Transition from hospital to home for children with complex medical care

Home care has become a well-accepted option for children with chronic illnesses, such as cancer, who require continued technological care for survival. Components of successful home care include assessment of the child and family for this option, assessment of the community's ability to provide the services the family needs, development of a comprehensive care plan, education of care givers, and ongoing evaluation of the plan. Nurses play a major role in the discharge planning for home care by educating care givers to perform the necessary care, by providing opportunities for care givers to demonstrate competence before assuming total responsibility, and by ensuring that the care givers and the home environment are ready for the child's discharge. Throughout this process, the principles of normalization are applied to provide the child with an optimun home environment. Establishing parent-professional partnerships is crucial to providing family support that empowers family members, especially parents, to assume the responsibilities of caring for their child.     

Respite support for children with a life-limiting condition and their parents: a literature review

Most children with a life-limiting condition are cared for in the family home by their parents, who require professional support to provide this care. Owing to advances in medicine and medical technology these children are living longer and, given the often relentless and all-encompassing nature of caring for children with life-limiting conditions, respite (facilitation of short breaks) is considered central to quality palliative care provision for children and their families. However, there is still ambiguity in exactly what is meant by the term 'respite', what constitutes respite care, whether the services currently provided meet the needs of the child and family, and how respite is best provided. This paper reviews the literature relating to respite as a component of children's palliative care. Themes from the literature are identified and discussed. Challenges for the providers of respite care are identified and suggestions made regarding the future development of responsive and family-focused respite care.     

Discharge planning for children with heart disease

Almost all children with heart disease are successfully cared for at home by their parents. Pediatric cardiovascular nurses play a major role in preparing parents to meet their child's medical needs, in aiding families to cope with a chronic condition, and in encouraging normal growth and development for their young patients. Through assessment, collaboration with other members of the health care team, planning with the family, teaching, counseling and supportive interventions, and evaluating care, nurses assist in a smooth transition to home and appropriate use of community resources.     

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)     

Mental health of mothers caring for ventilator-assisted children at home

The complex management of ventilator-assisted children cared for in the home can place emotional and mental strain on parents, in particular, mothers. The purpose of this study was to explore the relationships among functional status of the child, impact of ventilator-assistance on the family, coping, social support, and depression in mothers caring for ventilator-assisted children at home. Thirty-eight mothers participated in the study. Almost half of the mothers experienced depressive mood symptoms. Impact on family was positively related to depression and social support was inversely related to depression. In addition, social support was a significant predictor of depression. The findings show that the high demands related to the care of ventilator-assisted children can be a significant risk factor for poor mental health outcomes of those mothers providing care at home. Interventions by mental health and pediatric nurses should focus on enhancing mothers' coping skills and assisting mothers in accessing a positive social network to help mediate the stress related to caring for their child.     

MENTAL HEALTH OF MOTHERS CARING FOR VENTILATOR-ASSISTED CHILDREN AT HOME

The complex management of ventilator-assisted children cared for in the home can place emotional and mental strain on parents, in particular, mothers. The purpose of this study was to explore the relationships among functional status of the child, impact of ventilator-assistance on the family, coping, social support, and depression in mothers caring for ventilator-assisted children at home. Thirty-eight mothers participated in the study. Almost half of the mothers experienced depressive mood symptoms. Impact on family was positively related to depression and social support was inversely related to depression. In addition, social support was a significant predictor of depression. The findings show that the high demands related to the care of ventilator-assisted children can be a significant risk factor for poor mental health outcomes of those mothers providing care at home. Interventions by mental health and pediatric nurses should focus on enhancing mothers' coping skills and assisting mothers in accessing a positive social network to help mediate the stress related to caring for their child.     

Maximizing services along the continuum of care from inpatient to home

The nurse managers of the inpatient pediatric units and home care division of Robert Wood Johnson University Hospital met to restructure and optimize the quality of care delivered to children and their families in the home setting. A program was developed using inpatient pediatric staff nurses to perform home visits to children requiring follow-up after an inpatient hospital stay. The nurse managers found home visits could comfortably be delivered by pediatric inpatient nurses if they were appropriately oriented and precepted by experienced home care nurses. When home visits were performed by the nurses who cared for the patient in the hospital, both the child and the family appeared to have an increase in comfort and self-confidence in caring for their child. The program also was successful in reducing the costs associated with pediatric home care. This was achieved by facilitating the downsizing of the inpatient units in periods of low census, as well as in cost avoidance associated with not paying benefits to additional employees that otherwise would have been hired by the home care department. This program could be implemented successfully in institutions that support communication, coordination, and continuous improvement of the programs provided to children and families.     

Important aspects of care and assistance for children 0–7 years of age being treated for cancer

Aspects of care and assistance that are important for children aged 0-7 years who are being treated for cancer were examined. Parents ( N=57) and nurses ( N=59) were asked: "What caring aspects are important in ensuring that your child/the child feels cared for?" and "What help, if any, does your child/the child need outside the hospital?". Data were analysed by content analysis. The following aspects of care were identified: amusement, clinical competence, continuity, emotional support, family participation, honest communication, information, participation in decision making, satisfaction of basic needs, social competence, the parents are well cared for, and time. Parents most frequently mentioned social competence and amusement, while nurses most frequently mentioned continuity and information. The following aspects of assistance were identified: accessible care, amusement, emotional support, family life, meeting friends, normal life, practical support, rehabilitation and school support. At least a third of the children did not need any assistance, according to parents and nurses. Parents most frequently mentioned family life, meeting friends and practical support. Nurses most frequently mentioned normal life and family life. Taken together, the results indicate that not only a family but many more people need to be involved to help children with cancer to be cured not only in a biological but also a psychosocial sense.     

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.     

Managing chronic illness: parents with a ventilator--dependent child

Ventilator-dependent children are surviving longer and increasing in number. This qualitative study was undertaken to describe the impact of a ventilator-dependent child on 10 families and to describe the management styles used by the parents. In five families, the child remained hospitalized due to the disability while in the other five the child primarily lived at home. Three major themes in managing were elicited: barriers, resources, and parenting. Parents believed they should try to normalize their child's experiences, that interactions with health care professionals required negotiation and assertiveness, and that they needed some support person(s) outside of the family.     

Health care policy for medically fragile children

Medically fragile children are part of a growing population of children with special health care needs (CSHCN) who are dependent on technology for survival. Despite the extensive care needs characteristic of this population, many medically fragile children are cared for in their homes. Caregivers for these children are faced with numerous tasks, including the daily care of their child as well as the coordination of vital services. Inadequate access to health care, little service availability, limited insurance, and financial restraints may further complicate caring for a medically fragile child in the home. Although federally funded programs such as Supplemental Security Income (SSI) and State Title V CSHCN programs may be beneficial for these children and their families, current policies may limit access to these necessary services. As patient advocates, nurses may be instrumental in assisting medically fragile children and their families to obtain much-needed programs and vital services.     

Sibling involvement at the end of life.

When a child is diagnosed with a life-threatening illness, such as cancer, there is much disruption to the family. It is a struggle for parents to divide their time between the hospital, home, and other healthy siblings. Nurses strive to provide family-centered care, which involves siblings in many stages of the treatment process. However, during the terminal phase of a child's disease, the dying child and the parents are often the sole focus of the health care team. Siblings are often left to stay with extended family members or friends so that they are protected from the reality of death. However, previous research has shown that even young children understand death, and some of the protective measures parents take actually hamper the siblings'bereavement process. Nurses are in a position to guide families through the emotional time of a child's death while advocating for sibling involvement at a level appropriate for their developmental stage.     

Acute illnesses in children: A description and analysis of the cumulative incidence proportion

Objectives - To describe parent-reported morbidity in relation to die psycho-social conditions of the families and to characterize families whose children are frequently ill.

Design - The parent-reported morbidity in a two-month prospective period, and the psychosocial conditions of the families were registered by means of a questionnaire. The conditioned probability of parents' reporting an episode of illness was estimated by means of logistic regression analysis, taking the psycho-social conditions into consideration.

Setting-18,949 families with at feast one child under the age of 8 years, resident in the County of Ringkøbing in western Denmark at 1 March 1988.

Subjects - An age-stratified random sample of 1982 families was entered in the study. 1588 (82%) families returned the questionnaire.

Results - The parents reported considerable morbidity in their children. The cumulative incidence proportion (CIP) for the period was 48%. The multivariate analysis of the parentreported morbidity led to the following main results: 1) the morbidity was greatest for children aged 6 to 18 months, after which it decreased with age, 2) there was interaction between the care conditions and the child's age - CIP for children up to two years was largest for the children who were cared for in daycare, while the CTP for the older children was largest for the children who were cared for at home, 3) if the parents reported that the child's siblings suffered from chronic or frequently recurring morbidity, the child's morbidity rate was significantly increased, 4) mothers with higher education reported more morbidity in their children than mothers without this education, and 5) parents with a high perception of the general health threat (»worried« parents) reported more morbidity than did parents with a low perception.

Conclusions - The results made it possible to characterize families whose children were frequently reported ill.     

Experiences of families in which a child has a prolonged terminal illness: modifying factors

A significant proportion of children requiring palliative care have neurodegenerative life-threatening illnesses (NLTIs). While most of their care is provided at home by their families over many years, there is a paucity of research examining families' experiences when a child with an NLTI is dying at home. In this grounded theory study, data were collected from eight families through observations and audiotaped interviews. Families moved through a process of 'navigating uncharted territory' as they lived with their dying child. The strategies that families used to manage this phenomenon were influenced by four intervening conditions that reflected the broader structural context of the phenomenon; relationships with healthcare providers, availability of information, gender differences, and communication between parents. Each condition facilitated or constrained the strategies that families were able to use. Implications for research, education and practice are discussed.     

The viability of pediatric hospices: A case study

This paper identifies the special characteristics needed by hospices caring for terminally ill children. It is based on a feasibility study conducted in 1979 for a pediatric hospital in New York City. From the analysis of statistical data and confidential interviews with health care professionals in the hospital and in the community, the study concludes that the needs of terminally HI children and their families are not being met currently and that the hospice is as appropriate for children as for adults. Three major differences in emphasis are noted, however. First, support of the family suffering the death of a child is of prime importance, because the grief is devastating and long lasting and because the number of family members affected is usually large. Second, the hospice emphasis on home care is even more imperative for children than for adults as it more significantly benefits both child and family; home care can be facilitated through supplementary care components such as day care. Third, there is a major need for both professional and public education in caring for terminally ill children and their families and in coping with childhood death. The author concludes that further research is needed in all aspects of pediatric terminal care.     

A life enriching togetherness--meanings of informal support when being a parent of a child with disability

The majority of children affected by disability are cared for at home by their parents. It is well documented in research literature that the parents are in need of professional support. In the striving to improve the professional caring, it is also important to deepen our understanding about the meaning of informal support from the perspective of parents' life world. The aim of this study was to illuminate the meanings of lived experience of informal support, when being a parent of a child affected by disability. Thirteen parents, eight mothers and five fathers within eight families, participated in narrative interviews, which were analysed by using a phenomenological-hermeneutic method. The meanings resulted in three themes: 'being gratified by experiences of the child as having a natural place in relation with others', 'being provided a room for sorrow and joy' and 'being enabled to live an eased and spontaneous daily life'. These themes emanated from the experiences of other persons' being and doing in relation to the parents, the child affected by disability and the siblings. According to our interpretation, informal support means a life enriching togetherness, the core of which is natural human caring. The findings also showed that parents highly valued professional support concerning informal supporters.     

Discharge management for children with complex needs

There is now an expectation that children with complex (often technology-dependent) care needs will be cared for at home by parents who assume 24-hour responsibility following extensive training to nurse, care for and parent their child. A variety of models of discharge planning exist but the planning and process of discharge are persistently reported to be problematic from the perspective of families, professionals and commissioners. A consultation exercise with both parents and professionals indicated that nurses, doctors and social workers would benefit from some practical help and specific knowledge relating to complex discharge management. This article summarises best practice and, where possible, evidence-based principles and procedures with the intention of contributing to the establishment of effective models of discharge management and ongoing homecare, and improved outcomes for children and families. Guidance on putting together and costing a care package proposal, and applying risk management and clinical governance procedures in home-based settings will be published in the June issue of Paediatric Nursing.     

Parental adaptation to a child with bronchopulmonary dysplasia

Across the country, there has been an increase in the use of technology for the care of smaller infants, resulting in a chronic lung disease: bronchopulmonary dysplasia (BPD). For many years, the management of BPD occurred entirely in the hospital. However, there has been an increased use of home care for these children. The resultant home needs of the child place a strain on the coping strategies of the parents. Through education, support, communication, and a coordinated plan of care, the nurse can help the family in the adaptation process.     

Behavior problems among young children in low‐income urban day care centers

The purposes of this study were to describe: (a) the frequency and correlates of behavior problems among a sample of 2‐ and 3‐year‐old children from low‐income families as seen by their parents and day care teachers, (b) the degree to which parents and teachers agree about the children's behavior problems in their respective contexts, and (c) family characteristics that distinguish toddlers with behavior problems both at home and at day care from the rest of the sample. Parents of 133 toddlers from 10 Chicago day care centers completed measures of child behavior problems, child behavioral intensity, parenting self‐efficacy, discipline strategies, and stress. Children's day care teachers also completed a measure of child behavior problems. Parent‐reported behavior problems were associated with higher child behavioral intensity, greater parent stress, lower self‐efficacy, and discipline strategies characterized by irritability, coercion, and inconsistency. Parent and teacher ratings on child behavior were correlated for boys' behavior problems only. Parents reported more child behavior problems than teachers. Approximately 8% of the children were rated as having behavior problems at home and at day care. Although most of the children are functioning well, many of these parents and toddlers are engaged in highly stressful and coercive relationships. © 1999 John Wiley & Sons, Inc. Res Nurs Health 22: 15–25, 1999.     

Supporting 'expert' parents--professional support and families caring for a child with complex health care needs in the community

In the United Kingdom a new group of children with intensive and complex health care needs are now being cared for at home as a result of medical advances and government policies emphasising the community as the arena for care. This has led their parents to become involved in providing care of a highly technical and intensive nature that would previously have been considered to be the domain of professionals. In-depth qualitative interviews were conducted with parents and professionals to discover parents' and professionals' experiences of receiving and providing support in a context where parents rather than professionals are the expert caregivers. This paper describes the elements of professional 'support' that were particularly valued by parents and concludes with a discussion of the implications for professional education and roles.