Validation of a questionnaire to evaluate the quality of life of nonprofessional caregivers of dependent persons

Aim of the study. To determine the acceptance, validity and reliability of the questionnaire for assessing the type of informal care that caregivers of dependent people give and the effects this care might have on the health of the carer. Background. In Spain, the formal health care system provides 12% of the total time dedicated to health care, the remaining 88% is carried out by the informal system within the home environment. The act of caring has effects on various areas of the life of the carer and on family functioning. This makes clear the existing risk when the principal carer becomes a secondary nurse. Methods. This research was a cross-sectional design, carried out in municipalities in the province of Barcelona (Spain) from January to December 1997. The subjects of the study were 240 caregivers of dependent people. The questionnaire (ICUB97(C)) is based on the Virginia Henderson's 14 Needs nursing model. The validity of the content was assessed through the consensus of a group of experts, validity of design by means of comparison with the hypotheses. Results. Test-retest reliability was completed for the three parts of the questionnaire and the kappa index values was 0.89, 0.80 and 0.75 for each part. The higher the level of dependency of the person cared for, the more care tasks the carer had to perform. A correlation coefficient of 0.58 was obtained for the Barthel Index (P < 0.001) and 0.53 on the Philadelphia Index (P < 0.001). The care tasks performed by the carer showing greatest correlation with dependency level were; help with elimination (r=0.73, P < 0.001), help with feeding (r=0.55, P < 0.001) and help in personal development (r=0.55, P=0.001). Conclusions. This questionnaire provides a reliable and valid instrument for measuring the care given by caregivers to dependent people, to meet their basic needs as well as for assessing the needs of the carers who experience problems by the act of caring. It is therefore important for nursing practice, to have a validated instrument available for identifying the tasks performed by family carers and the effects on their health.