Where you are matters: Daily health-related quality of life in parents of children with special healthcare needs

Abstract

Objective: Parents of children with special healthcare needs (CSHCNs) tend to report low health-related quality of life (HRQoL) in general, however, little is known about parents' day-to-day experiences particularly while their child is in the hospital. Hospital experiences are especially important for families of CSHCN, who are known to spend a considerable amount of time at the hospital. The goals of this study were to examine how daily HRQoL fluctuates in parent caregivers, and to further examine the role of context (hospital vs. home) in daily HRQoL.

Method: One hundred parents of CSHCN (18-69 years, M = 38.12, SD = 8.64) were recruited to participate in the TRIUMPH study (To Research, Illuminate, and Understand Medical Parent Health) from inpatient pediatric units at one children's hospital. For 14 consecutive days, participants received email prompts to complete online survey measures reporting on their daily HRQoL.

Results: Multilevel models indicated that daily HRQoL fluctuated significantly at both between- and within-person levels. Further, daily HRQoL was significantly lower and had significantly more within-person variability on hospital days as compared to home days.

Conclusions: Our results indicated that parents' HRQoL is both poorer and more volatile within the hospital environment. Our results call attention to the need to assess intraindividual variability in parents of CSHCN, as it is clear that parent caregivers are a nuanced population with contextually relevant support needs.

Keywords: caregiver functioning; health care services and utilization; psychosocial functioning; quality of life.