Pain and Communication in Children with Cerebral Palsy: Influence on Parents' Perception of Family Impact and Healthcare Satisfaction

被引:2
作者
Riquelme, Inmaculada [1 ,2 ]
Sabater-Garriz, Alvaro [1 ,2 ,3 ]
Montoya, Pedro [1 ]
机构
[1] Univ Balearic Isl, Res Inst Hlth Sci IUNICS IdISBa, Palma De Mallorca 07122, Spain
[2] Univ Balearic Isl, Dept Nursing & Physiotherapy, Palma De Mallorca 07122, Spain
[3] Fdn Aspace Baleares, Ctra Vieja de Bunyola,Km 8-2, Marratxi 07141, Spain
来源
CHILDREN-BASEL | 2021年 / 8卷 / 02期
关键词
cerebral palsy; pain; speech; family impact; healthcare satisfaction;
D O I
10.3390/children8020087
中图分类号
R72 [儿科学];
学科分类号
100202 ;
摘要
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.
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页数:10
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共 52 条
[1]   Assessment of pain, care burden, depression level, sleep quality, fatigue and quality of life in the mothers of children with cerebral palsy [J].
Albayrak, Ilknur ;
Biber, Ayten ;
Caliskan, Ahmet ;
Levendoglu, Funda .
JOURNAL OF CHILD HEALTH CARE, 2019, 23 (03) :483-494
[2]   Motor function predicts parent-reported musculoskeletal pain in children with cerebral palsy [J].
Barney, Chantel C. ;
Krach, Linda E. ;
Rivard, Patrick F. ;
Belew, John L. ;
Symons, Frank J. .
PAIN RESEARCH & MANAGEMENT, 2013, 18 (06) :323-327
[3]   Health status of caregivers of children with cerebral palsy [J].
Byrne, M. B. ;
Hurley, D. A. ;
Daly, L. ;
Cunningham, C. G. .
CHILD CARE HEALTH AND DEVELOPMENT, 2010, 36 (05) :696-702
[4]   Rehabilitation after multilevel surgery in ambulant spastic children with cerebral palsy: Children and parent experiences [J].
Capjon, Hilde ;
Bjork, Ida Torunn .
DEVELOPMENTAL NEUROREHABILITATION, 2010, 13 (03) :182-191
[5]   Developing a Sense of Knowing and Acquiring the Skills to Manage Pain in Children with Profound Cognitive Impairments: Mothers' Perspectives [J].
Carter, Bernie ;
Arnott, Janine ;
Simons, Joan ;
Bray, Lucy .
PAIN RESEARCH & MANAGEMENT, 2017, 2017
[6]   The day-to-day experiences of caring for children with Osteogenesis Imperfecta: A qualitative descriptive study [J].
Castro, Aimee R. ;
Marinello, Jessica ;
Chougui, Khadidja ;
Morand, Marilyn ;
Bilodeau, Claudette ;
Tsimicalis, Argerie .
JOURNAL OF CLINICAL NURSING, 2020, 29 (15-16) :2999-3011
[7]   Determinants of satisfaction with motor rehabilitation in people with cerebral palsy: A national survey in France (ESPaCe) [J].
Cornec, G. ;
Drewnowski, G. ;
Desguerre, I. ;
Toullet, P. ;
Boivin, J. ;
Bodoria, M. ;
De La Cruz, J. ;
Brochard, S. .
ANNALS OF PHYSICAL AND REHABILITATION MEDICINE, 2021, 64 (03)
[8]   Parent proxy-reported quality of life for children with cerebral palsy: is it related to parental psychosocial distress? [J].
Davis, E. ;
Mackinnon, A. ;
Waters, E. .
CHILD CARE HEALTH AND DEVELOPMENT, 2012, 38 (04) :553-560
[9]   Pain and hospital admissions are important factors associated with quality of life in nonambulatory children [J].
Elema, Agnes ;
Zalmstra, Trees A. L. ;
Boonstra, Anne M. ;
Narayanan, Unni G. ;
Reinders-Messelink, Heleen A. ;
v d Putten, Annette A. J. .
ACTA PAEDIATRICA, 2016, 105 (09) :E419-E425
[10]   What Parents Say About Their Child's Surgeon Parent-Reported Experiences With Pediatric Surgical Physicians [J].
Espinel, Alexandra G. ;
Shah, Rahul K. ;
Beach, Mary Catherine ;
Boss, Emily F. .
JAMA OTOLARYNGOLOGY-HEAD & NECK SURGERY, 2014, 140 (05) :397-402