Caregivers of Medically Fragile Children with Technology Needs

Background: Medically fragile children (MFC) with technology needs have complex and challenging health care needs in the home setting. Providing care can have both negative and positive psychological and social impacts on the caregivers’ health related quality of life (HRQOL). Aims: a) To examine the relationship between caregiver burden, caregiving satisfaction, and HRQOL in caregivers of MFC with technology needs. b) To identify caregiver and child related variables of caregiver burden and caregiving satisfaction. Methods: A cross sectional study was conducted over four months at a children’s hospital and outpatient clinics. Caregivers completed three one-time surveys (Zarit Burden Interview, Caregiving Satisfaction Scale, and the Health Survey Short Form – 12 version 2). Socio-demographics of the caregivers and children and clinical characteristics of the MFC were also collected. Results: Caregivers were mainly females (n = 30, 93.8%) and biological mothers (n = 26, 81.3%). A significant inverse relationship was found between caregiver burden and caregiving satisfaction (r = -.396, p = .025). Caregiver burden had a significant, negative association with the mental health component of the caregivers’ HRQOL (r = -.837, p = .000). Caregiving satisfaction had a significant positive association with the mental health component of the caregivers’ HRQOL (r= .437, p = .012). Education level of the caregivers was significant and positively correlated with caregiver burden (rs = .462, p = .008) and negatively correlated to caregiving satisfaction (rs = -.353, p = .047). Family income also was significant and positively associated to caregiver burden (rs = .507, p = .005). Caucasian caregivers had significantly higher caregiver burden (M = 30, SD = 17.5) as compared to caregivers who were of Other race (M = 16.7, SD = 14.6); t (28) = 2.11, p = 0.044). Caucasian caregivers had significantly lower caregiving satisfaction (M = 48.4, SD = 7.3) as compared to caregivers of Other race (M = 55.4, SD = 5.1); t (28) = -2.80, p = 0.009). Conclusions: Despite caregiver burden, caregivers of MFC with technology needs have high caregiving satisfaction. The significant associations of the caregivers’ mental HRQOL to caregiver burden and caregiving satisfaction highlight the importance of identifying caregivers at risk who become overwhelmed with care, decreasing their caregiving satisfaction and increasing their caregiver burden