Functional status, personal health, and self-esteem of caregivers of children in a body cast: a pilot study

BACKGROUND: There is a lack of literature describing the changes in daily routine that parents caring for a child in a body cast must experience. The investigator's clinical experience suggested that determining these changes in parental daily routine would inform nurses of appropriate interventions for these parents. PURPOSE: This Roy Adaptation Model-based pilot study was designed to examine the relation of personal health and self-esteem to functional status of caregivers of children in a body cast. Functional status was defined as performance of household activities, social and community activities, care of the child in the body cast activities, care of other children activities, personal care activities, and occupational activities. METHODS: Data was collected from 16 caregivers of children in body casts, birth to up to 3 years of age, and 14 caregivers of children in body casts, 3 to 12 years of age. RESULTS: The results of the study suggested that parents of children in body casts undergo many changes in their daily activities. Parents of children ages 3-12 years had more changes than parents of children ages birth to 3 years. The study findings suggest that a larger sample may yield some statistically significant results.     

Living with disability: Part 3. Communication and care

This is the final article in a series of three that have highlighted the complexities of caring for a child with a disability. The first article gave an overview of commonly used terminology, receiving the news that your child has a disability, impact on family members caring for a child with a disability and relevant social policy. The second article discussed the importance of therapeutic use of self and the use of reflective practice when caring for children with disabilities and their families. Part three addresses the range of care that a child with disabilities requires and how the child's needs can be met in the ward setting. The importance of multi-disciplinary working in providing holistic care is also considered.     

Caring for a child with cystic fibrosis: the children's nurse's role

This article presents a narrative literature review of the psychosocial impact on family life of caring for a child diagnosed with cystic fibrosis. Diagnosis of long-term illness in a child causes major upheaval in the lives of both the child and family. Normal family life is often emotionally, socially, physically and financially disrupted. Amid such disruption, parents attempt to cope by creating a semblance of order in their lifestyle. Within an interdisciplinary approach to caring, the children's nurse plays a pivotal role in supporting families to establish such order and reconstruct their lives, while coming to terms with the knowledge that their child could die prematurely. In addition, the nurse, in his/her role as teacher and educator, empowers parents, children and young people with the knowledge to make informed decisions and assists parents in developing the skills (often technical) to care for their child. Cystic fibrosis is one such condition in childhood, and this article explores the main psychosocial issues experienced by families caring for their child following diagnosis of CF, as raised in the literature.     

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.     

Child Care Health Consultation: An Ecological Model

ISSUES AND PURPOSE. To present an ecological model of child care health consultation that defines the role of the health consultant as a resource and advocate within child care programs, as well as a supportive link among families, child care providers, and the healthcare system.
CONCLUSIONS. Nurses have provided health consultation to child care programs for more than 30 years and represent the majority of health consultants nationally. Pediatric nurses and advanced practice nurses are well prepared to shape and lead the development of this emerging role.
PRACTICE IMPLICATIONS. With expertise in caring for children, understanding families, and care across systems, pediatric nurses and advanced practice nurses should engage in current state and national efforts to develop child care health consultatits.     

Adapting the family management style framework for families caring for older adults with dementia

This article presents an adaptation of the Family Management Style Framework (FMSF)-a well-established framework of family response to chronic condition care of children-to families caring for older adults with dementia. Using the FMSF to better understand how families manage dementia care can provide clinicians with insights on how to work effectively with families. Using data from interviews with eight female caregivers of older adults with dementia, this secondary analysis adapts the FMSF, and identifies new dimensions that apply specifically to families caring for older adults with dementia. The discussion draws comparisons between the family management of a child with chronic condition to management of an older adult with dementia. The article concludes with a discussion of how understanding how families manage care of an older adult with dementia informs assessment for management styles and the tailoring of interventions specific to family, caregiver, and older adult needs.     

Research Article: Empowerment process for families rearing children with developmental disorders in Japan

The understanding of developmental disorders and the support that is offered to families rearing a child with developmental disorders always have been limited in Japan. To clarify the empowerment process for families rearing a child with developmental disorders, we interviewed 20 mothers of children who lived in the wider Tokyo area, Japan. To analyze the data, we adopted the modified grounded theory approach. The results identified three stages in the empowerment process: confusion over caring for the child, confrontation with the child with the disorder, and expectations of a valuable life for the child. The empowerment process showed step‐by‐step progress: families that were originally ill‐equipped to deal with their child's disorders were able to deal with them in collaboration with professionals through approaching the local administration and were able to shift their stance on child‐rearing along with their child's growth. To promote the family empowerment process, cross‐jurisdictional and cross‐occupational collaboration among local care teams is needed. The members of the teams should understand the experiences and feelings of the families that are rearing children with developmental disorders in the context of the family's empowerment process.     

Using the resiliency model to deliver culturally sensitive care to Chinese families

In 1998, 4% of U.S. children were Asian/Pacific Islander; of these, 23% were Chinese. The incidence of infants with congenital heart defects (CHD) in Chinese children approximates that of Caucasian children in the United States. Parents of children with CHD are faced with caring for the children at home after surgery. Parents' roles and responsibilities expand significantly as their children return home with complex care needs. In pediatric nursing, we not only take care of the individual child but also the family as a whole. The family is the primary institution in society that preserves and transmits culture. Understanding Chinese culture and its association with health care practice helps nurses to establish culturally sensitive nursing interventions; develop appropriate discharge plans; decrease family stress; reduce future medical hospitalization costs; increase positive coping, adaptation, and family function; and improve health outcomes of the child and the family. The Resiliency Model was used to examine its applicability in caring for Chinese families in this paper.     

Lower extremity orthoses in children with spastic quadriplegic cerebral palsy: implications for nurses, parents, and caregivers

Understanding trends in the prevalence of children with cerebral palsy is vital to evaluating and estimating supportive services for children, families, and caregivers. The majority of children with cerebral palsy require lower extremity orthoses to stabilize their muscles. The pediatric nurse needs a special body of knowledge to accurately assess, apply, manage, teach, and evaluate the use of lower extremity orthoses typically prescribed for this vulnerable population. Inherent in caring for these children is the need to teach the child, the family, and significant others the proper application and care of the orthoses used in hospital and community settings. Nursing literature review does not provide a basis for evidence in designing and teaching orthopaedic care for children with orthoses. A protocol for orthoses management has been developed to assist caregivers to accurately care for children with lower extremity orthotic devices.     

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.     

Nurses'' experiences of caring for culturally and linguistically diverse families when their child dies

Nurses experience the care of a dying child and their family as a challenging but distressing event. In a paediatric intensive care unit (PICU), Melbourne, Australia, nurses expressed a concern that they may not be providing the most appropriate care when a cultural disparity exists between nurses and families experiencing the death of their child. A critically informed study was undertaken with six PICU nurses to explore their experiences of caring for a culturally and linguistically diverse family whose child had died. Three consecutive focus group interviews were conducted with the nurses to identify issues in this area of their nursing practice and to contemplate how their practice might be changed. The focus of this paper is on one particular finding of the study about the nurses' use of controlling practices to ensure families conformed to the established routines and values of the PICU staff.     

Families in crisis: making the critical difference

As nurses, we are educated to care for the whole patient, to provide care for the body, mind, and spirit, and to improve the quality of life. When a patient has a crisis, his or her family is propelled into the crisis as well. Although critical care nurses have always participated in a caring manner by interacting with families of critically ill patients, nurses must be encouraged to actively seek ways in which to help these families. This article has provided guidelines and strategies for caring for families in crisis. The most effective way to care for family members in crisis is by demonstrating a conscientious concern for their loved one, that is, the patient. The knowledge that our nursing actions make a difference in the lives of family members gives us renewed insight into maintaining the care in critical care nursing.     

Reflecting on practice in children's palliative care

Palliative care nursing practice can be enhanced if the clinical judgements made in applying palliative care philosophy to individual situations are critically examined and challenged. A model of reflection developed specifically for children's palliative care practice is illustrated here using a critical incident in which the parents of a child with complex disabilities were helped to reduce their caring role and accept increased support. As a result of the structured reflection, the importance of assessing for signs of stress in parents and the wider family was recognised. Additionally, the need for more research specific to the needs of families with more than one child with life-limiting illness was identified as a mechanism for improving the quality of care delivered.     

Functioning of child maltreating families: lack of resources for caring within the family

The purpose of this study was to develop a preliminary theoretical model of functioning of child maltreating families. Child maltreatment was defined as physical, psychological or sexual abuse or neglect caused by the child's primary caregivers. The aim was to generate knowledge needed in developing understanding and the care of these families. Data were collected using interviews with open-ended questions from child maltreating families (n = 20). Transcribed interviews were analysed by using grounded theory and its constant comparative method. The categories of family functioning included structural factors of the family, relationships between family members, relationships outside the family, family strengths, and risk factors and manifestations of maltreatment. The relationships that emerged between these categories included conflicts and negative circles of family life and the effects of child maltreatment on the family. Lack of resources for caring within the family emerged as the core category which described the phenomenon in general and was connected to all other categories of family functioning. The findings can be useful in developing the care of child maltreating families, in nursing education and in preventing child maltreatment.     

THE CHALLENGE OF PROVIDING CONTINUITY IN THE CARE OF A DISABLED CHILD: SMITH-LEMLI-OPITZ SYNDROME

The health of a disabled child can be adversely affected if parents and health care providers are not informed regarding the need for ongoing care and consultation. This case illustrates the ways in which failure to obtain appropriate consultation and breakdown in communication between parents, health care providers, and community agencies negatively impacted the health of a young child with Smith-Lemli-Opitz Syndrome (SLOS). Although the disorder was detected in the child, information regarding treatment was not communicated to those caring for the child, resulting in serious and potentially life-threatening consequences. In this case study, we review the pathophysiology of SLOS, the positive impact of making use of expert consultation, and the complexities of navigating multiple systems when advocating for a child with a serious developmental disorder. The role of nursing in facilitating collaboration among families, members of the health care team, and advocacy agencies, particularly in children with complex medical and psychiatric difficulties, is highlighted.     

Family violence: walking the tight rope between maternal alienation and child safety

Mothers are often alienated from their children when child abuse is suspected or confirmed, whether she is the primary abuser of the child or not. An abusive or violent partner often initiates the process of maternal alienation from children as a control mechanism. When the co-occurrence of maternal and child abuse is not recognised, nurses and health professionals risk further alienating a mother from her child/ren, which can have detrimental effects in both the short and long term. Evidence shows that when mothers are supported and have the necessary resources there is a reduction in the violence and abuse she and her children experience; this occurs even in situations where the mother is the primary abuser of her children. The family-centred care philosophy, which is widely accepted as the best approach to nursing care for children and their families, creates tension for nurses caring for children who are the victims of abuse as this care generally occurs away from the context of the family. This fragmented approach to caring for abused children can inadvertently undermine the mother-child relationship and further contribute to maternal alienation. This paper discusses the complexity of family violence for nurses negotiating the 'tight rope' between the prime concern for the safety of children and further contributing to maternal alienation, within a New Zealand context. The premise that restoration of the mother-child relationship is paramount for the long-term wellbeing of both the child/ren and the mother provides the basis for discussing implications for nursing practice.     

The challenge of providing continuity in the care of a disabled child: Smith-Lemli-Opitz syndrome

The health of a disabled child can be adversely affected if parents and health care providers are not informed regarding the need for ongoing care and consultation. This case illustrates the ways in which failure to obtain appropriate consultation and breakdown in communication between parents, health care providers, and community agencies negatively impacted the health of a young child with Smith-Lemli-Opitz Syndrome (SLOS). Although the disorder was detected in the child, information regarding treatment was not communicated to those caring for the child, resulting in serious and potentially life-threatening consequences. In this case study, we review the pathophysiology of SLOS, the positive impact of making use of expert consultation, and the complexities of navigating multiple systems when advocating for a child with a serious developmental disorder. The role of nursing in facilitating collaboration among families, members of the health care team, and advocacy agencies, particularly in children with complex medical and psychiatric difficulties, is highlighted.     

Creating a child abuse policy that reflects an ethic of care

The primary purpose of child abuse policy is to guide the action of health care providers and so ensure that the fundamental rights of those the policy intended to protect are not compromised. This discussion paper explores the ethical considerations underlying child abuse policy from bioethical and from caring ethical perspectives, both of which are outlined briefly. A process that could be used to create or analyse existing child abuse policy, in relation to underlying ethical considerations, definitions of child abuse, level of health care, resourcing needs and relationship to employment policy is outlined. A hypothetical example of such a policy is used to illustrate elements of this process. Assuming that policy is designed to direct action, it is argued that if child abuse policies were rewritten to reflect an ethic of care the quality and scope of health care provided to children and their families would improve. Consequently, stated government objectives of improving child health services, as well as primary health care aims of achieving equitable, accessible and affordable health care for children in New Zealand would be better facilitated.