Riquelme Inmaculada, Sabater-Gárriz Álvaro, Montoya Pedro
Research Institute of Health Sciences (IUNICS-IdISBa), University of the Balearic Islands, 07122 Palma, Spain.
Department of Nursing and Physiotherapy, University of the Balearic Islands, 07122 Palma, Spain.
Children (Basel). 2021 Jan 27;8(2):87. doi: 10.3390/children8020087.
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 and 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.
脑瘫（CP）是一种具有影响的慢性疾病。诸如疼痛和言语障碍等伴随的合并症可能会进一步影响父母对该病症对家庭生活质量和所提供护理的影响的认知。这项横断面描述性相关性研究的目的是比较有或无慢性疼痛以及有或无言语能力的脑瘫儿童的父母关于家庭影响和医疗保健满意度的报告。59名脑瘫儿童（年龄范围 = 4至18岁）的父母完成了关于疼痛和言语能力的几个问题，以及儿童生活质量测量模型的两个模块：儿童生活质量量表2.0家庭影响模块和儿童生活质量量表医疗保健满意度通用模块。我们的研究结果显示，儿童的疼痛对家庭身体健康、社会健康和担忧有轻微影响。在无疼痛的儿童中，言语障碍增加了感知到的健康影响。父母的医疗保健满意度几乎不受疼痛或言语障碍的影响，两者都提高了父母在护理计划的[具体领域1]和[具体领域2]方面的满意度。总之，脑瘫儿童的疼痛和言语障碍会影响家庭健康，但不会影响医疗保健满意度。对家庭健康进行定期评估和干预对于设计以家庭为中心的脑瘫儿童项目至关重要。
