以家庭为中心儿科护理模式创建与评价

目的：探索以家庭为中心儿科护理模式,提升患儿及家长的满意度和患儿安全。方法：创建以家庭为中心儿科护理模式,包括制定以家庭为中心儿科护理政策,配备数量充足和资历合格的护理人员,明确总责护士和责任护士的具体职责,对临床护理人员进行以家庭为中心儿科护理理论和实践的培训与考核,研制工具以评价护理人员执行以家庭为中心护理措施的情况,评价以家庭为中心儿科护理模式的实施效果。结果：患儿家长对以家庭为中心儿科护理模式的总体满意度为93.5%,患儿安全指标如给药错误发生率、跌倒/坠床发生率明显下降。结论：把以家庭为中心儿科护理理念转化为行动,深入到儿科护理实践的方方面面是一个长期持久的过程。而在患儿危机时刻,让家长和孩子在一起更是一个巨大的挑战,需要医护人员和患儿家长共同努力。     

The Development of Trust in Parents of Hospitalized Children

ISSUES AND PURPOSE The purpose of this study was to investigate the development of trust in parents of hospitalized children. METHODS Using grounded theory, semistructured interviews were conducted with 15 parents of children previously hospitalized, focusing on parents' experiences during their child's hospitalization. Data were analyzed using a constant comparative process. Themes and the core variable were identified and a model of trust developed. RESULTS The core variable related to the development of trust in healthcare providers was whether parents' expectations for care were met. Thematic areas that influenced whether expectations for care were met included preexisting trust; evaluation of care, including evaluation of technical skills and the meeting of parental and child needs; and behaviors of nurses and other healthcare providers that inhibited and fostered trust. PRACTICE IMPLICATIONS Strategies to enhance trust are discussed.     

Psychological care of children and family in the critical care setting

Admission to the critical care setting can be a traumatic experience for a child and his or her parents. Besides providing physical care, the nurses should assess the psychological and emotional responses of the children and their parents. By integrating the child's psychosocial development and the principles of family-centered care into critical care nursing, the impacts of emergency admission on hospitalized children and their families can be reduced in order to facilitate adaptation on the part of the families.     

ADMISSION: A CRUCIAL POINT IN RELATIONSHIP BUILDING BETWEEN PARENTS AND STAFF IN CHILD PSYCHIATRIC UNITS

The admission of a child to a psychiatric unit is difficult for parents. While many articles about admissions can be discovered in the literature, few address the process of admission. A grounded theory study was undertaken to describe and explain the relationships that develop between parents and nurses in child psychiatric units. The crucial nature of the admission process was discovered and is the focus of this article. Theoretical sampling was used. Data were collected by interviewing parents and the nursing staff working with the parents. In addition, participant observation was used. Data were analyzed using the constant comparative method. Parents often came to the unit expecting to be blamed for their child's problems. When nurses responded with reassurance and caring, the parents' engagement was enhanced. During admission, expectations of parents and nurses influenced the relationship. In addition, the study discovered ways that nursing routines influence the relationship during the admission period.     

Development of a family liaison model during operative procedures.

The essence of family-centered care is the provision, by all health professionals, of psychosocially supportive care that fosters family integrity and functioning. Data from a hospital-based satisfaction survey at The Children's Hospital of Philadelphia (CHOP) indicated that the primary reason for parents being "less than completely satisfied" was lack of communication. A search of recent literature suggests also that breakdown in family-centered care in intensive care units is neither new nor unique. The purpose of this article is to describe how efforts to improve communication with parents and families led to the development of a family liaison program and an expanded role for staff nurses in the Cardiac Intensive Care Unit (CICU). The goals of this family liaison program were three-fold: to facilitate establishment of a relationship between CICU nursing staff, parents, and families at the earliest possible point in time; to ensure communication with parents and families at regular intervals during their child's surgery; and to promote practice that incorporates principles of family-centered care within the CICU. The design and implementation of such a program presented nurses in the CICU with both a challenge and an opportunity to take an innovative approach to meeting the fundamental need for information reported by parents and families, and echoed throughout nursing literature. This family liaison program serves to educate parents and families, communicate updates, provide physical and emotional support, and establish continuity of care for the patient and family. Additionally, nurses involved in the program have given positive feedback regarding their expanded role in this family-centered care model.     

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.     

Parent or nurse? The experience of being the parent of a technology‐dependent child

AIMS: This paper reports a study exploring parents' experiences of caring for a child who is dependent on medical technology, and in particular of performing clinical procedures on their own children. BACKGROUND: A group of children with a continuing need for the support of medical technology have emerged in community settings as a result of medical advances and government policies. Caring for these children has a significant social and emotional impact on parents, because of their specialized and intensive care needs. Obtaining appropriate and coordinated home support services is problematic. METHODS: Grounded theory techniques were used, and in-depth interviews were conducted with the parents of 24 children. FINDINGS: Parents' accounts revealed that their constructions of parenting were shaped by the nature of their role in caring for their child and by the transformation of their homes by medical equipment and personnel. They described themselves as having a role that had both parenting and nursing dimensions. Parents managed this tension and defined their role and relationship to their child to be primarily one of parenting by differentiating parental care-giving and its underpinning knowledge from that of professionals, particularly nurses. CONCLUSIONS: Parenting a technology-dependent child alters the meaning of parenting. Professionals need to recognize that providing care has a substantial emotional dimension for parents, and that they need opportunities to discuss their feelings about caregiving and what it means for their parenting identity and their relationship with their child. A key professional nursing role will be giving emotional support and supporting parents' coping strategies. Parents' perceptions of nurses raise questions about whether nurses' caregiving is individualized to the needs of the child and family, and whether parental expertise is recognized.     

Nurses' beliefs about family involvement in a children's hospital.

Children's hospitals throughout North America have implemented many changes during the past 15 years. In recognition of the central role of parents in the lives of their children, policies and procedures have been implemented to enable parents to participate in various aspects of their children's care. However, the extent to which attitudes of nurses have changed to support a more active parental role is less evident. In a project to formulate a philosophy of nursing for a children's hospital, 22 nurses were asked a wide range of questions about nursing and family-centered care. Although all nurses expressed explicit support for the concept of family-centered care, some of their practices and beliefs suggested otherwise. This article describes their responses and suggests recommendations for future research, education, and nursing practice.     

The needs of parents of pediatric oncology patients during the palliative care phase

The death of a child is considered one of the greatest stresses a parent can experience. It has been suggested that death from childhood malignancies is more stressful for parents than death due to other chronic diseases. The purpose of this qualitative study is to identify parents' perceptions of their needs while their child was dying of cancer. Twelve parents of eight children, who died of various types of cancer 1 to 3 years ago, were interviewed by the primary investigator. These children died either in hospital or at home. Interviews were tape recorded, transcribed and analyzed by the investigators. Three needs were identified: (1) The need to have the child recognized as special while retaining as much normality within the child's and family's lives as possible; (2) The need for caring and connectedness with health care professionals; and (3) The need to retain responsiblity of parenting their dying child. Findings suggest that parental needs are similar regardles of where the death occurred. Implications for nursing practice and areas for further research were identified.     

Parental reports of changes and challenges that result from parenting a child with cancer

Cancer in a child leads to a more stressful family life, including problems in adjusting to the situation. The aim of this study was to identify the parents' experience of problems related to their child's/adolescent's cancer and the effect of those problems on the parents' life situation. Swedish parents of 15 children and adolescents with varying diagnoses and treatments were interviewed using qualitative methods. The interview data were analyzed by two researchers using a constant comparative method. The results included eight categories of problems influencing the parents' life situation: watching our child suffer; being governed by our child's disease; behaving differently as a family member; experiencing strong feelings and reactions; trying to cope; dealing with the reactions of others; finding support from others; and evaluating the quality of care. Seven of these categories validate previously reported parental concerns, but one, evaluating the quality of care, has not been previously reported. Study findings can be used to help sensitize health care personnel to the problems experienced by parents of children and adolescents with cancer and the capacity parents have to deal with the problems.     

Information-seeking behaviours and decision-making process of parents of children with cancer

PurposeThis study aimed to explore the information-seeking behaviours, perceptions and decision-making experiences of parents of children with cancer by employing semi-structured interviews.Methods and sampleA qualitative research design was used to assess the information-seeking behaviours, perceptions and decision-making processes used by parents in Turkey whose children have cancer. Interviews were conducted with 15 parents of children with cancer using a semi-structured interview schedule. The interviews were recorded and transcribed verbatim.ResultsSix main issues emerged. Issues were related to parents' information needs, the sources of information, difficulties that the parents encountered when seeking information, the decision-making process, the factors affecting decision-making, and expectations from the health team. Information resources for parents included medical doctors and nurses, the internet, friends and the parents of other children who were staying in the hospital. The parents mostly sought information about their child's illness, prognoses, treatment, side-effects and care giving issues. The parents expressed that they were directed primarily by health care providers during their decision-making process.ConclusionsAdequate and systematic information pertaining to illness, treatment, prognosis and child care must be provided by health care professionals throughout the illness process. In addition, individual guidance and spare time are key components to helping parents make decisions about their children with cancer.     

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.     

Negotiation of parental roles within family-centred care: a review of the research

Aims and objectives. To review research published in the past 15 years about how children's nurses’ negotiate with parents in relation to family‐centred care. Background. Family‐centred care is a basic tenet of children's nursing and requires a process of negotiation between health professionals and the family, which results in shared decision‐making about what the child's care will be and who will provide this. The literature highlights inconsistencies in the degree to which nurses are willing to negotiate with parents and allow them to participate in decisions regarding care of their child. There is need to explore further the extent to which nurses communicate and negotiate shared care with children and their parents. Conclusions. Three themes emerged from this review of the literature relating to whether role negotiation occurred in practice, parental expectations of participation in their child's care and issues relating to power and control. Parents wanted to be involved in their child's care but found that nurses’ lack of communication and limited negotiation meant that this did not always occur. Nurses appeared to have clear ideas about what nursing care parents could be involved with and did not routinely negotiate with parents in this context. Relevance to clinical practice. For family‐centred care to be a reality nurses need to negotiate and communicate with children and their families effectively. Parents need to be able to negotiate with health staff what this participation will involve and to negotiate new roles for themselves in sharing care of their sick child. Parents should be involved in the decision‐making process. However, research suggests that a lack of effective communication, professional expectations and issues of power and control often inhibit open and mutual negotiation between families and nurses.     

A pilot study to evaluate in-hospital care by mothers

Believing that family-centered care is beneficial to children with cancer, the staff at Southampton General Hospital in the United Kingdom decided to consider instituting care by parents. Before full implementation of care by parents, a pilot study involving teaching five mothers of pediatric oncology patients how to administer intravenous (IV) antibiotics to their child was performed. The basis for selecting antibiotic administration was that if the mothers were capable of performing such a complex task, they would likely be able to be involved in the total care of their child. Mothers' views on the teaching program were sought using taped interviews, and the data were analyzed using a line-by-line constant-comparison analysis. All mothers in the study were capable of performing the procedure and all were willing to do so. Mothers emphasized the fact that they often feel stressed and out of control because of the impact of disease and treatment, and many important issues were raised in relation to this. Nurses' attitudes towards care by parents requires clarifying and changes need to take place if this concept is to progress. Negotiation to allow mutual understanding between parents and nurses is essential to the successful implementation of such a care approach.     

A Philosophy of Care for a Neonatal Intensive Care Unit

Crisis reactions, a stressful environment, infant care practices, and nurse behavior may cause difficulties in entering the natural parental role for parents of infants who are admitted to a neonatal intensive care unit (NICU). In connection with discussions in the Uppsala NICU on what constitutes good care, a philosophy of care, based on Callista Roy's adaptation model, was formulated for the purpose of providing developmentally supportive, family-centered care, and for defining good care and the professional nurse role. The philosophy describes the infant's needs and environment. Caring activities focus on support of the infant's and his parent's roles and self-concept in their progress towards independence from professional assistance. The philosophy is an essential component in the introductory program which integrates newly recruited personnel from different disciplines into the unit. It is presented as a suggestion of how a model-based philosophy of care can be formulated by operationalization of the theoretical concepts of a nursing model.     

Parents’ Perceptions of the Impact of Information at a Voiding Cystourethrogram of Their Child: An Example of Person-Centered Care in Radiography

Voiding cystourethrogram (VCUG) is a common pediatric invasive diagnostic imaging examination to assess the urinary tract. The examination is associated with a high level of distress for both the child and the parents. Parents' ability to manage their child's situation depends, among other things, on the information they receive from the health care provider. The aim of the study was to explore the impact of information at a VCUG of a child as perceived by the parent. Phenomenography was used for the study design and analysis. A face-to-face semistructured interview with open-ended questions was conducted with 12 parents after their child's VCUG. Two categories of parents' perception of the impact of information emerged: keeping the child in focus and establishing a relationship. When receiving information before and during the VCUG, the parents perceived that they could be present for and support the child and make decisions in relation to the child's needs. The parents perceived that the radiology nurse had the expertise to provide information in a professional manner, which established a relationship between the parties. The results revealed that by accepting, questioning, and understanding VCUG health care information, the parents were able to be attentive to their child and were an integral part of person-centered care. The radiology nurse is pivotal in promoting person-centered care by tailoring VCUG health care information to enable shared decision-making and establish a relationship with parents in the best interest of the child during the examination.     

Hope and Siege: The Experiences of Parents Whose Children Were Placed in Residential Care

This qualitative study focused on research into the impact on parents of children's out-of-home placement. Twelve couples (24 parents) were interviewed. Three major themes emerged: (a) parents' perception of out-of-home placement as necessary because of children's destructive behavior and parents' victimhood; (b) parents' acknowledgment of positive changes in the child and the family, their pain surrounding the child's pressurizing to return home and fear of regression if this should come about; (c) guilt as a major emotion that impacts their couple relationship. The study results are evaluated in the context of research on parents' reactions to children's removal from home.     

Family–school nurse partnership in primary school health care

Scand J Caring Sci; 2013; 27; 195–202 Family–school nurse partnership in primary school health care Background: The foundation of the health and well‐being of a child in primary school age is the family. To promote the child’s comprehensive health, we must develop the cooperation between the family and the primary school nurse. Aim: The aim of the study was to develop a family nursing oriented substantive theory of cooperation between primary school nurses and families. Method: The study used grounded theory based on Straussian principles. Data were collected from sixth‐graders (N = 22) using group discussions. Interviews were conducted with parents (N = 19), and the views of school nurses (N = 20) on their cooperation with families were obtained via free form essays. Findings: The core concept of the theory describing cooperation between primary school nurses and families is problem‐based communication. As a result of the analysis, nine‐2‐dimensional concepts were formed to describe this cooperation. The theory is structured further by four dimensions, which contain concepts explaining them and which also describe the relationships between the different concepts. These dimensions are the meeting between the school nurse and the family, mutual exchange of information, attending to the child’s health monitoring and being at school for the child and family. The substantive theory describing cooperation between the primary school nurse and family entails the concepts formed in the analysis, their interrelationships, as well as, the core concept. Conclusions: Primary school nurses can apply the resulting theory while working with families and while developing this cooperation. This theory can also be implemented in developing nursing education.