The Impact on Family of Pediatric Chronic Respiratory Failure in the Home.
To assess the family impact of managing severe, chronic respiratory failure (CRF) at home. Better understanding will inform parental counseling and serve as a point of reference for interventions.



Families of children with CRF completed the Impact on Family Scale (IFS) and Consumer Assessment of Healthcare Providers and Systems. Using multivariable linear regression, we assessed the relationship between IFS and family, clinical, and utilization characteristics.



A total of 118 parents (60%) completed the IFS; 114 parents (58%) completed all measures. The 15-item IFS mean total score was 40 (SD = 10) with a possible range of 15-60 (greater scores indicate more impact). Modeling identified a negative association with parent emotional functioning, parent-rated child health, and private insurance only (compared with both private/public), and other family characteristics (eg, parental education, marital status, and income) were not associated with IFS scores.



Families of children with CRF are greatly impacted by their child's health. In contrast to other children with special health care needs, family characteristics were not associated with IFS scores, excluding insurance type. These results may reflect more uniform demands and stressors related to CRF. Future research should identify interventions to attenuate the impact of CRF.
Division of Critical Care, Department of Anesthesiology, Perioperative and Pain Medicine, Boston Children's Hospital, Boston, MA; Harvard Medical School, Boston, MA. Electronic address: Robert.Graham@childrens.harvard.edu.
Robert J
RJ
Graham
Tufts Medical Center, Institute for Clinical Research and Health Policy Studies, Boston, MA; Tufts University School of Medicine, Boston, MA.
Angie Mae
AM
Rodday
Tufts Medical Center, Institute for Clinical Research and Health Policy Studies, Boston, MA.
Ruth Ann
RA
Weidner
Tufts Medical Center, Institute for Clinical Research and Health Policy Studies, Boston, MA; Tufts University School of Medicine, Boston, MA.
Susan K
SK
Parsons
D000293:Adolescent; D000328:Adult; D017028:Caregivers / Q000523:psychology*; D002648:Child; D002675:Child, Preschool; D002908:Chronic Disease; D005191:Family Characteristics; D005260:Female; D062489:Health Impact Assessment; D006701:Home Nursing / Q000523:psychology*; D006801:Humans; D007223:Infant; D016014:Linear Models; D008297:Male; D008875:Middle Aged; D010287:Parent-Child Relations; D010290:Parents / Q000523:psychology*; D012131:Respiratory Insufficiency / Q000523:psychology* / Q000628:therapy; D013315:Stress, Psychological / Q000175:diagnosis / Q000209:etiology*
chronic disease management; disabilities; family health; health impact assessment; life stress; medical home; pediatrics; respiratory insufficiency