Association Between Children With Life-Threatening Conditions and Their Parents’ and Siblings’ Mental and Physical Health

Abstract

IMPORTANCE Despite concerns regarding the potential deleterious physical and mental health outcomes among family members of a child with a life-threatening condition (LTC), few studies have examined empirical measures of health outcomes among these family members.OBJECTIVES To examine whether mothers, fathers, sisters, and brothers of children with 1 of 4 types of pediatric LTCs have higher rates of health care encounters, diagnoses, and prescriptions compared with families of children without these conditions. DESIGN, SETTING, AND PARTICIPANTSThis retrospective cohort study included US families with commercial insurance coverage from a single carrier. Children who had 1 of 4 LTCs (substantial prematurity, critical congenital heart disease, cancer, or a condition resulting in severe neurologic impairment) were identified by a diagnosis in their insurance claim data between July 1, 2015, and June 30, 2016. Each case child and their family was matched with up to 4 control children and their families based on the age of the case and control children. Data were analyzed between August 2020 and March 2021. EXPOSURES Having a child or sibling with substantial prematurity, critical congenital heart disease, cancer, or a condition resulting in severe and progressive neurologic impairment.MAIN OUTCOMES Rates of occurrence of health care encounters, physical and mental health diagnoses, and physical and mental health medication prescriptions, identified from insurance claims data, were compared between case and control families using a multivariable negative binomial regression model. The statistical analysis adjusted for observed differences between case and control families and accounted for clustering at the family level. RESULTSThe study included 25 528 children (6909 case children [27.1%] and 18 619 control children [72.9%]; median age, 6.0 years [IQR, 1-13 years]; 13 294 [52.1%] male), 43 357 parents (11 586 case parents [26.7%] and 31 771 control parents [73.3%]; mean [SD] age, 40.4 [8.1] years; 22 318 [51.5%] female), and 25 706 siblings (7664 case siblings [29.8%] and 18 042 control siblings [70.2%]; mean [SD] age, 12.1 [6.5] years; 13 114 [51.0%] male). Overall, case mothers had higher rates of the composite outcome of health care encounters, diagnoses, and prescriptions compared with control mothers (incident rate ratio [IRR], 1.61; 95% CI, 1.54-1.68), as did case fathers compared with control fathers (IRR, 1.55; 95% CI, 1.46-1.64). Sisters of children with LTCs had higher rates of the composite outcome compared with sisters of children without LTCs (IRR, 1.68; 95% CI, 1.55-1.82), as did brothers of children with LTCs compared with brothers of children without LTCs (IRR, 1.70; 95% CI, 1.56-1.85).

Mental health outcomes in parents of children with a cancer diagnosis in Sweden: a nationwide cohort study

“…Previous studies found a higher risk of worse mental health among parents of children with cancer compared with the general population, 7 , 14 , 30 , 31 which was also observed in our study. We found that fathers were affected immediately when their child was diagnosed with cancer.…”

“…A study using the insurance claims data of US families suggested a 66% increase in the risk of mental health diagnoses in fathers with two years of follow-up. 30 In a Danish registry-based study, however, elevated risk of hospital contacts for psychiatric disorders was not observed. 18 The differences in findings may be explained by the different sampling strategies and potential underestimation of mental health disorders.…”

Psychosocial Considerations for the Child with Rare Disease: A Review with Recommendations and Calls to Action

“…These may take the form of in-person events, group offerings, virtual live meeting rooms, or asynchronous communication forums such as social media or chat rooms [ 57 ]. Despite the accessibility of virtual social support options, parent caregivers may experience significant behavioral health challenges that can be exacerbated by caregiving demands and all that comes with caring for RD [ 75 ].…”

Home-Based Care for Children with Serious Illness: Ecological Framework and Research Implications

“…Parents provide the majority of care [ 6 ], although siblings also play important roles [ 16 , 49 ]. While the family impacts the child’s care, a child’s illness also impacts the physical and mental health and well-being of family members [ 50 , 51 , 52 , 53 , 54 ]. Negative impacts can be mitigated by extended family and close friends [ 55 ], who can provide emotional support and help with tasks such as cooking, cleaning, and childcare [ 56 , 57 ].…”