Abstract
Cerebral palsy (CP) is an impacting chronic condition. Concomitant comorbidities such as pain and speech inability may further affect parents’ perception of the pathology impact in the family quality of life and the provided care. The objective of this cross-sectional descriptive correlational study was to compare parental reports on family impact and healthcare satisfaction in children with CP with and without chronic pain and with and without speech ability. Parents of 59 children with CP (age range = 4–18 years) completed several questions about pain and speech ability and two modules of the Pediatric Quality of Life Measurement Model: The PedsQLTM 2.0 Family Impact Module and the PedsQLTM Healthcare Satisfaction Generic Module. Our findings revealed that children’s pain slightly impacted family physical health, social health and worry. In children without pain, speech inability increased the perceived health impact. Parents’ healthcare satisfaction was barely affected by pain or speech inability, both increasing parents’ satisfaction in the professional technical skills and inclusion of family domains on the care plan. In conclusion, pain and speech inability in children with CP can impact family health but not healthcare satisfaction. Regular assessment and intervention in family health is essential for the design of family-centred programs for children with CP.
Highlights
Children with cerebral palsy (CP) have unique demands, causing significant impact to the quality of life of their families
This study aims to compare parental reports on family impact and healthcare satisfaction in children with cerebral palsy with and without chronic pain, as well as with and without speech ability
No differences due to speech ability were observed on physical impact when children have chronic pain (p = 0.268)
Summary
Children with cerebral palsy (CP) have unique demands, causing significant impact to the quality of life of their families. The care that people with cerebral palsy require throughout their lives involves a great financial burden, a significant investment of time and significant repercussions on work and social activities [1,2,3] All this can generate chronic stress in the family and caregivers who take care of these persons [4,5], compromising their health and well-being [3,6,7]. Parents develop negative feelings due to reductions or difficulties in the health, social skills, behaviours or emotions experienced by their children [4,15,16] In this context, pain may be an important factor influencing family well-being, as concern for the child’s pain is one of the most reported causes of emotional stress in parents of children with CP [13,17]
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