Family response to childhood chronic illness: description of management styles.

Based on family members' subjective accounts of the illness experience, this study identifies unique styles of family response to childhood chronic illness. Drawing on principles of triangulation, the investigators collected data longitudinally from multiple family members (ill child, parents, well sibling) in 63 families using structured and unstructured data collection techniques. In all families there was a school-age child with a chronic illness. Five family management styles (FMSs) were identified. Each is made up of a distinct configuration of qualitative themes. Across the five FMSs, the configurations reflect differences in the following major aspects of the chronic illness experience: definition of the illness experience, management goals and approach, and illness consequences. The five FMSs (thriving, accommodating, enduring, struggling, and floundering) represent a continuum of difficulty families experience in managing a child's chronic illness. The FMSs also contribute to understanding the underlying processes associated with differing outcomes for families and their individual members when a child has a chronic illness.

Learning from stories: parents' accounts of the pathway to diagnosis.

Although the diagnosis of a child's chronic illness is typically a stressful time for parents, the events leading up to it vary considerably across families. As part of a larger study that addressed the experience of living with chronic illness, an analysis was undertaken to identify major themes in parental reports of the events preceding their child's diagnosis of chronic illness. Data are based on accounts given by parents in 63 families from three health science centers in the midwestern United States. Narrative analysis techniques were used to identify 5 major pathways to diagnosis (direct, delay, detour, quest, ordeal) and to explore parents' perceptions of the nature and quality of their interactions with health care providers. Results are discussed in terms of their implications for initiating positive working relationships between parents and health care providers.

Mothers' perceptions of sibling adjustment and family life in childhood chronic illness.

Researchers who study the effects of chronic illness on well siblings have generally focused on individual characteristics and their relationships with psychological adjustment. More recently, researchers suggest that sibling adjustment can be best understood within the context of the family. The purpose of this study was to examine variations in sibling behavioral adjustment in relation to mothers' perceptions of the illness experience and family life. Based on mothers' ratings on the behavior problem scale of the Child Behavior Checklist (CBCL), five siblings considered poorly adjusted and five very well-adjusted siblings were compared with respect to mothers' reports of individual family member's response to illness, illness management, parenting philosophy, presence of other stressors, availability of social supports, and impact of illness on family members and family life. Two major differences were found between mothers who rated healthy siblings either poorly or very well adjusted: (a) effects of illness on the healthy sibling, the ill child, and the marital relationship and (b) perceived controllability of the chronic illness. Devising ways of helping mothers feel confident in managing their child's illness is integral to creating an environment that promotes optimal development of their ill child and the child's siblings.

Evaluation of treatment integrity on a child psychiatric unit: an illustration.

The authors present a systematic evaluation of the implementation of a token economy protocol on a child psychiatric inpatient unit. Unobtrusive observations and staff responses to vignettes that depicted child behavior indicated that staff members did not always distribute tokens as scheduled and were inconsistent in their judgments about which behaviors should be rewarded. The results highlight the need for child psychiatric nurses to monitor systematically the implementation of care for which they are responsible.

Triangulation in qualitative research: evaluation of completeness and confirmation purposes.

The term triangulation has been applied to research strategies intended to serve two distinct purposes, confirmation and completeness. Many researchers who claim to have used a triangulated approach fail to provide evidence to show that their approach contributed to either confirmation or completeness of the data set. This paper reviews these distinct purposes and describes how triangulation of qualitative and quantitative methods was built into a study to achieve them. Analysis of data related to a single construct illustrates how data generated by qualitative and quantitative methods can provide both convergent validity and a broader understanding of one's subject matter.

Social competence of school-aged children with chronic illnesses.

This study examines social competence among 67 chronically ill children, aged 7 to 14 years, whose families participated in a grounded theory study of how families define and manage a child's chronic illness. Child Behavior Check List ratings (Achenbach & Edelbrock, 1983) by both fathers and mothers indicated a significantly greater risk for social competence difficulties among the chronically ill children as compared with the normative sample. Case vignettes, drawn from extensive interviews with family members, are used to show contrasting styles of family management and child coping and to suggest nursing interventions aimed at fostering social competence.

Description of the illness experience by adolescents with chronic renal disease.

The purpose of this study was to describe the illness experience of five adolescents with chronic renal disease. The adolescents described how renal disease had affected themselves and their daily lives. Implications for nurses when interacting with adolescents with renal disease are discussed.

Well siblings of children with chronic illness: parents' reports of their psychologic adjustment.

This article examines the psychologic adjustment among 28 well siblings of children with chronic illness, ages 6 to 16, as measured by parents' rating on the Child Behavior Checklist. Results indicate that, as a group, well siblings do not experience a higher incidence of behavior and social competence problems than the normative sample. These data suggest that well siblings may not be uniformly at greater risk for maladjustment. Sibling adjustment may be selective and vary depending on specific child characteristics and family environment influences.

Parents' views of health care providers: an exploration of the components of a positive working relationship.

In spite of the growing recognition of the influence of interactions with health care providers on how patients and family members respond to illness, more research providing data-based conceptualizations of these interactions is needed. This paper contributes to the growing body of research on the nature of relationships between health care providers and consumers. Drawing on data from interviews with 102 parents (51 couples) of children with chronic illness, the authors explore provider behaviors that promote and sustain a positive working relationship with family members.

Achieving reliability in observational research: lessons from a study of newborn temperament.

Observational studies of human responses frequently yield only tenuous or no support for hypothesized relationships. These null findings often may be due to reliance on single observations rather than on multiple measures aggregated over contexts or occasions. This article discusses the principle of aggregation and describes the development and evaluation of aggregated measures in a study of the relationship of nursery nurse's behavior to emerging newborn temperament.

Stigma in childhood chronic illness: a well sibling perspective.

The purpose of this study was to describe how well siblings view potential stigma in childhood chronic illness. Results of interview of 27 siblings are discussed using three major categories: revealing of the chronic illness to others, responses to the ill child, and impact of the illness on daily living.

Biological nonoptimality and quality of postnatal environment as codeterminants of intellectual development.

The relation of nonoptimal condition at birth to the intellectual development of children reared in 2 different environments was investigated in a 4 1/2-year longitudinal experiment. Subjects were 80 disadvantaged children, half of whom were randomly assigned at birth to a day-care program designed to prevent mild mental retardation and half to an educationally untreated control group. All subjects for this report were full-term and weighed over 2,500 grams at birth; condition at birth was considered nonoptimal if the 1-min Apgar score was less than or equal to 8. Results indicated that nonoptimal perinatal status had significant adverse effects on 4 1/2-year scores on the McCarthy Scales of Children's Abilities in the control group (p less than .01); however, test scores of children with optimal or nonoptimal Apgars did not differ within the group that received educational treatment. The results provide support for a framework stressing initial biological vulnerability and subsequent environmental insufficiency as cumulative risk factors in the development of children from low SES families.