Creating a context of safety and achievement at school for children who are medically fragile/technology dependent

Parents, nurses, and educators collaborate closely to create school environments that are safe and productive for children who are medically fragile/technology dependent. This article reports the results of a field study conducted in schools and family homes with the significant adults who care for and facilitate school participation for children who are medically fragile/technology dependent. Key steps in this process included learning about rights and responsibilities, planning for children's individual needs, being persistent in the face of systemic barriers, and taking actions to protect both children and professionals from perceived threats.     

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.     

Theoretical perspective: resilience in medically fragile adolescents

Medically fragile adolescents require medical technology and skilled care from parents and nurses in daily life. These adolescents may be ventilator dependent, require intravenous nutrition or medications, depend on nutritional or respiratory support, and depend on nursing care or other medical devices for daily living. Much of the extant research on medically fragile children and adolescents has lacked an overarching theoretical perspective. Findings suggest that peer relationships, family support, technology dependence, school attendance, and self-esteem are concepts of relevance for these adolescents. Thus, a theoretical framework derived from the risk and resilience literature was developed to identify the nature of their interrelationships using theory derivation techniques. The resilience in medically fragile adolescents framework was derived using concepts described by these adolescents. Further study is needed to test this model in medically fragile adolescents with hopes to foster positive outcomes for these adolescents.     

Caregiving stress, immune function, and health: implications for research with parents of medically fragile children

Caregiving stress has been associated with considerable demands imposed on parents responsible for the physical and emotional care of medically fragile children. With health care advances in medicine and technology, there are a growing number of children with chronic conditions and disabilities (i.e., the medically fragile) surviving longer and being cared for almost exclusively in the home by parents. The physical strains, financial constraints, emotional effects, and social isolation experienced by parents caring for children with such complex medical needs may ultimately impact their physical and emotional health. Stress associated with the caregiving of older adults has been shown to negatively impact on health and immune functioning with the potential for associated morbidity. Studies exploring the relationship of stress with biological markers of immune functioning in parents have not been widely conducted. Therefore, there is a great opportunity in parent-child health for researchers to investigate implications of stress on immune functioning and health outcomes in parents caring for medically fragile children at home. The purpose of this review article will be to provide an overview of the literature related to caregiving stress and immune functioning and to discuss implications for research in this area with parents of medically fragile children.     

Social interactions at school of children who are medically fragile and developmentally delayed

The social interactions (n = 576) of 11 children who were medically fragile and developmentally delayed (MF/DD) were analyzed. Children interacted with a range of 5-23 people (M = 13.82) during the course of a school day, averaging 52 social encounters (range, 27-75). Most interactions (83.5%) were with adults and often occurred while the adults were providing care and teaching. Only 4.2% of social encounters were initiated solely for play, and 7.2% included play with another activity. Network members initiated most interactions, and 60% were reciprocal. Children who are MF/DD require assistance and support to play and interact with other children.     

Facilitating transformation through collaboration

The philosophical underpinnings of transformative education were utilized to redesign a course taught to special education majors and nursing students at a rural southeastern university. The main goal when restructuring the class was to develop a course that would encourage communication and collaboration between education and nursing majors within the school community. The current course, "Health Care Perspectives of Exceptional Students," focuses on specific health care topics, with nurse faculty presenting the health care aspects and education faculty discussing educational implications for the classroom teacher. Every class includes dialogue and activities that require interaction. The last two classes are devoted to first-aid training and CPR certification. During the evaluation phase of the course, both education and nursing majors responded positively to the question of whether or not medically fragile children belong in the classroom. Furthermore, they saw the need for communication and collaboration between the classroom teacher and the school nurse as essential for effectively serving the medically fragile child in the school setting.     

Respite care services to caretakers of chronically ill children in California.

Caring for chronically ill and/or technology-dependent children at home can be emotionally, physically, psychologically, and financially exhausting for the caregiver. Caregivers require temporary relief from the burden of day-to-day care of these children. Respite care offers the opportunity for this relief. A study was conducted to survey the availability of respite care for chronically ill and technology-dependent children in California. Survey findings from 45 agencies indicated that 38% provided respite care for chronically ill and/or technology-dependent children. Fifty percent of agencies provided care for less than 10 chronically ill and/or technology-dependent children per year. Major problems associated with provision of respite services were inadequate reimbursement and insufficient request for services.     

Caring for medically fragile children in the home: an alternative theoretical approach

Medically fragile children require extensive, ongoing care that is typically provided in the home environment. The phenomenon of "caregiver burden" has been the topic of many studies in which the hardships and everyday life stressors of families with medically fragile children are examined. These studies are limited in that they focus merely on the difficulties of care, which represent only one dimension of the larger phenomenon of caregiving. It is the purpose of this article to review the literature from an alternative perspective in an attempt to provide a more thorough understanding of the dynamic of caregiving for a medically fragile child.     

Critical care nursing. Expanding roles and responsibilities within the community

The health care system in the United States is undergoing many changes, including the return of chronically dependent individuals who are medically fragile to the community's homes and schools. Community-based health care, when compared with hospital care, is more cost effective and is the consumer's preference. The supportive technology to perform skilled therapies is available and recent legislation, although not adequate, provides support. Not only is the community becoming an arena for the provision of more complex care, it is also becoming an arena for addressing ethical issues. The nursing profession is challenged to prepare skilled nurses for the greater independence that is required in community-based practice. Nurses need to become more aware of the authority inherent in their professional role in order to most effectively address and resolve the more complex and often intensive care needs of their clients who are medically fragile and being cared for in the community and to guide their families in the resolution of related ethical dilemmas.     

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.     

Stress in families with medically fragile children

The literature related to the stress experienced by families who care for medically fragile children is analyzed. A model is generated from themes identified in the research literature. Four core themes were identified under which most of the stressors identified in the literature could be grouped. These are role conflict, financial burden, care burden, and independence. These are in turn arranged as a matrix in which the family, the child, the care professional, and health care system interact dynamically with the four core themes. The Family Stress/Task Matrix has the potential for facilitating research related to models that include a family-centered view among health professional and systems.     

The search for social safety and comfort in families raising children with complex chronic conditions

Social consequences of raising children who were medically fragile and developmentally delayed (MF/DD) were explored in an ethnographic study of 20 families with school-age children. The overarching theme was the families' search for safety and comfort in social situations. Major categories comprising this theme included the need to anticipate and plan for the child's care; overcoming environmental, child-related, and attitudinal barriers; and finding social activities that were comfortable for all members of the family. When this search was successful, families could relax, and all members could participate in a variety of social encounters and activities; but when safety and comfort could not be achieved, families were likely to limit social activities or split the family so that the child who was MF/DD could be cared for while other family members participated in social events.     

Establishment of a state-supported, specialized home care program for children with complex health-care needs.

Establishment of a systematic approach to home care for children who require complex, technology-dependent care requires a well-thought-out process of collaboration and planning between all parties involved--the family, the professional, and the hospital. The State of Michigan Department of Public Health elected to assist families in taking their children home through a Specialized Home Care Program funded by combined sources that emphasized child care needs first rather than cost savings. This review identifies the development of roles, processes and products, and methods to enhance the discharge planning and home care processes. These processes indicate the need for parent involvement and teamwork with health-care professionals. Refinement of the program is suggested as well as further development of an evaluation component and family assessment tools.     

Nurse-parent dialogue: illuminating the evolving pattern of families with children who are medically fragile

Guided by Newman's theory of health as expanding consciousness, this study explored the pattern of nurse-parent interaction in families with children who were medically fragile by applying the hermeneutic, dialectic method of interviewing and analysis. Living with children who are medically fragile was manifested by continual uncertainity. Families changed from trying to gain control of their uncertainty to learning to live in the uncertainty, as they evolved through an initial p[eriod of disruption and disorganization to organization at another level. This required new ways of relating to friends, family, healthcare providers, and the community, expanding the consciousness of the family.     

Nursing, food service, and the child with diabetes.

The safety and well-being of children while they are at school or day care is a major concern in our society. It is therefore important that the professionals who are entrusted with the care of young people possess the knowledge and skills necessary to provide a safe and caring environment for all children, including those with chronic disorders such as diabetes. Each day 35 children in the United States are diagnosed with diabetes mellitus. To make their school experiences positive, it is imperative that school employees be aware of the potential challenges associated with diabetes and how to meet these challenges successfully. This article discusses the role of the school nurse in forming an interdisciplinary team to work with a child with diabetes. It addresses the school nurse's role in diabetes education of food service personnel in the school. Confidentiality issues are also addressed.     

A pilot study using electronic communication in home healthcare: implications on parental well-being and satisfaction caring for medically fragile children

The aim of this study was to explore the impact of a nurse-established and nurse-managed electronic communication in the form of e-mail on the self-reported well-being and satisfaction of parent's caring for medically fragile and technologically dependent children. This study was conducted in a pediatric home care agency located in the southeastern region of the United States. Nineteen parents and caregivers participated in a 3-month intervention. A quasiexperimental pre- and posttest design was used. There were no significant differences in pre- and postintervention parental self-reported well-being (p < .227) or satisfaction (p < .528). Parental qualitative comments suggest positive outcomes related to well-being and satisfaction. Further investigation into the utility of e-mail communication with parents of medically fragile and technologically dependent children cared for at home is warranted.     

School nurses' experiences, concerns, and knowledge of growth disorders in children: development of a monograph.

Growth disorders may be associated with difficult psychosocial adjustment, learning problems, and specific health risks. Appropriate school health programming relies on school nurses who are skilled in growth assessment, management of psychosocial and behavioral problems, and effective communication with school personnel, children, families, and health care resources. A monograph and model individualized healthcare plans were developed for growth disorders in school-age children as an educational resource for school nurses. Knowledge of growth disorders among nurses receiving the monograph was evaluated in a random sample of 336 school nurses, members of the National Association of School Nurses. Knowledge of growth assessment and individualized health care plans for children with specific growth disorders was significantly higher in the group of school nurses who received the monograph. Specific obstacles to implementing school-based health care for children with growth disorders are discussed.     

Voicing the strengths of Pacific Island parent caregivers of children who are medically fragile.

Research is deficient regarding the strengths of Pacific Island parents of children who are medically fragile. The purpose of this qualitative ethnographic study was to explore the strengths of Pacific Island parents of these children. Audiotaped interviews were analyzed using Text Smart and peer review. The core theme reflecting strength was positive energy. Participants believed that parents needed to have the ability to handle emotional feelings, solve problems, connect with their spirituality, find meaning, take care of themselves, use family support, use community support, use a positive attitude, be resourceful, meet a challenge, interact with nature, and focus on the present. Themes were affirmed by the literature with the exception of interacting with nature, which may be indigenous to the population's cultural orientation.     

Resourcefulness training intervention: A promising approach to improve mental health of mothers with technology-dependent children

The population of children dependent on medical technology such as mechanical ventilation, feeding tubes, and supplemental oxygen continues to grow in the United States. These children are frequently cared for by their mothers at home following hospital discharge. Research indicates that these mothers are at high risk for negative mental health outcomes that affect both caregiver and care recipient. The purpose of this randomized controlled pilot trial was to determine the feasibility, acceptability, and efficacy of resourcefulness training (RT), a cognitive–behavioral intervention, among mothers of technology-dependent children. RT was found to be a feasible and acceptable intervention with this population during the 6 week study. The effect size in this pilot study demonstrates initial efficacy and indicates areas for strengthening the intervention protocol. RT is a promising intervention that can be employed by pediatric nurses to assist mothers in the home management of technology-dependent children.