Rearing the Child Who Is Technology Dependent: Perceptions of Parents and Home Care Nurses

ISSUES AND PURPOSE. Most children who are dependent on technology for survival live with their families at home. This study explores the perceptions of parents and home care nurses regarding rearing the technology-dependent child.
DESIGN AND METHODS. In this qualitative study, interviews were conducted with 16 parents whose child is technology dependent and 15 registered nurses who provided home care.
RESULTS. Rearing the child who is technology dependent is similar to but different from raising other children. Parental communication and negotiation of child-rearing expectations with home care nurses is essential.
PRACTICE IMPLICATIONS. Improved collaboration and communication between parents and nurses may reduce parental stress and enhance development for children who are dependent on technology.     

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."     

Nursing telephone triage and its influence on parents' choice of care for febrile children

Nursing telephone triage is a mechanism whereby parents call for advice and referrals. One common call in pediatrics concerns children's fever, which may be managed at home. Giving parents proper advice may avoid unnecessary visits. This study investigated whether home-care advice given by nurses changed parents' original preference for care. Data were collected using an existing database to determine parents' preference for location of care before and actual location of care after a call. Of the 110 calls, 73 parents wanted a physician or emergency department visit but 53 followed nursing advice for home care. Findings suggest that although most parents wanted to have their child seen, a majority followed nursing advice for home care.     

Neonatal intensive care in the home

As the trend toward early discharge and home care of medically fragile neonates continues, parents find themselves thrust into a lifestyle for which they are unprepared. They must quickly adjust to a new daily routine and new home environment. They watch as part of their home is transformed into a mini intensive care unit with the kind of high-tech equipment and supplies once exclusively reserved for hospital settings. Parents also must learn to live with limited privacy because home care nurses and other providers become a visible presence and a daily reminder that their lives have been forever altered.     

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.     

Guilt & grief. When daughters place mothers in nursing homes

In the US there is a persistent myth that adult children do not care for their aging, dependent parents. Also, nursing home placement of a parent is still perceived as a deviant and selfish act by adult children. Adult daughters experience a relationship loss with their mothers' nursing home placement and progressive deterioration. Daughters experience both recurring guilt and loss with grieving throughout their mothers' nursing home stay and believe that these emotional feelings will be relieved only by their mothers' deaths. An implication of this study is the need for nurses to facilitate successful psychosocial interventions with daughters' loss and grief experienced during their role in the transition process with their mothers from home to nursing home.     

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.     

Home care nursing in Japan: a challenge for providing good care at home

Home care in Japan has developed over the past 30 years. Nurses have taken leadership in promoting home care and at the same time have expanded their roles. The roles of Japanese nurses in the field of home care are presented in the context of the historical perspective and view for the future. Home care nurses have performed care management for their community as well as for individual older clients living in their community. Currently, nurses work as high-tech and personal care providers and are developing a new role in health care enterprises. The number of nurses working as clinical nurse specialists will increase consistently with the rapid increase of master's programs. In the future, nurses should take a lead in developing health policy. The purpose of the article is to describe the current situation of home care clients and home care nursing in Japan. In addition, four issues of home care in Japan are described related to home care for older persons, high-tech home care, terminal care, and home care for psychiatric patients.     

Determinants of Home Care Nursing Hours for Technology-Assisted Children

In the 1980s home care, in contrast to hospital care, was reported substantially to reduce costs for third-party payers who provided funding for technology-assisted children. Savings were realized primarily because parents substituted for nurses, eliminating or reducing those costs. Third-party payers' savings thus were directly related to the number of hours parents assumed care. Because home care relies on parents doing some of the work of nurses, decisions regarding nursing hours must consider family factors in addition to medical factors. We evaluated the number of nursing hours 31 Minnesota families with technology-assisted children received, as well as the factors that determined the allotment of nursing hours. Most families (96.8%) received some hours of nursing hours. Most families (96.8%) received some hours of professional nursing care per day, and 16.1% received 24-hour care. Multiple regression, however, showed that family factors, rather than the child's medical condition, influenced the number of hours, with married, lower-income families with a younger child receiving the fewest. Further discussion and study are recommended to understand more fully the impact family factors have on the allotment of nursing hours and home care costs.     

Caring for parents of hospitalized children: a hidden area of nursing work

Children are the recognized patients when admitted to hospital but their parents can also present demands for care by nurses. Involvement in care can be stressful for parents, particularly when children are required to undergo unpleasant procedures. Parents turn to their families for support in the first instance but some also look for care from nurses. Consequently parents can present a need for care of themselves to nurses whose primary patients are children. In this paper the experiences of a group of parents who became co-clients of nurses are considered along with the views of nurses working on the same ward. The discussion arises out of a larger study of the experiences of the parents of children admitted to a surgical ward in a children's hospital. The principal purpose of the study was to examine parents' and nurses' perceptions of their participation in the care of hospitalized children. The work of caring for parents is found to be ad hoc and unpredictable. The implications of the study for practice and policy are considered.     

The institution enters the family home: home visits in Sweden to new parents by the child health care nurse

The purpose of this study is to investigate interactional patterns in the dialogue that occurs during home visits of the nurse to new parents, to find out whether there are similarities between home visits and visits to the child health care centers, and to discuss this in relation to what is emphasized as important in home visits. Audiotaped conversations of encounters during 5 home visits to new parents and interviews with parents and nurses were collected and analyzed qualitatively. Results show that the interactions were orchestrated by the nurse, and operated on an agenda that was task-oriented. The interaction was dominated by the nurse, and thus was asymmetrical. It seemed that the nurse was attentive to what the parents brought up in the discussions and responded to their worries very thoroughly, in accordance with the ideology. However, sometimes the parents were not even involved in the nurse's activities.     

Parent-nurse interactions: care of hospitalized children

BACKGROUND: An essential component of quality nursing care is nurses' ability to work with parents in the hospital care of their children. However, changes in the health care environment have presented nurses with many new challenges, including meeting family-centred care expectations. AIM OF THE PAPER: To report a research study examining the experiences of parents who interacted with nurses in a hospital setting regarding the care of their children. METHODS: A qualitative approach was employed for this study. In-depth audiotaped interviews were conducted with eight parents representing seven families. Data collection was completed over a 7-month period in 2001. FINDINGS: Parents characterized their experiences with nurses caring for their children as interactions, and identified the elements of establishing rapport and sharing children's care as key to a positive perception of the interactions. These elements were influenced by parental expectations of nurses. Changes in nurses' approach were reported by parents as the children's conditions changed. CONCLUSION: Nurses were able to work with families in the hospital care of their children in ways that parents perceived as positive. However, in parents' views, their interactions with nurses did not constitute collaborative relationships. A deeper understanding of these interactions may provoke new thinking about how to promote an agency's philosophy, and how nurses enact this philosophy in practice.     

Helping Children of Aged Parents Achieve Filial Maturity

Clinical nurse specialists working for a county nursing home made preadmission home visits as one of their functions to determine individuals in need of placement. The elderly were prioritized with the use of a rating scale according to their need for 24-hour nursing care. These home visits helped to identify certain problems in the aged. It was evident that the identification and possible resolution of some of these problems depended on the accomplishment of the developmental task of filial maturity on the part of the children, or on the children understanding that they can no longer depend on their parents but, rather, that their parents may need them (Blenkner, 1965). This article suggests that nurses working in the community should assess the elderly's middle-aged children for their level of filial maturity. It is also suggested that the accomplishment of this developmental task can clearly help families identify the appropriateness of nursing home placement or life in the community with support from area resources.     

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.     

Development of parent–nurse relationships in neonatal intensive care units – from closeness to detachment

Title. Development of parent–nurse relationships in neonatal intensive care units – from closeness to detachment Aim. This paper is a report of a study to explore the development of relationships between parents and nurses in a neonatal intensive care unit. Background. As increasingly smaller premature babies survive, the prolonged hospitalization that follows makes relationships between parents and nurses crucial. A collaborative partnership in which all the family members’ needs are acknowledged is suggested as the best approach. Method. A hermeneutic approach was adopted, using overt participant observation (160 hours) and in‐depth interviews to study interactions between parents and nurses. The participants were six mothers, six fathers, and six nurses from a 13‐bed Norwegian neonatal intensive care unit. Data were obtained over 27 weeks from 2003 until 2004. Findings. A partnership between parents and nurses developed in three phases: the acute critical phase, the stabilizing phase, and the discharge phase. The stabilizing phase seemed the most challenging. As exhausted parents expressed the importance of maintaining the trusting relationship with their primary nurses to become confident when assuming more responsibility and adjusting to the new situation, nurses purposely withdrew and reduced their contact with parents, facilitating their independence and confidence as caretakers. Parents and nurses rarely seemed to discuss with each other the discrepancy in their understanding of the detachment process. Conclusion. Acknowledging the need for parents and nurses to discuss the processes of involvement and detachment may contribute positively to the development of family‐centred care in neonatal intensive care units.     

Home‐care nurses’ distinctive work: A discourse analysis of what takes precedence in changing healthcare services

Ongoing changes in many Western countries have resulted in more healthcare services being transferred to municipalities and taking place in patients’ homes. This greatly impacts nurses’ work in home care, making their work increasingly diverse and demanding. In this study, we explore home‐care nursing through a critical discourse analysis of focus group interviews with home‐care nurses. Drawing on insights from positioning theory, we discuss the content and delineation of their work and the interweaving of contextual changes. Nurses hold a crucial position in home healthcare, particularly in ensuring care for sicker patients with complex needs. Assessing health needs, performing advanced care, and at the same time, providing customized solutions in various homes were identified as distinctive for home‐care nurses’ work. Changes have made nurses’ work become driven by comprehensive tasks and acute medical needs that require much of their competence and time. Urgent care seems to take precedence in nurses’ work, leaving less time and attention for other tasks such as conversations and support for coping with everyday life. This underlines the need to investigate and discuss the content and scope of nurses’ work to help shape the further development of home‐care nursing.     

Parent involvement in children''s pain care: views of parents and nurses

AIM OF THE STUDY: This study investigated the views of parents and nurses about the involvement of parents in the management of their child's pain during the first 48 hours after surgery. BACKGROUND: Children's pain management has been found to be problematic and in need of improvement. Nurses are the key health care professionals with responsibility for managing children's pain. Parents can make important contributions to assessment and management of their child's pain. METHODS: Using a phenomenological approach, nurses and parents were interviewed about their perceptions of parent involvement in pain management. FINDINGS: The findings indicated that parental involvement in their child's pain management is superficial and limited in nature. Parents described a passive role in relation to their child's pain care and conveyed feelings of frustration. Only a minority of parents expressed satisfaction with their child's pain care. Nurses perceived that there was adequate involvement of parents and adequate pain management for children. CONCLUSIONS: These findings may be somewhat explained by differing views and a lack of effective communication between parents and nurses. There is a clear need for nurses to discuss parent involvement with parents and negotiate roles in relation to pain management.     

Nurses as moral practitioners encountering parents in neonatal intensive care units

Historically, the care of hospitalized children has evolved from being performed in isolation from parents to a situation where the parents and the child are regarded as a unit, and parents and nurses as equal partners in the child's care. Parents are totally dependent on professionals' knowledge and expertise, while nurses are dependent on the children's emotional connection with their parents in order to provide optimal care. Even when interdependency exists, nurses as professionals hold the power to decide whether and to what extent parents should be involved in their child's care. This article focuses on nurses' responsibility to act ethically and reflectively in a collaborative partnership with parents. To illuminate the issue of nurses as moral practitioners, we present an observation of contemporary child care, and discuss it from the perspective of the Danish moral philosopher KE L?gstrup and his book The ethical demand.     

Evaluating the needs of children with asthma in home care: the vital role of nurses as caregivers and educators

To date, few evaluations have examined issues specific to children's asthma management in their homes. This study examined the characteristics, risk factors, and needs of children with asthma, and the impact of home health nurses on improving parents'/family caregivers' knowledge about asthma triggers and management. The medical records of children, 相似文献