate for parents to take on.     

Qualitative analysis of the care of children in hospital in four countries-Part 2

As part of a large study of the care of children in Australian, British, Indonesian, and Thai hospitals, qualitative methods were used to examine differences influenced by culture. Two groups were surveyed: parents of hospitalized children, and staff caring for them. Vignettes were used to invoke discussion, and content analysis was used to examine the data. Subjects were interviewed singly, or in focus groups. These interviews were audiotaped and transcribed for analysis. This article is the second of a two-part series, and includes results of the staff's interviews and discussion. The parents' results and discussion were published in Part 1 (Shields & King, 2001). Staff in all the countries considered communication with parents to be an important part of care of the hospitalized child, and this was consistent with the parents' responses. Staff were mindful of safe practices, though more so in Australia and Britain than Indonesia and Thailand. Cost of treatment for the parents was an important consideration for staff in Indonesia and Thailand when they were planning care for the child. Cultural constructions were more likely to be considered by the Australian and British staff than the Indonesian and Thai staff, and this may have been influenced by the prevailing culture of medical dominance in those countries.     

Using focus groups to explore the views of parents whose children are in hospital

Parents of children in hospital were invited to attend focus group discussions to give their views on: the experience of attending hospital with their children; information provision; facilities; and relationships with staff. The aim of the study was to inform an action plan to identify good practice and improve aspects of service delivery identified as of concern to parents. Themes identified from recorded discussions of 15 parents in four sessions were categorised as: They should be listening to parents; Stress of staying with their child; Feeling safe; Waiting; Parents as partners in care. Actions were planned to address physical aspects of care, such as provision of parent information, and staff to care for parents waiting with their child. Cultural aspects of care were addressed, as well as the invisible aspects of caring for children and their parents including attitudes and communication. The research indicates that parents appreciate the opportunity to tell their story and supports the idea of holding focus groups in the future.     

Advance directives among health care professionals at a community-based cancer center

OBJECTIVE: To determine the proportion of health care professionals at our community-based cancer center who had completed advance directives (ADs) and to identify barriers to their doing so. PARTICIPANTS AND METHODS: On October 11, 2005, we sent a Web-based survey via e-mail to 170 health care professionals who have face-to-face contacts with patients at our institution. These health care professionals included medical (physicians, n=15), associate (physician assistants and nurse practitioners, n=7), and support (nurses, radiation therapists, medical or nurse assistants, social workers, nutritionists, geneticist, chaplain, family counselor, and patient liaisons; n=148) staff members. The survey ended on October 31, 2005. For the purpose of this survey, having a written AD was defined as having both a living will and a power of attorney for health care. Key outcome measures of our study were existence of ADs, placement of ADs in the medical record, communication of ADs with loved ones and primary care physician, and factors that influenced the decision to have an AD. Statistical tests included the chi2 and Fisher exact tests. RESULTS: Of the 170 health care professionals to whom the survey was sent, 134 (79%) responded. Although 83% reported that they had discussed their wishes regarding future life-sustaining medical care with those closest to them, only 35% had a written AD (58% of medical staff, 50% of associate staff, and 32% of support staff). Among those with ADs, 66% had informed their primary care physician, and 71% were certain that their ADs were in their medical records. Older age (P less than .001), role as medical or associate staff (P=.05), and more years of work experience with patients with cancer (P=.05) were associated with having an AD, whereas sex, marital or partnership status, and number of children were not. Perceived lack of time was the most common barrier cited (45%). Among those without an AD, 75% reported having end-of-life discussions with family members or loved ones. CONCLUSION: Despite work experience with patients who have a high mortality rate, health care professionals at our cancer center do not adequately communicate (via a written AD) end-of-life planning decisions to their own primary care physicians.     

The expectations and experiences of children attending Burn Camps: a qualitative study.

The use of evaluation forms has increased with the steadily growing interest in child-centered research. The purpose of this study is 2-fold: 1) to examine the benefits of attending the National Burn Camp, a therapeutic recreation program set up in Belgium for burn-injured children aimed at alleviating the impact of their burns, and 2) to evaluate the camp program from the standpoint of the children, their parents, and the staff members to make improvements to the program. Evaluation forms were gathered from 19 children (12-18 years), parents (N = 14), and staff members (N = 20) who agreed to fill out open-ended questions at different times. Evaluation data demonstrated evidence of increased self-confidence, improved coping skills, developed social skills, new relationships, and a sense of achievement at having taken part in a therapeutic recreation program. Children genuinely benefit psychologically, according to the participants themselves, their parents, and staff members. Evaluation forms can provide additional and more profound explanatory information on the wishes and demands of the participants, their parents, and staff members. Moreover, they are of great importance when it comes to adapting and improving camp programs.     

Parental perspectives on end-of-life care in the pediatric intensive care unit

OBJECTIVE: To identify priorities for quality end-of-life care from the parents' perspective. DESIGN: Anonymous, self-administered questionnaire. SETTING: Three pediatric intensive care units in Boston. PARTICIPANTS: Parents of children who had died after withdrawal of life support. MEASUREMENT AND MAIN RESULTS: Parents' views of the adequacy of pain management, decision making, and social support during and after the death of their child were measured with the Parental Perspectives Questionnaire. Of 96 eligible households, 56 (58%) responded. In 90% of cases, physicians initiated discussion of withdrawal of life support, although nearly half of parents had considered it independently. Among decision-making factors, parents rated the quality of life, likelihood of improvement, and perception of their child's pain as most important. Twenty percent of parents disagreed that their children were comfortable in their final days. Fifty-five percent of parents felt that they had little to no control during their child's final days, and nearly a quarter reported that, if able, they would have made decisions differently. There were significant differences (p < .001) between the involvement of family, friends, and staff members at the time of death and greater agreement (p < .01) about the decision to withdraw support between parents and staff members than with other family members. CONCLUSIONS: Parents place the highest priorities on quality of life, likelihood of improvement, and perception of their child's pain when considering withdrawal of life support. Parents make such decisions and garner psychosocial support in the context of a social network that changes over time and includes healthcare professionals, family, and friends.     

恶性淋巴瘤患儿家属心理历程的质性研究

目的了解恶性淋巴瘤患儿的家属在陪伴子女诊断、治疗、康复过程中的真实心理感受，为临床护理人员对患儿家属进行心理支持提供借鉴。方法通过访谈形式，访问了6位恶性淋巴瘤患儿的家属，将获得的资料进行分析，整理，提出主题。结果患儿的家属在子女患有恶性肿瘤过程中承受着巨大的心理压力和经济压力，表现过程为初诊时的震惊、困惑、拒绝，逐渐转变成无奈接受，对未来持悲观心理。支持系统主要来自家人以及其他恶性淋巴瘤患儿家属。结论恶性淋巴瘤患儿家属需要深切人文关怀和情感支持，护理人员应采取个性化的护理措施，帮助、指导患儿及其家属提高生活质量，度过这一艰辛历程。     

Interactions between family members and staff in intensive care units--an observation and interview study

BACKGROUND: Research about interactions between family members and staff are sparse, although family members' needs and experiences in intensive care units are well researched areas. AIM: The aim was to describe and interpret interactions between family members and staff in intensive care units. METHODS: Interviews (n=24) with family members and repeated observations of interactions of family members and staff in intensive care units were performed and analysed together by means of content analysis. RESULTS: The initial interactions between staff and family members had a substantial effect on family members and influenced their further interactions with the staff. Two kinds of interactions were revealed; mutual understanding and mutual misunderstanding. Family members, who understood the explicit information and the implicit messages were open in communication with the staff, adjusted well to the system, were acknowledged by the staff and sometimes consoled. Family members, who had difficulties understanding information and implicit messages drew back from communication with staff, did not adjust to the system and were sometimes insulted by the staff. CONCLUSIONS: Unambiguous information from the staff is important for developing interactions of mutual understanding. The results may be a starting point for intensive care unit staff to reflect on how all family members are initially met and further informed and treated. Further research of family members' experiences of interactions with staff in a longitudinal perspective and the influence of critical illness on families are needed.     

Emergency staff survey on their role in pediatric injury prevention education-a pilot study

A pilot study to survey the attitudes of emergency department (ED) personnel regarding their role in injury prevention education in children and parents was conducted at a tertiary care trauma center. The survey consisted of 14 statements, asking staff members their level of agreement (from strongly agree to strongly disagree) on a forced-choice four-point scale. These were followed by two questions asking staff members to rank schools, physician's offices, emergency departments, and public health units on their value in providing injury prevention information to children and parents. Before the intervention (an in-service training program on the importance of documenting the circumstances of injury on a patient's chart), a 50% randomly selected sample of ED staff members was asked in May 1997 to complete the survey. After the data collection prepilot (4 months later), the remaining 50% was asked in September 1997 to complete the same questionnaire. Administration of the preintervention survey resulted in 53 of 62 surveys being returned (85%). The postintervention survey was completed by 35 of the 41 staff members still eligible (85%), those who were employed in the ED during the entire pilot project. There was no statistically significant difference between the pre- and post-pilot groups on any demographic characteristics. Staff members agreed least with the statement that ED physicians and staff members could impact the severity of injuries to children by providing counseling to parents (68.1% preintervention and 64.5% postintervention agreement). Of most significance was the fact that a lower percentage of staff members agreed postintervention that almost all injuries to children were avoidable. The emergency department was the lowest ranked information dissemination venue for both parents and children.     

Learning to cope and living with cancer. Learning-needs assessment in cancer patient education

Giving of information to cancer patients and their family members regarding the disease, the treatment procedures and the adaptation process for living with the uncertainty inherent in a diagnosis of cancer, is as reported often not effective due to peoples' failure to understand. The impact of emotional stress creates communication difficulties. Information not based on assessed learning needs and considered individual differences as to learning militates against proper understanding. In developing an educational programme a study has been carried out aiming to assess learning needs. Cancer patients (n = 50), their family members (n = 20) and staff members within cancer care (n = 30) were asked to answer a need assessment questionnaire. The patients/family members indicated an extensive desire to learn about cancer and its ramifications, whereas staff members indicated that they seldom were approached regarding some questions in the area. The findings support the appropriateness for providing a structured patient education programme based on assessed needs and planned to meet individual differences in learning readiness and learning capabilities, that would complement the information currently given by staff members.     

Informal in-hospital care in a rehabilitation setting in Greece: An estimation of the nursing staff required for substituting this care

Purpose. To explore: (a) the type and frequency of care-giving activities provided by family members in the Rehabilitation Setting (RS), (b) opportunities for family members to receive training in care-giving activities, (c) to what extent caregivers feel free to ask the nursing staff for help and (d) to estimate the number of nursing staff required to substitute this care and thus to estimate the money saved by the RS due to the in-hospital informal care.

Method. A convenience sample of 80 family members was selected. A questionnaire was developed to investigate several aspects of informal in-hospital care. Data was analysed using SPSS for Windows (Release 10.1).

Results. Cultural reasons and nursing staff shortage led 78.8% (n = 63) of the sample to provide informal in-hospital care. Oral and facial care (67.5%), help with getting dressed (62.5%), help with feeding (61.25%, n = 49), making patients' beds (57.5%, n = 46) and assistance with transferring patients from one hospital department to another (56.25%, n=45) was provided on a daily basis by the subjects. 48.75%, (n=39) changed sheets 1-2 times per week, while assistance with transfers from bed to wheel-chair and vice-versa (43.75%, n = 35) was provided 3-4 times per week. The estimated total time spent per week by the subjects on care-giving activities was 34,034 minutes that corresponds to a total of 75.6 working days or 15.12 working weeks. In order to substitute this care, the RS would need to hire 17 more assistant nurses, entailing a cost of from e14,450 to e20,060 per month.

Conclusions. Informal in-hospital care is provided by Greek families in the RS. Nursing care staff shortage combined with cultural factors are the main reasons for this phenomenon. However, it saves the RS and the Greek State money and policy makers should be looking for ways to overcome the nursing shortage.     

Better team management-better team care?

Team building should not be a 'bolt-on' extra, it should be a well planned, integrated part of developing teams and assisting their leaders. When asked to facilitate team building by a group of NHS managers we developed a framework which enabled individual members of staff to become more effective in the way they communicated with each other, their teams and in turn within the organization. Facing the challenge posed by complex organizational changes, staff were able to use 3 training days to increase and develop their awareness of the principles of teamwork, better team management, and how a process of leadership and team building could help yield better patient care.     

Use of complementary and alternative medicine by parents of children with HIV infection and asthma and well children

OBJECTIVE: Although the use of complementary and alternative medicine (CAM) in children is increasing, little is known about its use in children with human immunodeficiency virus (HIV) infection. This study investigated the use of CAM by parents of children with HIV infection (H), children with asthma (A), and well children (W). Our hypothesis was that parents of the H group are more likely to use CAM than parents of the W or A group because of the nature and severity of the illness. MATERIALS AND METHODS: Parents of 152 subjects [H (n = 46), A (n = 53), and W (n = 53)] were interviewed on the use of CAM for their children, types of CAM, reasons for use/nonuse, methods of payment, and perceived benefits for their children. RESULTS: Compared with parents of the W and A groups, parents of the H group were less likely to be employed, were less likely to have private insurance, were less likely to have a high school or college education, and were more likely to be black. Interestingly, 38% of the W parents used CAM in their children compared with 22% in the H group and 25% in the A group. More than 80% of all three groups paid out of pocket for their use of CAM in their children. Within these groups, H parents were more likely to want CAM as part of their child's medical care (H = 91% vs W = 75% and A = 67%, P = 0.02) and were more likely to believe that CAM was expensive (H = 78% vs W = 57% and A = 60%, P < 0.01). CONCLUSIONS: Our study revealed a relatively high rate of CAM usage by parents of all three study groups. Although parents of children with HIV infection were more likely to want CAM as part of their children's medical care, their rate of CAM usage was not higher than that in well children. This may be related to their socioeconomic factors. A larger and more diverse study population may provide more information on factors contributing to CAM usage in chronically ill and well children.     

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.     

Poor nutrition is a serious problem in children with cerebral palsy in Palawan, the Philippines

Children with cerebral palsy (CP) in developed countries have poor nutritional status; however there is little data from developing countries. In Palawan, in the Philippines, the nutritional status of 31 children with CP was compared to that of their siblings (n = 20) and a control group of neighbourhood children (n = 64), matched for age and sex. The children's weights, heights and armspans were measured. The heights of children with CP could not be measured and were estimated from their armspans using an equation relating height to armspan in siblings and controls. Haemoglobin levels of the study cases and siblings were measured. Siblings and controls had similar nutritional status. The children with CP had extremely poor nutritional status, and had significantly smaller weights for height, heights for age and weights for age than siblings or controls. Haemoglobin levels were not significantly different between the children with CP and their siblings. The nutritional status of children with quadriplegic CP was much poorer than that of similar children in the USA. The severity of malnutrition in children with CP is likely to be detrimental to their development, and a nutritional component should be incorporated into rehabilitation programmes. Also, there is a need to examine the nutritional status of children with CP in other developing countries.     

Capturing children's voices for quality improvement

PURPOSE: To query children about the perceptions of their inpatient healthcare experiences in order to improve care to make it more developmentally appropriate and responsive to children's needs and desires. STUDY DESIGN AND METHODS: Children (n = 120) were interviewed and their comments were recorded as they described the best and worst things about their hospitalization and made recommendations for change. They were approached at the time of discharge from a tertiary care unit. Content analysis was used to compare their responses within their developmental levels. Themes were developed, and data were co-coded for trustworthiness of findings. Quotes were extracted that illustrated the themes. RESULTS: Children provided insightful and specific data regarding the perceptions of their hospital experiences. Pain and discomfort were cited most frequently as the worst aspects of hospitalization and the areas most needing improvement. Play activities were valued by children of all ages. Their positive relationships with hospital staff were described frequently. The developmental stage of children determined the specificity and diversity of their comments. CLINICAL IMPLICATIONS: Children's unique perspectives should be sought regularly and their data included in ongoing programs of quality assessment. When only parents are queried, important and insightful perspectives of children are missed that could improve care quality.     

Children of parents with a mental illness visiting psychiatric facilities: perceptions of staff

Children of parents with mental illness have been identified as a hidden population within mental health services, despite many clients being parents. In Australia, children of parents with a mental illness have been the focus of initiatives aimed at promoting their health and well-being and developing family-focused services. However, there has been little focus on children visiting acute inpatient mental health facilities. The aim of this study was to understand the experiences of children, their parents and carers, and staff when children visit, to better inform service planning. A qualitative exploratory research framework was used, and data were gathered through interviews. This paper presents the findings from the perspective of staff. Findings indicated that staff experienced being in a dilemma about children visiting and there were barriers to implementing family-friendly services. While staff mostly agreed in principle that children's visiting was beneficial, there was a lack of local policy and guidelines, and ad hoc arrangements existed. In addition, staff were unsure of their role with children, felt ill-equipped to talk to children about mental illness; and lacked knowledge of age-appropriate resources. Models of inpatient care need to be developed with a family focus that acknowledges the parental roles of clients and supports children visiting.     

John Bowlby and James Robertson: theorists, scientists and crusaders for improvements in the care of children in hospital

AIMS: John Bowlby and James Robertson, two men who were extremely influential in the latter part of the 20th Century, combined scientific theory with evangelism to bring about changes in the way in which children were cared for in hospitals and other institutions. This paper discusses their work together, their theories and their influence on the care of children and paediatric nursing. BACKGROUND: Bowlby and Robertson collaborated early in their working relationship on research about separation of mother and child. Bowlby was the scientist who developed classic theories about maternal separation. Robertson focused his research on separation of mother and child due to hospital admission. Between the two of them, they derived a classic theory about the phases of 'protest', 'despair' and 'denial' (Bowlby called this last stage 'detachment') through which small children pass when isolated from their mothers for a length of time. DISCUSSION: Bowlby became an internationally recognized theorist, widely acclaimed and considered an expert in the field of maternal care and child development. Robertson, with his wife, Joyce, not only continued Bowlby's work investigating children separated from their mothers, but also took on the role of campaigner for the welfare of children in hospital. James Robertson, with his impressive speaking powers, established an international reputation proselytizing the need to admit parents to hospital with their children. The work of Bowlby and Robertson coincided with new knowledge about cross-infection, which had been one of the reasons for excluding parents from hospital wards. At the same time, and influenced by their work, community groups, which championed the idea of admitting parents with their children, developed. The combination of these factors provided a catalyst for changes within the health systems of many developed countries. Because of the theoretical work of Bowlby and Robertson's missionary zeal, government policies, staff attitudes and parents' expectations changed. Children's wards and hospitals in developed countries today admit parents as part of normal routine and actively involve them in the planning and implementation of their child's care.