A prospective study of the impact of home monitoring on the family.

Fourteen families whose infants required home monitoring for apnea were followed for approximately 5 years from the initial contact (1977). Each family received at least three psychiatric interviews and two follow-up contacts. Effects on the monitored infant, siblings, and parents were examined in open and semi-structured interviews. At first follow-up (mean of 21 months after monitoring discontinuance), seven of 14 monitored children were characterized as spoiled by parents. By the second follow-up, 2 1/2 years later, nine children showed speech, learning, and motor problems; five of these nine children had required resuscitation during their initial episode. Apnea severity was also related to both duration of monitoring and number of additional psychiatric interviews requested by parents or staff. Of 16 older siblings, 12 had psychological problems reported by their parents at first follow-up; these problems appeared to be largely resolved by the second follow-up, although three children were still having problems that caused parental concern. Monitoring, as well as the apnea itself, caused substantial distress manifested in depression, fatigue, and anxiety in many parents, particularly mothers. However, despite their considerable distress, none of the families discontinued monitoring prematurely. Results of the study indicated that the monitoring experience can be divided into four phases: doubt/acceptance, dependence/frustration, discontinuance, and late effects, with substantial differences in parents' responses occurring only in the last two phases.