Clarifying the concept of normalization.

PURPOSE: To refine and develop the concept of normalization. While firsthand accounts, clinical observation, and numerous studies suggest that parents of children with chronic conditions often strive to lead a normal family life, the distinguishing characteristics of normalization need to be understood before evaluating the feasibility and consequences. Conceptualizing these efforts as normalization, researchers have identified cognitive and behavioral strategies used by parents to normalize family life. SOURCES: A total of 33 articles representing 14 studies were selected through computer-assisted searches of the topic from 1966-1997, hand searches of nursing journals from 1970-1997, and analysis of reference lists. Key words in the searches included: adaptation, psychological; chronic disease; disabled persons; family; child; adolescence; parent-child relations; models, psychological; and nursing theory. Articles (N = 19) that applied and expanded the concept comprised the sample used in the analysis. A normalization construct was used. METHODS: Attributes for normalization were inductively derived based on the most recent methods for refining and developing concepts, with special attention to how family and illness affect manifestations of normalization. FINDINGS: The attributes identified in 1986 remained relevant, but required revision and expansion to reflect a contemporary understanding of normalization. Unique manifestations of normalization were identified within certain illness and family contexts. CONCLUSIONS: Knowledge synthesized from previous studies can enhance how normalization is used in future qualitative and quantitative research and in theory development. Findings indicate the need for researchers to build on the current state of knowledge and continue to further develop the concept. Understanding the findings can also sensitize clinicians to the complex process of normalizing when a child has a chronic condition.

Parents' reports of "tricks of the trade" for managing childhood chronic illness.

PURPOSE: To examine how parents respond to and manage the challenges of childhood chronic illness. DESIGN: Qualitative, comparative, secondary analysis. PARTICIPANTS: Fifty-eight families (55 mothers, 44 fathers) with a school-age child (6-15 years old) with a chronic illness. RESULTS: Three approaches to illness management were identified: strict adherence, flexible adherence, and selective adherence. These approaches varied in the extent to which parents developed and relied on target management behaviors that concurred with or deviated from the treatment plan prescribed by healthcare providers. CONCLUSIONS: The three management approaches contribute to understanding the processes associated with differing interactions between healthcare professionals and parents 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.

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.

A case illustration of family management style in childhood end stage renal disease.

Families of children with end stage renal disease (ESRD) experience their situation based on how they define the illness, manage it, and view the consequences of the illness on the family and individual family members. The purpose of this study was to describe how a family with a child with ESRD defined and managed their situation. Interviews with individual family members from two separate interview sessions were analyzed. The family's management style changed from struggling to adaptive over a 1-year period following the child's kidney transplant.

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.

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.

Quality of family life: exploration of a concept.

Research on the family's response to illness has not been characterized by deliberate attention to quality of family life issues. Most work in the field has been directed toward conceptualizing and measuring coping behaviors and impact. Conclusions regarding quality of family life must be inferred from measures not explicitly designed to measure this concept. The quality of family life is as elusive a concept as is quality of life for the individual. Theoretical and methodological approaches must be developed and tested. Oncology nurses have the potential to influence the quality of family life within the cancer experience.

Management behaviors: day-to-day adjustments to childhood chronic conditions.

To understand how families who have children with chronic conditions make daily adjustments to accommodate the children's special needs, the concept of management behaviors is explored. On a theoretical level, the adjustments are linked to an emerging conceptual model, family management style (FMS). As such, the management behaviors component of the FMS model is highlighted and developed to guide further clinical exploration and research.

Family management style: concept analysis and development.

Consistent with nursing's ongoing emphasis on theory development is the recognition of concept analysis's contribution to the advancement of theory. Following Sartori's framework for concept analysis, the authors analyzed the concept family management styles (FMS) as it relates to families in which there is a chronically ill or disabled child. The analysis includes both a review of existing conceptualizations of FMS and a model for reconceptualizing the concept. The systematic conceptualization of family response to chronic illness provides an essential foundation for developing effective, sensitive interventions that promote the growth of individual family members and the family unit as a whole.