Preparing the family for home tracheotomy care

Children with tracheotomy tubes are frequently cared for by nurses in critical care settings, as well as on general patient care units. These children require tracheotomies for a variety of reasons and often are ready to be discharged before they are ready to be decannulated. As a result, many children are cared for at home by their parents, other family members, or other care givers. Discharging a child home with a tracheotomy is a process that involves many people. The staff nurse plays a valuable role in providing education and support to the child and family. After discharge, otolaryngology nurse-clinicians provide some of the support and continuing education the families may need, while parents and school personnel assist the families with support in normalizing their lives and meeting the developmental needs of the child.     

Parental coping and activities during pediatric critical care.

OBJECTIVE: To investigate the relationship of locus of control, parental age, and state anxiety to parental coping and activities performed during hospitalization of a child in a pediatric critical care center. DESIGN: Cross-sectional. SETTING: Pediatric critical care center at a university medical center. PARTICIPANTS: A convenience sample of 47 parents of 47 children hospitalized in a critical care center. MAIN OUTCOME MEASURES: Parental coping strategies and activities performed during hospitalization in a critical care center. RESULTS: Older, more self-directed and less anxious parents were found to use coping strategies focusing on problem solving rather than on their emotional response to a child's hospitalization. Further, those who used the problem-focused coping modes were more likely to be involved in caring for the child, while parents who used emotion-focused coping modes participated less in care activities. CONCLUSIONS: Appropriate strategies to bolster coping and reduce stress of parents need to be constantly reassessed because coping mechanisms vary according to parental age, locus of control, anxiety level, and parental involvement in child-care activities. More research is needed in the changes of parental coping mechanisms with time and child-care activity, to assess the benefits of interventions planned to encourage a problem-focused approach.     

Supportive and palliative care needs of families of children who die from cancer: an Australian study

OBJECTIVE: To obtain feedback from parents of children who died from cancer about their understanding of palliative care, their experiences of palliative and supportive care received during their child's illness, and their palliative and supportive care needs. DESIGN: A qualitative study with semi-structured interviews. PARTICIPANTS: 24 parents from Perth (n = 10), Melbourne (n = 5), Brisbane (n = 5) and Sydney (n = 4). Setting: Five Australian tertiary paediatric oncology centres. Results Parents whose children died from cancer live within a context of chronic uncertainty and apprehension. Parents construed palliative care negatively as an independent process at the end of their children's lives rather than as a component of a wider and continuous process where children and their families are offered both curative and palliative care throughout the cancer trajectory. The concept of palliative care was perceived to be misunderstood by key health professionals involved in the care of the child and family. The importance and therapeutic value of authentic and honest relationships between health professionals and parents, and between health professionals and children were highlighted as a critical aspect of care. Also highlighted was the need to include children and adolescents in decision making, and for the delivery of compassionate end-of-life care that is sensitive to the developmental needs of the children, their parents and siblings. CONCLUSIONS: There is a need for health professionals to better understand the concept of palliative care, and factors that contribute to honest, open, authentic and therapeutic relationships of those concerned in the care of the dying child. This will facilitate a better understanding by both parents and their children with cancer, and acceptance of the integration of palliative and supportive care in routine cancer care.     

California healthy and ready to work transition health care guide: developmental guidelines for teaching health care self-care skills to children

This article presents developmental guidelines that can be used by parents and nurses for teaching children health care self-care skills. These guidelines are intended to provide a framework for instructing parents and nurses about the developmentally appropriate skills children can learn to become self sufficient in managing their own health care needs. The guidelines are based on the developmental frameworks of Piaget and Erikson and self-care models of Orem. Although general in scope, these guidelines can be individualized to the needs of each child.     

School-age children with asthma and their parents: relationships with health care providers

Health care providers, including nurses, physicians, and other personnel, are key figures who design and implement plans of care to help families manage childhood asthma, yet families' perceptions of relationships with these professionals has received limited study. Child and parent perspectives about relationships with their health care providers emerged as themes in a study that explored responsibility sharing between school-age children with asthma and their parents (Buford, 2004). Fourteen school-age children with asthma and 14 of their parents from 11 families participated in the study. Parents and, to a lesser extent, children, described aspects of their relationships with their health care providers that were supports or barriers to asthma management. Implications for nurses and other health care providers stem from these data and include the importance for health care providers to educate themselves and their patients about state-of-the-art asthma care. Education should be directed to both parents and their children. In addition, parents need to receive education about how to coach their children because the children depend on them for information and direction. Finally, nurses and other health care providers need to listen to parents and value their input about their children's conditions.     

Negotiation of care by children's nurses: lessons from research

Parental participation and role negotiation are central elements in family-centred care, but research suggests that such negotiation tends to be ad hoc, depending on the relationships developing between the family and health professionals. Lack of effective communication, professional expectations and issues of power and control often prevent open and mutual negotiation between families and health professionals, especially nurses. This article summarises key lessons from a critical review of relevant research literature (Corlett and Twycross 2006) which suggests that nursing staff often control parental participation leaving parents feeling disempowered and deskilled. Poor communication and lack of information sharing exacerbate the situation. Where parents do not comply with nurses' expectations conflict can arise, resulting in more anxiety for already stressed parents. Current health policy requires that health workers listen to children and their families, to actively involve them in the decision-making process and to plan care around their needs and wishes. Nurses need to be aware of the way they interact with parents and the control they may unwittingly exert. A greater emphasis on communication, interpersonal and negotiation skills within nurse education is also needed.     

Parent-to-parent support: a critical component of health care services for families.

Families of children with chronic medical conditions or disabilities face many unique difficulties. It is often necessary for them to assimilate technical medical information and participate in important decisions regarding their children's care before they have had time to adjust to their children's condition. Health care providers are not always available to help parents learn how to function in their dramatically changed roles. To adjust to their new parenting roles and work through feelings of confusion, denial, anxiety, guilt, anger, and depression, parents of children with special health care needs need opportunities to fully vent feelings, and to experience the grieving processes in their own way and at their own pace, in a nonthreatening, nonjudgmental environment. An informal support network is a powerful tool for accomplishing these tasks, for teaching day-to-day coping skills, and for supporting the establishment of new value systems that incorporate families' unique needs. The literature on family support documents ways in which parents of children with special health care needs are particularly qualified to help each other. This article briefly describes the philosophy of parent-to-parent support, its unique contributions in the health care setting, and the ways that health care providers can assist in creating an environment in which parents and professionals can work together more effectively.     

Opioid-induced constipation in children's palliative care

Accurate assessment and management of children's symptoms at the end of life is a vital part of the children's nurse role. Most children experience pain at this stage and opioids are the drug of choice in those requiring a palliative approach to care. Opioids are, however, not without side effects; the most common is constipation. This can cause additional stress and anxiety for children and their parents at what is already a difficult time. A number of assessment tools are available to assist nurses and other members of the care team to work with children and parents in identifying risk factors for constipation and its severity. Conventional management of opioid-induced constipation consists of stool softening or peristalsis stimulating laxatives, and often this is effective; however, laxatives also have side effects which can be distressing. This article looks at novel approaches to managing opioid-induced constipation that are beginning to come to the fore, although there is limited reference to their use in children's palliative care.     

The impact on families of respite care in a children's hospice program

With increasing trends towards home care of children with even the most complex conditions and care requirements, respite becomes critical in improving the quality of life for terminally ill children and their families. This article reports on the respite component of an evaluation project that examined the effect of the Canuck Place children's hospice program on the families it served during its first 30 months of operation. Canuck Place, located in Vancouver, British Columbia, Canada, is the first free-standing children's hospice in North America. Findings are derived from mail-out surveys to 144 families, face-to-face interviews with 18 families, and separate questionnaires specifically directed to parents who had used Canuck Place respite services. Sixty-five parents responded to the respite questions. They cited a wide range of benefits to the ill child, the child's siblings, and to the parents themselves; they also offered a few cautions. Our discussion focuses on three "lessons learned" from this unique investigation of respite within pediatric hospice care.     

Parental participation in pediatric surgical care

Hospitalization and surgery are stressful experiences for children and their parents. In recent years, pediatric health care has shifted toward family-centered care that is based on close and continuous involvement of the child's family members. To shape and improve how pediatric care is delivered, health care providers need to know what children and parents need, expect, and experience. Such knowledge would enable the development of appropriate, systematic, and effective routines to optimize care for all children. Parental participation is beneficial to children, parents, and health care facilities, but it is dependent on the existence of effective routines to facilitate adequate communication among all parties.     

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.     

The COPE program: a strategy to improve outcomes of critically ill young children and their parents

Critically ill young children and their parents are subjected to multiple stressors during hospitalization, which may predispose them to short- and long-term negative outcomes. Nurses who care for children who are critically ill and their families during and following their intensive care unit stay must be knowledgeable of the impact of a child's critical illness on the family and factors influencing adjustment to the stressful experience. Knowledge of these issues is essential in planning effective intervention strategies to enhance coping outcomes in this population. This article (a) discusses how young children and their parents are affected by critical illness; (b) outlines major sources of stress for families; (c) identifies factors influencing coping outcomes; and (d) describes the COPE program, a newly devised early intervention program for critically ill young children and their parents.     

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' perceptions of parental involvement in hospital care

Parental involvement is an essential element of quality of care for children in hospital. However, there is often confusion in role perception between parents and nurses which may be affected by nurses' attitudes, their ability to provide information, their communication and interpersonal skills and willingness to relinquish control. AIM: This study examined nurses' perceptions of parental involvement and communication with parents of children in hospital and explored differences in perceptions of recent graduate nurses and more experienced nurses. METHOD: Two focus groups were carried out at a university paediatric hospital in Sweden, one with experienced paediatric nurses (n = 7) and one with recent nursing graduates (n = 6). FINDINGS: Analysis of the discussions identified five themes: clarifying roles, information, work environment, support and clinical competence. These nurses confirmed the belief that involving parents in the child's care is an important part of nursing in paediatric care and suggested that the nurses should play the role of being the communicator with the parents. CONCLUSION: Nurses need to be aware of the impact their communication has on parents and help them to clarify their role as parents in hospital.     

Negotiating lay and professional roles in the care of children with complex health care needs

BACKGROUND: Children with complex health care needs are now being cared for at home as a result of medical advances and government policies emphasizing community-based care. The parents of these children are involved in providing care of a highly technical and intensive nature that in the past would have been the domain of professionals (particularly nurses). AIMS OF THE PAPER: To assess how the transfer of responsibility from professionals to parents was negotiated, the tensions and contradictions that can ensue, and the implications for professional nursing roles and relationships with parents. DESIGN: Using a Grounded Theory methodology, in-depth interviews were conducted with 23 mothers, 10 fathers and 44 professionals to gain insight into the experience of caring for children and supporting families in the community. FINDINGS: From the parents' perspective, their initial assumption of responsibility for the care of their child was not subject to negotiation with professionals. Prior to discharge, parents' feelings of obligations, their strong desire for their child to come home, and the absence of alternatives to parental care in the community, were the key motivating factors in their acceptance of responsibility for care-giving from professionals. The professionals participating in the study had concerns over whether this group of parents was given a choice in accepting responsibility and the degree of choice they could exercise in the face of professional power. However, it was following the initial discharge, as parents gained experience in caring for their child and in interacting with professionals, that role negotiation appeared to occur. CONCLUSION: This study supports other research that has found that professionals' expectations of parental involvement in the care of sick children role can act as a barrier to negotiation of roles. In this study, parental choice was also constrained initially by parents' feelings of obligation and by the lack of community services. Nurses are ideally placed to play the central role not only in ensuring that role negotiation and discussion actually occurs in practice, but also by asserting the need for appropriate community support services for families. Being on home territory, and in possession of expertise in care-giving and in managing encounters with professionals, provided parents with a sense of control with which to enter negotiations with professionals. It is important that changes in the balance of power does not lead to the development of parent-professional relationships that are characterized by conflict rather than partnership.     

The use of qualitative methods in the study of parents' experiences of care on a children's surgical ward

User satisfaction with the care of hospitalized children is examined in this paper It is argued that parents are proxy consumers but that their status is conditional on the way in which they exercize choices Parents' involvement in the care of their children means that the term 'user' is more appropriate than 'consumer' Methodological problems in the assessment of user satisfaction are discussed A study of the experiences of parents of 24 children discharged from a surgical ward of a children's hospital is described and the implications for the assessment of user satisfaction reviewed The study demonstrates that qualitative methods have value in the assessment of user satisfaction with care A particular strength of qualitative methods of inquiry is that limitations of users' choice in care can be assessed     

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.     

A study of parental involvement in pediatric hospital care: implications for clinical practice

BACKGROUND: Although it has become common practice for parents to stay with their sick child in hospital, most hospitals lack routines and staff guidelines for involving parents in care processes and decisions. AIM: To gain a deeper understanding of factors that influence parental involvement and to clarify the parental role in the hospital care of chronically ill children. METHODS: Semistructured interviews with 14 parents of chronically ill children. RESULTS: Four themes were identified: support, professionalism, work environment, and responsibility. These themes describe the experience and perceptions of parents who regularly spend time in the hospital with their children. CONCLUSIONS: Clinical practices regarding parental involvement need to be established to optimize the hospital care of chronically ill children.