Decision-making during hospitalization: parents' and children's involvement

Background. Ethical duties of health professionals include the obligation to enhance their patients’ competence and ability to participate. Aims and objectives. To explore what kind of decisions and how these decisions were made during a child's hospitalization. Design. During a 9‐week period 24 children and their parents were followed during the course of events at the hospital. In total 135 hours of observations were made and analysed in two steps. Results. In most of the situations one or both parents were present with the child. Most decisions were of a medical nature, and commonly decisions were made in consultation with those affected by the decision. Although one or more persons protested in 83 of the 218 described situations, decisions were seldom reconsidered. Conclusions. The children and their parents were usually involved in the decision‐making process. Children and parents made few decisions themselves and even if they disagreed with the decision made, few decisions were reconsidered. Relevance to clinical practice. Having a voice in decision‐making helps the child to develop a sense of himself as a person and gives the parents a feeling that they are part of a team giving their child optimal care during hospitalization. Promoting children's rights is one of the most important roles for the children's nurse.     

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

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

Time management: realities for parents living with children with motor deficiencies]

A quantitative study involving 244 families from three health and social service regions of Quebec was undertaken to explore how families function. Fourteen families agreed to participate in the qualitative part of this study. Twenty-eight parents participated through an in-depth interview. During the interviews, the impact of the presence of a child with a motor disability on the parents' use of time was discussed. An analysis of the themes and categories highlighted the different aspects of the impact of a handicapped child on the parents' use of time in relation to the four spheres of life. In fact, the parents that were interviewed indicated that the presence of their child greatly influenced the time they had available for their personal, conjugal and family life as well as for doing any paid work. In general, mothers devoted more time than fathers to the care of the child. This situation has a direct impact on the way the mothers manage their time. Based on an analysis of the respondents' comments, the author recommends to offer support to the parents in order to assist them with time management.     

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.     

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.     

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.     

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

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

Parental role in decision making about pediatric cardiac transplantation: familial and ethical considerations

Parents of children with complex or terminal heart conditions often face agonizing decisions about cardiac transplantation. There are differences in the level of involvement that parents prefer when making such decisions. The purpose of this study was to identify and describe parents' preferences for their roles in decisions related to cardiac transplantation. A prospective ethnographic method was used to study 24 parents of 15 children prior to their decision of accepting or rejecting the transplant option for their children. Findings revealed that the style of parent decision making ranged from a desire to make an independent, autonomous choice to a wish for an authoritarian, paternalistic choice. Nurses and physicians can best support families in this situation, showing sensitivity to the steps that parents use to make their decisions. An ethical model of decision making is proposed that includes respect for differences in beliefs and values of all persons involved in the transplantation discussion.     

一位淋巴癌患儿父母亲对其教养态度和行为改变之探讨

探讨一个癌症家庭因孩子罹患淋巴癌后其父母对其教养态度及行为改变的因素。笔者于某医学中心儿科病房实习期间，观察整个家庭于患儿住院期间父母亲与患儿的互动模式。结果发现，罹患癌症患儿父母的教养态度和行为，会因患儿罹患癌症的疾病而有“父母亲准许患儿对父母生气”、“父母亲较会宠爱患儿”及“父母亲无法制定一套应遵守的生活规定来教育患儿”等3点明显的状况出现在此次照护患儿个案的家庭中；此篇文章研究结果，期可作为儿科病房护理人员在临床上照护此类癌症患儿以及未来发展父母亲教养患儿态度的架构之参考。     

Comparing Psychological Adaptation to having a Disease Gene in Affected Individuals and Unaffected Carrier Parents

Health care professionals are in an ideal situation to help families inform their children about genetic conditions. In families where there is a child with a known genetic condition, parents make decisions about when and how to convey information to their children, however, little is known about how parents make these decisions. The purpose of this qualitative analysis was to examine parents' beliefs and strategies related to sharing information with their children. The sample consisted of 139 parents of children with sickle cell disease, phenylketonuria, cystic fibrosis, Marfan syndrome, neurofibromatosis, hemophilia, and von Willebrand disease. Audio recorded, semi-structured interviews were transcribed verbatim, processed, and coded using the ATLAS.ti software. Thematic analysis found: parents share information and develop specific strategies within a context of normalizing the child's life; parents' decisions to share information are based on a developmental framework; parental strategies for sharing information with children may differ when the child has a potentially life-limiting genetic condition. Findings emphasize the need to use a family developmental perspective when working with families of children with genetic conditions. These findings will provide new information about how families manage information and provide direction for care of families in which a child has a genetic condition.     

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.     

Children's consent to treatment: using a scale to assess degree of self-determination

Discussion and debate regarding decision-making that is 'in the best interest of the child' and that also considers the child's voice in these decisions have increased in recent years. A study was undertaken to identify everyday situations in medical and nursing care in which children had been allowed to have a voice or been denied the right. Twenty-six hospitalized children, ages 6 to 17 years, and 21 parents were interviewed concerning their experiences with hospitalization. The interviews contained examples of 100 situations in which the children could have had a say in decisions concerning their care and treatment. An instrument describing five levels of self-determination was used to analyze the situations. The results showed that there are situations in the daily care of children who are hospitalized where it is possible to discuss the degree of self-determination of the child. To different degrees, staff members honored children's choices in questions concerning their own health.     

家长对"以家庭为中心护理"的认识

目的探讨家长对护理人员提供"以家庭为中心护理"的认识.方法目的抽样选择180例住院患儿的家长,采用美国波士顿儿童医院的"以家庭为中心护理"量表,在患儿出院前1天对其家长进行一对一调查.结果护士提供"以家庭为中心护理"的一致性与家长认为的重要性之间的平均匹配系数为0.59,范围在0.29～0.88.结论我院护士提供的以家庭为中心的护理措施,能满足家长和孩子生理上的需求及孩子和家长在一起的需求,能让孩子感觉受到很好的照顾.在关注孩子及家庭的心理、行为,为家长提供信息和心理支持,以及鼓励家长参与性方面与美国波士顿儿童医院的现况存在一定距离.     

Parents need to protect: influences,risks and tensions for parents of prepubertal children born with ambiguous genitalia

Aim and objectives. The aim of the study was to explore parents’ experiences of and the influences, risks and tensions associated with their child’s genital ambiguity and the place reconstructive surgeries had in their lives. Background. Research into the clinical management of disorders of sex development is a complex and growing field of study. A small number of studies have indicated that the decisions parents make with regard to their child’s care during infancy are confounded by moral, social and emotional factors which can influence their choices. Design. Narrative methods. Methods. In‐depth interviews elicited stories from 10 mothers and five fathers of 11 prepubertal children. Results. A key theme from the data focused on the parents’ motivations to protect their child from the real or perceived threats arising from other people’s attitudes and responses to their ambiguous genitalia. Several rationales for their protective behaviours were described, which encouraged the parents to actively manage their child’s care. Conclusion. The dilemmas that parents face in the complex and challenging situation following the birth of a child with ambiguous genitalia require early support from insightful professionals such as nurses. This support could better prepare the parents to recognise and discuss their protective behaviours and the impact these may have on their child’s future. Relevance to clinical practice. These findings draw attention to the parents’ need for nurses to be knowledgeable about the impact that disorders of sex development can have on family’s emotional, psychosocial well‐being and decision‐making. Nurses’ awareness of the debate surrounding genital surgeries is important if they are to understand the motivations that underpin parents’ decision‐making and how to support them sensitively. Nurses are the health professionals who have the most consistent direct contact with these families throughout the child’s life and, therefore, can provide support in the ongoing decision‐making process.     

Parental emotional responses to their child's pain: the role of dispositional empathy and catastrophizing about their child's pain.

Little is known about how a child's experience of pain affects his or her parents. Using a vignette methodology, this study investigated the emotional responses of parents who were asked to imagine different painful situations that their child might experience. A sample of 650 parents of school children (325 mothers; 325 fathers) read 8 short stories/vignettes about their child, which varied in terms of type of situation (pain vs other stressful situation), intensity (high vs low), and frequency of occurrence (high vs low). The role of individual differences in parental catastrophizing about their child's pain, catastrophizing about their own pain, dispositional empathy, and gender was also investigated. Parents' dispositional empathy was found to have an impact on parental distress and concern for their child. Catastrophizing about their child's pain had a unique contribution to parents' emotional responses to the vignettes describing their child in pain, beyond the influence of other variables. The impact of parental catastrophizing about their child's pain was most pronounced for parental distress, probably reflecting the high threat value that they attribute to their child's pain. The findings are discussed within recent models of empathy and pain, delineating possible relationships with parents' behavioral responses to their child's pain. PERSPECTIVE: This vignette study found preliminary evidence for the importance of parent characteristics, beyond situational characteristics, in parental emotional responses to their child's pain. The findings provide indications for the processes implied in parental helping behavior.     

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.     

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.     

Life support decisions for extremely premature infants: report of a pilot study

The purpose of this pilot study was to describe decision making and the decision support needs of parents, physicians, and nurses regarding life support decisions made over time prenatally and postnatally for extremely premature infants. Using the collective case study method, one prenatal, one postnatal, and one postdeath, if the infant had died, tape-recorded interviews were conducted with each parent. With parents' permission, prenatal interviews were done with the physicians and nurses who talked to them about life support decisions for their infants. Twenty-five tape-recorded interviews were conducted with six cases (six mothers, two fathers, six physicians, and two nurses). Hospital records were reviewed for documentation of life support decisions. Results of this pilot study demonstrated that most parents wanted a model of shared decision making and perceived that they were informed and involved in making decisions. Parents felt that to be involved in decision making they needed information and recommendations from physicians. Parents also stressed the importance of encouragement and hope. In contrast, physicians informed parents but most physicians felt that parents were the decision makers. Physicians used parameters to offer options or involve parents in decisions and became very directive at certain gestational ages. Nurses reported that they believed that parents needed information from the physician first, then they would reinforce information. The results of this study offer an initial understanding of the decision support needs of parents.