Children with a long-term illness: parents' experiences of care

A diagnosis of a long-term illness in a child will bring on a major upheaval in the lives of the whole family involved and leads to a long-standing relationship with health care personnel. The purpose of this study was to describe parents' experiences with their child's illness and treatment and with their relationships with health professionals during the process of learning to care for their child. Data were collected by conducting open-ended interviews with parents (N = 11) whose child had been diagnosed with a physical long-term illness at least 1 year previously and were analyzed using qualitative content analysis. Parents' needs for information and support varied and consisted of different components in different phases of the process. During the diagnostic phase, parents were recipients of information; it was important for them to receive consistent empathetically provided information. In the next phase, parents, having gained experience of day-to-day home care, engaged in a change toward a two-way flow of information with the professionals; mutual trust was essential for the exchange of information needed for a child's proper care. Without a permanent relationship with health professionals, parents showed lack of trust in professionals' knowledge of their child's condition and care. Professionals' lack of trust in parents' expertise in their child's care was also problematic. Health professionals should lay the groundwork for a partnership in which both parties acknowledge each other's competencies; parents' needs ought to be continuously reassessed. A permanent relationship between families and health care personnel is required to achieve this.     

Coping and social support of parents with a diabetic child

The purpose of this study is to describe and understand the parental coping and the social support received by the parents of diabetic children. The parental coping process was followed for a 4-week period after the diagnosis of diabetes. The parents of two girls, whose diabetes was diagnosed in early childhood, served as study subjects. Data were collected by interviewing and observing the parents over four separate periods. The data were analyzed by the time series and content analysis methods. Six phases of parental coping were identified: disbelief, lack of information and guilt, learning to care, normalization, uncertainty and reorganization. In the different phases of parental coping, the parents' experience of stress, coping strategies and sense of control varied. In the phase of disbelief, the parents tried to reject the child's diabetes by questioning the diagnosis. The initial information given to the parents regarding their child's diabetes proved to be important for parental coping. In the phase of lack of information and guilt, the parents sought reasons for their child's diabetes and felt guilty about it. As coping responses, the parents sought support from each other and from people who had experienced the same. In the learning to care phase, they recognized the demands caused by diabetes and took responsibility for the child's care. The parents appreciated supervision based on their problems. In the normalization phase, the parents prepared to return home with the diabetic child. Getting back to normal life was one of the most effective parental coping responses. In the uncertainty phase, the care to be given to the diabetic child changed the daily routines of the family. In the reorganization phase, the parents adapted to the diagnosis of diabetes and to the care of their diabetic child. The parents felt that the life of the family normalized and was able to be controlled.     

Parents' perceptions of children with chronic illness: a study of immigrant Chinese families

This article describes and discusses parents' perceptions of a children with a long-term health problems in 16 Chinese immigrant families and 15 Euro-Canadian families. These data are part of a larger study, the purpose of which was to explore the illness experience and help-seeking behavior of these families. The data show that the Euro-Canadian parents see the illness or disability as affecting only particular aspects of the child's life, while the child as a whole is seen as normal. The Chinese parents more frequently describe the illness as having global effects on many aspects of the child's present and future life. These differences in perception are discussed in relation to literature about Chinese culture and the experience of immigration. It is suggested that how a parent perceives a child's illness affects how a parent cares for the child and interacts with health care providers.     

Chronic grief: experiences of working parents of children with chronic illness

Parents of children with chronic illness experience multiple stressors associated with their numerous roles. For parents who are working full time and caring for a child with chronic illness, the stressors related to managing work and caring responsibilities are magnified. Although the impact of caring for a child with chronic illness has been widely investigated, the literature reveals a paucity of research on the experiences of parents who are also in full time employment. This paper shares qualitative findings of a study involving interviews of twelve parents who were working full time while caring for a child with chronic illness. Data was collected through in-depth semi structured interviews and thematic analysis was then used to develop and categorise themes. Two intertwined themes are reported: (1) grief and (2) dealing with professionals. In this study, parents revealed the chronic grief they experienced in relation to their child's condition, which often recurred at various stages of the child's illness. The child's initial diagnosis was found to be the most stressful part of the grieving process, with most feeling their voices as parents were not being heard or valued by health professionals at this time. This affected parents' confidence in the health care system and triggered the re-emergence of grief, aggravating an already stressful situation. The findings illustrate that the grief experienced by these parents can be exacerbated by their dealings with health professionals. Implications for various health professionals are drawn from the findings in order to highlight avenues where guidance and support can be provided to these parents.     

The experience of stress in parents of children hospitalized with long-term disabilities

This paper discusses parents' perceptions of their stress when their children are hospitalized with long-term disabilities. The study used a qualitative method. Data were collected with 40 parents through in-hospital interviews, and were analysed using the method of constant, comparative analysis. Parents' own interpretation of their stress experience is considered in relation to their perception of their role. The data suggest that the hospitalization of a child requires parents to make changes in their usual parenting role. In describing the nature of the changes required, parents identified the need to understand the illness experience; become familiar with the hospital environment; adapt to their changing relationship with the child and other family members; and negotiate with health professionals about their child's care. Verbatim accounts are used in this paper to illustrate parents' interpretations of their hospital experience. Parents perceive their role in their hospitalized child's care differently than health professionals do, and it would appear that much parental stress is attributable to the 'space' between health care workers' understanding of parents' experience, and parents' own comprehension. If nurses understood parents' own perception of their hospital-related stress better, more effective nursing care could be developed. Further research is needed in this important area.     

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.     

Caring for a child with a progressive illness during the complex chronic phase: parents'experience of facing adversity

This qualitative study explored the day-to-day experiences of parents caring at home for a child with a progressive life-threatening illness at a certain point in their illness trajectory. This point in the trajectory is when the child lives with a complex chronic condition, and is in need of specialized and time-consuming care, but is not yet in a terminal phase. The naturalistic research design of phenomenology was chosen for the study's methodology. Parents'experiences of caring for their child were conceptualized as an ongoing process of 'facing adversity', as parents had continuously to redefine and then manage those changes resulting from the progressive nature of their child's condition. Concepts of normalization and chronic sorrow are considered in the conceptualization, as are the challenges of caregiving (particularly of mothers) who faced many hardships in their role, including the myriad of changes related to the increased burden of care. Implications for nursing practice are identified.     

Continuity of care and caring: what matters to parents of children with life-threatening conditions

This article presents parents' perceptions regarding continuity and coordination of care of children with life-threatening conditions as revealed through qualitative analysis of interviews with 36 bereaved parents of children who died after receiving care at three geographically dispersed teaching hospitals in the United States. Parental concerns about and experience of continuity of care were framed primarily in terms of the quality and continuity of relationships with healthcare providers throughout a child's illness and death and the continuity and consistency of information that they received about their child's condition and care. Continuity in relationships was perceived as key in ensuring that clinicians knew and cared about the child and parents, which in turn contributed to parents' confidence that their child would receive the best possible care. In the absence of continuous, caring relationships with staff, parents reported frustration, hypervigilance, and mistrust about the quality of care that their child received.     

Touchpoints: changing the face of pediatric nurse practitioner education

Touchpoints is an interdisciplinary relational model of healthcare primarily used with parents and young children. The underlying premise of the Touchpoints approach is to support the parent/child relationship during the health encounter by enhancing parents' efforts to optimize their child's physical and psychological development. Nurse practitioners who use this approach in practice find they are able to connect quickly to the parents' most urgent concerns for their child. Our experience has been that a pediatric nurse practitioner program that uses Touchpoints as the underlying framework can assist students in achieving a holistic view of families by focusing the curriculum more directly on development and relationships. Students learn that building a relationship with parents, and joining them in the care of their child, produces an atmosphere in the health encounter of mutual respect and trust. Parents leave the encounter feeling satisfied their concern for their child has been heard and questions have been seriously discussed; students leave feeling competent and valued by their patients. Touchpoints provides a model for teaching and demonstrating the development of interpersonal relationships by using the language of the child's behavior.     

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.     

Parent and teacher perceptions of the impact of school nurse interventions on children's self-management of diabetes

Diabetes is a common chronic illness among school-age children. The school nurse collaborates with the student, parents, and teachers to help the child manage their diabetes effectively. Very little is known about the relationship between school nurse interventions and parent/teacher perceptions of the child's self-management. We examined this relationship in a sample of 69 school-age children who received case management from school nurses. Our findings suggest that teachers and parents do not always agree on how well a child manages their illness. When school nurses provide more education and counseling, parents are more likely to perceive an improvement in their child's self-management. Teachers are more likely to perceive an improvement when the nurse provides more classroom visits and includes the physical education teacher and guidance counselor. These findings suggest that the roles of educator, counselor, and collaborator are important for school nurses who provide care to school-age children with diabetes.     

The impact of caring on young carer's lives. An international literature review (1990-2006)

Children growing up with chronically ill parents and those who are involved into the care of their parents are at risk to experience adverse effects on their whole development. This literature study is part of a research project that intends to work out a basis for specific support for young carers and their families in Germany. Questions concerning the impact on young carers, and also experiences of growing up with a chronically ill parent where addressed to the last 15 years' relevant literature. Children experience positive as well as negative effects, but it is difficult to distinguish between caring responsibilities and the impact of growing up with a chronically ill parent. Positive effects are a good sense of self-esteem, maturity, identity, a close relation to the parents, as well as feeling well prepared for further life. Negative effects become apparent for the child's physical, psychosocial and educational development. Not every young carer experiences negative effects, and not every child of a chronically ill parent will necessarily experience disadvantage. Nevertheless, research results refer to the need for action in order to prevent negative consequences for the child's future life. Projects of support need to integrate the whole family and besides supporting the children, the parents need to be stabilised as well.     

Home care of a child dying of a malignancy and parental awareness of a child's impending death

In this population-based study, we found that parents who are aware that their child will die from a malignancy are more likely to care for their child at home during the child's last month of life compared to parents who are not aware. End-of-life home care was comparable to hospital care for satisfactory pain relief, access to pain relief and access to medications for other physical symptoms. Using an anonymous postal questionnaire, we obtained information from 449 parents in Sweden who had lost a child due to a malignancy between 1992 and 1997, 4 to 9 years before participating in our study. The prevalence of dying at home and being cared for at home during the last month of life was 23.7% when parents realized intellectually more than 1 month in advance that the child would die (versus 12% who did not), 28.7% for parents who sensed that the child was aware of his or her imminent death (versus 7.8% who did not sense this) and 21.9% for those who received information that the child's illness was incurable (versus 9.4% who did not receive the information). Prevalence of children's unrelieved pain was 11.6% for those receiving home care and 15.3% for those receiving care outside the home.     

Children with cancer and their families

This study is aimed at reviewing the existing literature about children with cancer and their families in order to identify themes that have been researched and to survey indicators of need, thus giving subsidies for the systematization of nursing care. Systemized data collection was carried out in computerized databases between 1997 and 2002 using the keywords child, cancer, chronic illness/disease, family and nursing. A non-systemized research of scientific publications was also carried out. Results are grouped in three themes: impact of the child's cancer on the family system; adaptation process and coping strategies used by the parents in the face of the illness; and the process of loss and mourning in view of the child's death. The review demonstrated that nursing is constructing specific knowledge about the individual, cultural and regional needs of families of children with cancer, with a view to a nursing assistance that considers care in accordance to the singularity of each case.     

Strategies used by families to navigate uncharted territory when a child is dying

The eight families in this grounded theory study moved through a process of navigating uncharted territory as they lived with a child who was dying from a neurodegenerative, life-threatening illness. The process was characterized by four dimensions: entering unfamiliar territory, shifting priorities, creating meaning, and holding the fort. Within these dimensions, parents used strategies such as seeking and sharing information; going into slow motion and focusing on the child; taking one day at a time and reframing the experience; and living by the clock and promoting the child's health, to manage the physical, cognitive, and emotional work arising from the situation. The focus of this paper is on the strategies that families used. Suggestions for practice and research are offered to assist health care professionals in providing optimal care to these families.     

Strategies for feeling secure influence parents' participation in care

This study investigates what makes parents of hospitalized children feel secure and factors influencing their level of participation. It also studies, whether the degree to which parents participate affects their child's pain and sleep during hospitalization. Questionnaires were distributed to a series of parents whose children were discharged from two paediatric surgical wards and one paediatric medical-surgical ward at two university hospitals in Sweden. Parental security is almost equally distributed among three given alternatives: security derived from trusting that professionals know how to take care of the child; security derived from having control over what is happening to the child; and security derived from being the one who knows the child best. Depending upon the strategy chosen, parents want to participate at different levels in their child's care. The results indicate a relationship between parental participation and their estimation of their child's pain. The study confirms a pattern, developed in a previous study, in how parents adopt different strategies affecting their participation during their child's hospitalization. Some parents who wanted to participate in more aspects of their child's care seemed to think that their child had less pain than parents who preferred more limited participation.     

Transition experience of parents caring of children with epilepsy: a phenomenological study

BACKGROUND: Families who have a child with epilepsy show a significant impact on both the dynamics of the child's development and family systems in a social context. Knowledge of a family's lived experience in dealing with the early stages of their child's illness will provide a deeper understanding of their life and coping process. Most studies have focused on the child's developmental issues, parental attitudes, coping strategies and the child's adjustment. In order to assist families to cope with the early stage of having a child with epilepsy, nurses need to understand the nature of a family's lived experience. OBJECTIVE: The purpose of this study was to investigate the essence of the family health-illness transition experience from the parental perspective when a child is afflicted with epilepsy. DESIGN: Colaizzi's phenomenological approach was used. In-depth interviews were conducted with ten couples with regard to the first one and a half years after the diagnosis of epilepsy. SETTINGS AND PARTICIPANTS: Ten couples from two medical centers in Taiwan participated in the study. The age range of the children at diagnosis was 0.2-4.3 years. METHODS: Open attitude and imaginative variation techniques were used to investigate the meanings of the experience. This study used Colaizzi's method with both destructured and restructured analysis. Lincoln and Guba's trustworthiness criteria were employed to evaluate methodological rigor. RESULTS: Three concepts emerged: parents' psychological reactions, parental coping patterns and family resources. The parents' psychological reaction was that of being emotionally traumatized and physically exhausted. Parental coping patterns were vigilant parenting and aimed at reframing roles, facing the social challenge and assisting the child's social re-integration. The nature of family resources was family resiliency. The findings provide a scientific knowledge base for nurses when assisting parents and children during the health to illness transitional phase following a diagnosis of epilepsy.     

Care of sick children by parents: a meaningful role

Parental involvement in their child's care in hospital has undergone great change over the last century. Studies have shown how 'maternal deprivation' and 'separation anxiety' expressed by children are detrimental to a child's recovery in hospital. Striving efforts have been made to develop family-centred care, promote normality of the family unit and continue with the normal routine of the child's life within the limitations of a hospital environment and the child's illness. Expectations of the parental role in hospital need to be identified and expressed from both the parents and staff to establish an understanding that will ultimately be best for the child. Many studies have highlighted benefits to both parent and child from parental participation in hospital. However, disadvantages have been identified from resident parents who feel captive to their new situation and role. Efforts for family-centred care are highly advocated now. Care-by-Parent units have been set up in some areas to promote this idea and, although many advantages have been identified, they are not without their problems. The success of parental involvement is dependent on both parents' and staff's attitudes, enthusiasm and willingness to work together.