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
[11]   Family impact of childhood neurodevelopmental disability: considering adaptive and maladaptive behaviour [J].
Gardiner, E. ;
Miller, A. R. ;
Lach, L. M. .
JOURNAL OF INTELLECTUAL DISABILITY RESEARCH, 2018, 62 (10) :888-899
[12]   Fatigue in the mothers of children with cerebral palsy [J].
Garip, Yesim ;
Ozel, Sumru ;
Tuncer, Ozgul Bozkurt ;
Kilinc, Gizem ;
Seckin, Feryal ;
Arasil, Tansu .
DISABILITY AND REHABILITATION, 2017, 39 (08) :757-762
[13]   A home-based intervention using augmentative and alternative communication (AAC) techniques in rural Kenya: what are the caregivers' experiences? [J].
Gona, J. K. ;
Newton, C. R. ;
Hartley, S. ;
Bunning, K. .
CHILD CARE HEALTH AND DEVELOPMENT, 2014, 40 (01) :29-41
[14]   Impact on parents of cerebral palsy in children: A literature review [J].
Guyard, A. ;
Fauconnier, J. ;
Mermet, M. -A. ;
Cans, C. .
ARCHIVES DE PEDIATRIE, 2011, 18 (02) :204-214
[15]   Pain in children with cerebral palsy: common triggers and expressive behaviors [J].
Hadden, KL ;
von Baeyer, CL .
PAIN, 2002, 99 (1-2) :281-288
[16]  
Hendriks AHC, 2001, INT J REHABIL RES, V24, P115
[17]   Thematic analysis of spousal interaction patterns among Asian parents of children with chronic life-threatening illness [J].
Ho, Andy Hau Yan ;
Dutta, Oindrila ;
Tan-Ho, Geraldine ;
Choo, Ping Ying ;
Low, Xinyi Casuarine ;
Chong, Poh Heng ;
Ng, Carolyn ;
Ganapathy, Sashikumar .
BMJ OPEN, 2019, 9 (11)
[18]   A systematic review and meta-analysis of the effectiveness of interventions to improve psychological wellbeing in the parents of children with cerebral palsy [J].
Irwin, Louise ;
Jesmont, Ceit ;
Basu, Anna .
RESEARCH IN DEVELOPMENTAL DISABILITIES, 2019, 95
[19]   At the edge of vulnerability-lived experience of parents of children with cerebral palsy going through surgery [J].
Iversen, Anne Solveig ;
Graue, Marit ;
Raheim, Malfrid .
INTERNATIONAL JOURNAL OF QUALITATIVE STUDIES ON HEALTH AND WELL-BEING, 2013, 8
[20]   Musculo-skeletal pain, quality of life and depression in mothers of children with cerebral palsy [J].
Kaya, Kurtulus ;
Unsal-Delialioglu, Sibel ;
Ordu-Gokkaya, N. Kutay ;
Ozisler, Zuhal ;
Ergun, Nilgun ;
Ozel, Sumru ;
Ucan, Halil .
DISABILITY AND REHABILITATION, 2010, 32 (20) :1666-1672