The impacts of distance to hospital on families with a child with a chronic condition.

Children with chronic conditions and their families face many similar challenges that can be stressful for the family including, daily caregiving activities, financial difficulties caused by unexpected expenses, and increased use of health services to treat and help manage the condition. Many of these families, in addition to facing daily caregiving responsibilities, must travel substantial distances to access some of the necessary aspects of their child's health care. In this study, the Burke et al. (1994-1996) data of repeatedly hospitalized children and their families are used to explore a geographical dimension of family impact, distance. Outcome measures from the Feetham Family Functioning Survey and the Questionnaire on Resources and Stress are analyzed using exploratory and multivariate analysis. Results show that distance to hospital plays a role in the two areas of family life regarding relationships within the immediate family, and issues surrounding the ability to maintain the child in the family home. The implications of the results for family, health care intervention, and government policies and guidelines are discussed.

Parents' perceptions of chronic illness trajectories.

The notion of a small, generic set of chronic illness trajectories that can be independent of specific medical diagnoses, though controversial, has some theoretical, clinical, and qualitative research support. The purpose of this study was to quantitatively describe trajectories among parents of children with a chronic condition. It was hypothesized that factor analysis would confirm 3 trajectories similar to those in the qualitative literature and that parents' perceptions of their child's trajectory would differ significantly from medically based perceptions. A total of 140 parents provided data on their perceptions of the past, present, and future course of the condition of their repeatedly hospitalized child. Fourteen time-related items from the Coping Health Inventory for Parents Questionnaire on Resources and Stress and the Parenting Stress Index were analyzed. Pre- and post-hospitalization factor analyses extracted the same 8 items to construct 3 trajectories: Life Threatening; Declining; and Stable, Optimistic. The views of approximately one third of the parents differed from medically based classifications. Type of nursing care had no bearing on the perceptions of the parents.

Assessment of stressors in families with a child who has a chronic condition.

Nurses working with families who have children with a chronic condition are aware of the complexity of the tasks and stresses they deal with daily. The challenge is to uncover the issues that require the most immediate intervention while noting others for the future. This article describes the development of a comprehensive guide for experienced nurses to identify a family's stressors and tasks. It can be used with a broad range of chronic diagnoses. Nurses who have used the guide report that it helped them to focus and plan timely, appropriate nursing interventions with these families. It also serves as a record and planning tool for documenting issues that may become priorities for future interventions.

Stress-point intervention for parents of children hospitalized with chronic conditions.

Stress-point intervention by Nurses (SPIN) is a research-based intervention that can be used to assist families whose child has a chronic condition and is repeatedly hospitalized. The intervention addresses attendant family stressors, tasks, and concerns. SPIN incorporates parent-nurse contact before admission, during hospitalization, and after discharge. A nurse assists each family to develop their unique set of coping strategies, which are shaped by the family's own concerns and resources and the nurse's expertise. The effectiveness of SPIN has been tested in two intervention studies, one based in the community and another based in ambulatory clinics. Both studies found that families receiving SPIN interventions had better parental coping and family functioning, and there was less developmental regression in the child after hospitalization. SPIN can be used by nurses having experience working with families and children. A self-directed learning program assists with understanding of theoretical and practical aspects of SPIN.

Stressors in families with a child with a chronic condition: an analysis of qualitative studies and a framework.

This article presents a comprehensive, research-based, clinically useable framework of stressors and tasks for families with a child with a chronic condition. Terms such as stressors, tasks, challenges, concerns, and problems are commonly used to describe the struggles and triumphs of these families. Their unique and changing nature has complicated comprehensive description. The steps in the early development of the Burke Stressors and Tasks Framework for Families with a Child with a Chronic Condition, and its clinical uses, are briefly described. The final step in the development of the Framework is discussed in more detail. This was a "meta-analysis" of qualitative research findings that confirmed the components of the Framework. Conclusions are drawn for subsequent research steps and clinical uses of the Framework.

Stress-point intervention for parents of repeatedly hospitalized children with chronic conditions.

Little is known about how to assist children with chronic conditions and their families cope with repeated hospitalizations. A two-group, pretest-posttest study was done to determine whether a community-based, stress-point nursing intervention for parents could decrease distress and improve child and family functioning. Fifty participants were randomly assigned to intervention or usual care control groups. The intervention focused on specific, parent-verified child and family issues. Three months after hospitalization, intervention parents had better coping and family functioning than those in the usual care group. Intervention parents' anxiety was initially higher and then lower. There were no child behavior differences between the groups after hospitalization. Intervention children had no developmental regression at 2 weeks and better developmental gains 3 months after discharge than the usual care children. Stress-point intervention for families and their children with chronic conditions improved family coping and functioning, and eliminated hospitalization-induced developmental regression.

Intrapartum fetal asphyxia and the occurrence of minor deficits in 4- to 8-year-old children.

Term newborn infants, 48 of whom had mild intrapartum fetal asphyxia, and 43 controls were assessed between 4 and 8 years of age for evidence of selective brain damage and minor deficits. Measures of motor and cognitive development were obtained at 4 and at 6 to 8 years of age. Memory tests, including the Alternation Test and determinations of Extended Digit Span, Spatial Memory, and Paired Associate Learning, were given annually between 4 and 8 years of age. Assessments of the family, child health, and child behaviour were obtained. There were no differences between the asphyxia and control groups for motor or cognitive development or the serial tests of memory. The two groups did not differ in regard to family characteristics, child health, or child behaviour. These findings indicate that term newborn infants exposed to mild intrapartum fetal asphyxia do not have minor motor and cognitive deficits later in childhood.

Association of intrauterine fetal growth retardation and learning deficits at age 9 to 11 years.

OBJECTIVE: We examined the association of fetal and newborn complications, socioeconomic status, and home environment with learning deficits as assessed between 9 and 11 years of age. STUDY DESIGN: A total of 218 high-risk newborns have been assessed at 1, 4, and 9 to 11 years of age. Fetal and newborn complications included 77 newborns with growth retardation. Socioeconomic variables included parental occupation and education. Outcome measures at 9 to 11 years included the Woodcock Reading Mastery Test and the Wide Range Achievement Test. Motor and cognitive development was assessed by a neurologic examination, the Bruininks-Oseretsky Test of Motor Proficiency, and the Wechsler Intelligence Scale for Children. Behavior was assessed with the Achenbach Child Behavior Check List and Connor's Teacher Rating Scale. RESULTS: Learning deficits were identified in 77 of the 218 children (35%). Children with learning deficits had lower full-scale IQ scores and behavioral problems of inattention and anxiety. Both fetal growth retardation and the father's occupation score were independently associated with these learning deficits. CONCLUSION: Fetal growth retardation, socioeconomic status, and behavioral characteristics of inattention and anxiety are associated with less favourable academic achievement at 9 to 11 years of age.

Hazardous secrets and reluctantly taking charge: parenting a child with repeated hospitalizations.

This study developed a grounded theory of the stresses and coping responses of parents to the repeated hospitalization of chronically ill and disabled children. The theoretical sampling spanned four years and included 30 mothers of children who have a chronic illness or disability and 30 mothers of healthy children; 100 parents of disabled children who attended a weekend retreat: six community health nurses; nine mothers of chronically ill and disabled children before, during and after a hospitalization. The resulting mid-range theory identifies the most stressful aspect as "hazardous secrets" which force the parent to "reluctantly take charge" of the situation. "Vigilance", "calling a halt", "exhaustion" and "taking a break" are key constructs in the process. "Trusting parent and professional relationships" emerged only when a professional assisted in revealing secrets.

Nursing research and the care of chronically ill and disabled children.

This is a review of a group of studies comprising the nursing research literature concerning the care of chronically ill and disabled children and their families. Six purposively selected nursing journals were examined for articles published over an 8-year period (1980 to 1987), in order to investigate the scientific potential of this research in building a knowledge base for practice. The descriptive studies provide many areas for consideration in nursing assessments, particularly psychosocial aspects. However, the relatively few experimental studies of nursing interventions provide only fragments of research findings for direct application into practice. It was concluded that this body of research is in its early stages of development. Current gaps and possible future directions for nursing research are wide-ranging.

Maternal stress and repeated hospitalizations of children who are physically disabled.

A quasi-experimental study (N = 60) found that the degree and nature of the parental stress experienced with repeated hospitalizations of physically disabled children was different from that experienced by a comparison group with nondisabled children. There was more community nurse support among those with lower versus higher stress over repeated hospitalizations. Next, using qualitative methods, parent and nurse groups validated and extended the findings to the issues involved in the chronic and complex source of stress. Thus, implications from research on single, brief hospitalizations of essentially healthy children may not apply to repeatedly hospitalized, disabled children and their parents.