过敏性紫癜患儿出院后延续护理需求的质性研究

目的了解过敏性紫癜患儿出院后护理需求的真实内容,为进一步开展延续护理提供参考。方法运用质性研究的方法,以深度访谈的方式收集2013年10月-2014年2月武汉市某三级甲等医院风湿免疫科的10例出院过敏性紫癜患儿的个案资料,并进行分析。结果 12例出院过敏性紫癜患儿护理需求多样,主要呈现3个方面:患儿及家长过敏性紫癜疾病相关知识缺乏;家庭环境下饮食或服药需求高;电话随访和门诊就诊需求高。出院过敏性紫癜患儿及家长需要关心和支持,需要延续护理服务形成规模并更加规范完善。结论出院过敏性紫癜患儿护理需求较高,医院应开展多种形式的院外护理模式,使延续护理服务惠及每一个出院过敏性紫癜患儿,以降低再住院率和提高患者满意度。     

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.     

Supportive and palliative care needs of families of children with life-threatening illnesses in Western Australia: evidence to guide the development of a palliative care service

OBJECTIVE: To obtain feedback from families of children receiving palliative and supportive care about their care needs in hospital and in community settings. DESIGN: A two-phase combined quantitative and qualitative study. SETTING: Western Australia. PARTICIPANTS: 134 parents and 20 service providers. RESULTS: Analysis indicated the concept of palliative care is poorly understood by health professionals and by parents. Many families are affected emotionally, financially and physically by the burden of caring for children with life threatening or chronic conditions requiring complex care at home. Parents indicated the need for clear and honest information about their child's condition and prognosis throughout the trajectory of illness and perceived this had been lacking. Families required financial and practical assistance with providing care from their children at home. Parents also wanted more practical resources and information to assist with the management of their child's nutrition and pain, as well as support for their other children. The level of respite (in home and residential) was perceived to be insufficient and inequitable. Parents also required access to, and advice from, multidisciplinary health professionals when caring for their child at home. There was a perceived lack of coordination between community services and the hospital. CONCLUSION: Education of health professionals and parents regarding the concepts and introduction of palliative and supportive care is required. Care for children and their families should be coordinated by a multidisciplinary team in consultation with children and their families, and linked and integrated with the treating hospital in collaboration with community services. More inclusive criteria are required for community services including practical aids and respite care.     

Strategies for feeling secure influence parents' participation in care

This study investigates what makes parents of hospitalized children feel secure and factors influencing their level of participation. It also studies, whether the degree to which parents participate affects their child's pain and sleep during hospitalization. Questionnaires were distributed to a series of parents whose children were discharged from two paediatric surgical wards and one paediatric medical-surgical ward at two university hospitals in Sweden. Parental security is almost equally distributed among three given alternatives: security derived from trusting that professionals know how to take care of the child; security derived from having control over what is happening to the child; and security derived from being the one who knows the child best. Depending upon the strategy chosen, parents want to participate at different levels in their child's care. The results indicate a relationship between parental participation and their estimation of their child's pain. The study confirms a pattern, developed in a previous study, in how parents adopt different strategies affecting their participation during their child's hospitalization. Some parents who wanted to participate in more aspects of their child's care seemed to think that their child had less pain than parents who preferred more limited participation.     

Alternate child care, history of hospitalization, and preschool child behavior

BACKGROUND: With more single mothers entering the workforce due to welfare reform efforts, more hospitalized children from single-parent families will have experienced alternate child care arrangements where routine care is provided by adults other than the child's mother. OBJECTIVES: To investigate with secondary analysis of data whether experience with alternate child care has a moderating effect on the relationship between hospitalization and behavior of preschool children living in female-headed single-parent families. METHOD: A sample of 60 preterm and 61 full-term children who were 3, 4, or 5 years old was recruited for the larger longitudinal study. Behavior problems were measured with the Child Behavior Checklist. History of hospitalization and alternate child care arrangements were measured with the Life History Calendar. RESULTS: Preschool children who experienced hospitalization without alternate child care experience had more somatic complaints, but those with both hospital and alternate child care experience had fewer aggressive behaviors than other children. For children with a history of hospitalization, aggressive behaviors decreased as the proportion of the child's life in alternate child care increased. CONCLUSIONS: Experience with alternate child care may ameliorate some of the negative effects of hospitalization, and potentially other novel and negative experiences, for preschool children. This could be due to child care providing positive experiences with separation from the mother, a peer group with which to talk about the novel experience, or actual instruction about the novel experience.     

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.     

Nurses' Views About the Barriers and Facilitators to Effective Management of Pediatric Pain

Children continue to experience moderate to severe pain during hospitalization. This paper presents data from two modified focus groups undertaken as part of a larger study exploring pediatric pain management practices in one hospital in the south of England. Thirty nurses took part in the focus groups and were asked questions about their views about the barriers and facilitators to effective pain management in the hospital. Participants identified a number of barriers which related to the staff, children and parents and the organization. Nurses indicated that they and the medical staff lacked knowledge about pain management. They also felt that staff shortages and a heavy workload detracted from the quality of the care they could provide. Several participants indicated that insufficient analgesic drugs were sometimes prescribed. Many of the barriers identified related to parents and children. It appears that nurses may not take as active a role as they could do in managing pediatric pain rather seeing it as the parents and child’s responsibility to let them know when they are experiencing pain. Nurses also felt that parents exaggerate their child’s pain and ask for analgesic drugs before their child needs them. There is a need to explore the interactions between nurses, children and parents in this context in more detail.     

Continuing care for the near-drowning child

The continuing care for a child survivor of a near-drowning accident presents a variety of challenges for the tertiary-care setting, community-based health care providers, and especially the family. The trauma the child receives from this type of neurologic insult coupled with the emotional issue of an accident such as a near drowning result in a long-term, usually lifetime situation of great stress and responsibilities for the family. Although long-term hospitalization is usually required for medical stabilization of the child, survivors of this type of injury will require some kind of continuing care outside of the hospital setting. In most instances, pediatric home care offers a reasonable alternative for the family. In the provision of skilled nursing support in the child's home environment, their medical needs can be met effectively. Additionally, home care offers a strong support to the families and can assist in fostering the long-term care environment parents must face if they are to successfully provide for their child at home. Planning for the child's discharge to home involves a comprehensive and coordinated approach to providing a community-based support network of care for the child and family. Additionally, parents must learn complicated, technical skills to meet the physical needs of their child. This process requires careful planning and implementation. During this time the hospital will assist the family in procuring the community-based services they will need. Once the child is discharged, the family focus is directed toward establishing positive work partnerships with the other service providers necessary to assist them in the care of their child. This process takes considerable planning and effort for all involved but, when successful, facilitates a positive, nurturing home care environment. The family remains the guiding force in this situation and ultimately determines if their child's care at home will be successful. In this context, success is not measured by recovery or cure but, instead, by the degree of enhancement the family receives in providing home-based care. The role of the home care nurse is an important one and is comprehensive in scope and responsibilities. The nurse not only delivers skilled care and treatment to the child but also offers support and assistance to the family. These home care nurses must be highly skilled and trained in the delivery of complex medical care and effectively provide the emotional and psychological support families of these children demand. An equally important function of the home care nurse is that of family advocate.(ABSTRACT TRUNCATED AT 400 WORDS)     

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.     

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' report of children's hospital care: what it means for your practice

PURPOSE: To determine the aspects of nursing practice that are predictive of parent satisfaction with their child's hospitalization. METHOD: A sample of 3,299 families whose children were hospitalized in a tertiary pediatric teaching hospital between 1995 and 1998 were surveyed. The survey covered their experiences during the child's hospitalization and their overall satisfaction with care. FINDINGS: Survey questions that were most strongly associated with overall satisfaction were questions about caring practices that are collaborations between nurses and parents. Satisfied parents reported nursing care that was tailored to their needs and preferences. CONCLUSIONS: These findings are consistent with Curley's model for nursing practice, which predicts better patient outcomes when nursing care is synergistic with patient characteristics.     

Continuing nursing care needs of children at time of discharge from one regional medical center in Sweden

Hospital nurses used an investigator designed survey instrument to record demographics and anticipated nursing needs of 29 children discharged from 7 units during a 1 month period. The median age of the children was 18 months and 77% of the sick children had one or more siblings. Parental leave enabled most parents to participate in the child's hospital care. Over three quarters of the families reported no support person available to assist them at home. At time of discharge 42% of the children required long-term nursing interventions related to chronic illness. Nurses trained parents visiting in the hospital for an average of 3 hours and 40 minutes per family before discharge. Nurses also arranged an informal system of follow-up telephone contact but few community referrals. With decreasing length of hospital stay, parents need a formal system of nursing support before and after the discharge of their child from a hospital.     

Mommy first

Parents of children with special health care needs are often required to assume responsibility for the complex care of their children. It is important for pediatric nurses to remember these parents are, first and foremost, the child's parents and primarily responsible for loving their child, providing a safe and secure home, and fostering their child's development as a person. Pediatric nurses should support the parents in the medical/nursing care of their child in whatever way possible so the parents have more time to parent. This account from a mother of a child with developmental delay helps remind us of our need to help support parents in being "parents first."     

Hospitalized children with chronic illness: parental caregiving needs and valuing parental expertise

Parents who care for a child with a chronic illness are forced to relinquish much of the control of the child's care when the child is hospitalized. By using the family systems theory as the underlying framework, the amount of control that parents of children with chronic illness wanted over their hospitalized child's care, and the degree to which parents felt health care professionals valued their expertise, was examined in a national sample of 50 parent caregivers. Participation in information sharing and technical care were areas over which parents wanted the most control. Nurses and attending physicians were rated highest in valuing parental expertise. Content analysis of an open-ended question on parental control revealed that parents felt a higher quality care was given at home than in the hospital; nurses were too busy or understaffed to provide optimal care in the hospital; and the child's control of care and decision making should increase as the child grew older.     

A descriptive study of the extent to which self-perceived needs of parents are met in paediatric units in Iceland

The purpose of this study was to identify the extent to which parents of 2-12-year-old hospitalized children perceive their needs to be met in paediatric units, what variables influence parents' perception, and whether parents need help from the hospital to meet their needs. Parents perceived that most of their needs were met fully or to some extent. The need to be able to stay with the child 24 h a day was perceived as fully met by all parents. Needs perceived as important but poorly met were as follows: written information about the child's health status, information about financial assistance and follow-up after discharge. Independent variables identified as being related to the extent to which individual needs were met were as follows: parents' age (p < or = 0.05), distance between home and hospital (p < or = 0.05), parents' education (p < or = 0.05), length of hospital stay (p < or = 0.01) and severity of child's illness (p < or = 0.01). Most parents perceived that they needed help from the hospital to meet their needs. These findings call for identification of effective interventions to meet parents' needs.     

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.     

Perioperative care of children in a transcultural context

As part of a large, comparative study of how children are cared for in developed and developing countries' hospitals, health care professionals and parents were asked questions relating to their beliefs about parental presence during anesthesia induction and in postanesthesia care units. Children were not questioned. The researcher compared parents' (n = 957) and staff members' (n = 780) responses between developed and developing countries. Results indicate that parents and staff members in developed and developing countries responded significantly differently (P < .000001) to whether they believe parents or relatives should stay with their children until anesthesia takes effect. More staff members in developing countries responded that parents should be present (P = .007). Cultural constructions (e.g., class) are believed to influence strongly how care is delivered in developing countries studied. Cultural constructions were not as important in the developed countries.     

Parental experiences: care of children with high and intermediate imperforate anus

In this study parental experiences of care of children with high and intermediate imperforate anus were evaluated. A group of 45 parents of children with high and intermediate imperforate anus and two control groups participated. Data collection with individual questionnaires concerning the child's hospital care, information to the parent and the child, and involvement in the care of the child were performed. Parents of children with imperforate anus reported being less satisfied with the care of their child, and they were less content with information about their child's treatment compared with the control groups. The parents had been extremely involved in the follow-up treatment. Constipation and fecal incontinence are common and involve suffering for the children and their parents. Parents have to be motivated and supportive and have a great deal of patience to be able to put up with caring for these children, and it seems as if health care professionals have underestimated their problems.     

Unaccompanied hospitalized children: a review of the literature and incidence study

The aim of this study was to review literature on unaccompanied hospitalized children and report the incidence at a pediatric hospital over 2 weeks. The philosophical model of most pediatric hospitals is family-centered care (FCC) and reducing separation effects. Although the FCC model includes parents/guardians as collaborators and participants in the care of the child, parents cannot always be present. Nurses try to meet the needs of unaccompanied children. Children and parents express that they want to be together, but many parents have obstacles to participation including increased expectations. The incidence study found that about one third of children were sometimes unaccompanied.     

Family involvement in the care of a hospitalised child: a questionnaire survey of Mozambican family caregivers

Background

Previous research from Western and Eastern countries shows that parents of a sick child want to be involved and to participate during a child's hospitalisation. However, the stay can be stressful and parents have their own needs. Conditions and cultural constructs are different among countries.No published study on parents’ or close family caregivers’ involvement and participation during paediatric hospitalization has been found for an African population.

Objective

The aim of this study was to articulate Mozambican family caregivers’ expressed needs, expectations and experiences of hospital care and hospital staff.

Setting and participants

The study was conducted at the Paediatric Clinic at the Central Hospital in Maputo, Mozambique. A sample of 100 family caregivers was chosen, representing one third of all family caregivers of hospitalised children over a one-month period.

Design and method

A cross-sectional study was conducted, using a questionnaire.

Results

Participating Mozambican family caregivers have, for the most part, a low level of education and reduced socio-economic conditions. This made the admission to and the time in hospital hard to cope with, and difficult for them to understand. The study showed that they were badly informed of anything to do with hospitalisation. They needed explanation and support to make the hospital situation less intimidating.Hospital staff's behaviour was to some extent characterised by attentiveness, kindness, and sympathy, but it was also shown that the family caregivers had experiences of communication difficulties and of being neglected.

Conclusion

The result, in this Sub-Saharan African context, shows that parents or family caregivers have a desire to be involved in the care of their hospitalised child, much the same as has been shown in studies in Western and Eastern countries. But Mozambican family caregivers’ expectations, needs and experiences are rooted not only in poverty, their household situation and the health system, but also in the hierarchical construct of their culture. All these factors influence their communication and relationships. Hospital staff is perceived to be superior. To empower the family caregivers to take part in the caring process in a cultural sensitive way is therefore of great importance.