Parents' resources and home management of the care of chronically ill infants.

PURPOSE. To identify resources of parents or primary caretakers who managed chronically ill infants at home and to determine psychometric properties of Home Care Resources Inventory (HCRI)

DESIGN. Cross-sectional, descriptive

SETTING. Outpatient clinics

PARTICIPANTS. Parents or primary caretakers (N = 100) of chronically ill infants who were discharged from hospital at least one week; 93 of sample were mothers; infants' ages ranged from 1-22 months

MAIN OUTCOME MEASURES. HCRI, the Spielberger State Anxiety Inventory, and a demographic questionnaire

RESULTS. Parents reported strong resources in the area of support and inconsistent resources in areas of coping, time, and respite. The HCRI has acceptable psychometric properties.

CONCLUSIONS. Identifying resources, especially personal time and respite, is essential for successful home management of chronically ill infants. The HCRI can be used to pinpoint areas that are strong or weak in the two resource areas measured.

Key words: Chronically ill infants, instrument development, pediatric home care, resources

Many infants are sent home from hospitals with compromised physical and developmental status, complex treatment regimens, and continuous monitoring systems. They require a sophisticated and demanding level of care in the home by their families. Parents are often asked to acquire knowledge and to develop skills essential to the management of their infants at home while simultaneously maintaining personal and family responsibilities.

The process of identifying, acquiring, and utilizing resources that facilitate caretaking is a significant task for parents with chronically ill infants. Application of this process is essential for successful home care management of chronically ill infants.

Nursing assessment of available resources within the family is necessary to design and implement a realistic and effective plan of care. This is particularly applicable to home care nursing practice. During the initial as well as subsequent home visits, the nurse needs to assess the availability of the family's resources as indicators for determining their ability to care for a sick child. There is little in the nursing literature, however, that elaborates upon this concept. The purpose of this study was to identify resources of parents who manage the care of chronically ill infants at home and to determine the psychometric properties of the Home Care Resources Inventory (HCRI).

Review of Literature

Both Hill (1949, 1958) and McCubbin and associates (McCubbin & Patterson, 1981; McCubbin & Thompson, 1987) have advanced family stress theories based on the premise that families develop strengths and capabilities to foster growth and development of their members and to protect them from disruption and stressors. According to these theorists, the availability and quality of resources play an important role in determining a family's vulnerability to a stressor event and the ability to cope adequately after such an event. Support, coping strategies, and the utilization of a broad range of resources are necessary to maintain an optimal level of function and well-being.

Descriptions of parental needs, problems, and concerns associated with the home care of their chronically ill infants and children have been well-documented (Butts et al., 1988; Dimaggio & Sheetz, 1983; Eikner, 1986; Goodman & Sauve, 1985; Krepper, Young, & Cummings, 1994; Sterling, 1990; Young, Creighton, & Sauve, 1988).

Although parents may welcome having their ill child at home, they may not be prepared to compromise privacy and family rituals, nor share control of their child (Krepper et al., 1994). Arenson (1988) reported that parental care of a chronically ill infant at home consumes energy, time, and financial resources; deprives the family of privacy; and creates emotional and social isolation. Katz, Baker, and Osborn (1991) identified factors that significantly affect families who manage sick children at home. In the case of children receiving complex care, setting up a mini NICU at home, including equipment maintenance, may escalate costs beyond the initial expectations of the parents. From a social perspective, these families often have difficulty finding qualified baby sitters, restricting personal time for respite and social contact …