The Impact of Pain in Individuals with Cerebral Palsy on Parents

Yıl 2024, , 204 - 209, 22.05.2024

Demet Gözaçan Karabulut , Sezen Tezcan

https://doi.org/10.33631/sabd.1344437

Öz

Aim: The aim of this study is to evaluate the pain seen in individuals with Cerebral Palsy (CP) and to investigate its impacts on the parents.
Material and Methods: The study included 66 individuals with Cerebral Palsy aged between 6-16, with a mean age of 8.83±3.17. The levels of the individuals included in the study were determined using the Gross Motor Function Classification System and the Manual Ability Classification System. The pain intensity of the individuals with Cerebral Palsy was assessed through a visual analog scale reported by the parents. The Impact on Family Scale was used to determine the state of the parents' impact.
Results: A significant positive correlation was found between the visual analog scale and sub-parameters of the Impact on Family Scale, excluding the coping parameter (p<0.05). A statistically significant result was found when comparing the Impact on Family Scale total scores according to the Gross Motor Function Classification System levels (p=0.026). Parents stated that their children with CP most frequently experienced leg pain, at a rate of 34.8%.
Conclusion: Our results showed that the prevalence of pain in children with Cerebral Palsy is high. The pain problems observed in individuals with Cerebral Palsy negatively impact their parents in many financial, social and familial aspects. The assessment and prevention of pain in children with CP is an important issue for both children and parents.

Anahtar Kelimeler

Cerebral Palsy, Disabilities, Pain, Parents

Serebral Palsili Bireylerde Görülen Ağrının Ebeveynler Üzerindeki Etkisi

Öz

Amaç: Bu çalışmanın amacı, Serebral Palsili (SP) bireylerde görülen ağrının değerlendirilmesi ve ebeveyne olan etkisini araştırmaktır.
Gereç ve Yöntemler: Çalışmaya yaş ortalaması 8,83±3,17 olan 6-16 yaş arası 66 SP’li birey dahil edildi. Çalışmaya dahil edilen bireylerin Kaba Motor Fonksiyon Sınıflama Sistemi ve El Becerileri Sınıflama Sistemi ile seviyeleri belirlendi. SP’li bireyin ağrı şiddeti görsel analog skalası ile ebeveyn raporu şeklinde değerlendirildi. Ebeveynlerin etkilenim durmunun belirlenmesi için Aile Etki Ölçeği kullanıldı.
Bulgular: Görsel analog skalası ile Aile Etki Ölçeği’nin başa çıkma parametresi hariç diğer alt parametreler arasında pozitif yönde anlamlı bir ilişki bulundu (p<0,05). Kaba Motor Fonksiyon Sınıflama Sistemi seviyelerine göre Aile Etki Ölçeği toplam puanları karşılaştırıldığında istatistiksel olarak anlamlı bir sonuç bulundu (p=0,026). Ebeveynler Serebral Palsili çocuklarının en sık %34,8 bacak ağrısı yaşadığını belirtti.
Sonuç: Sonuçlarımız Serebral Palsili çocuklarda ağrı prevalansının yüksek olduğunu gösterdi. Serebral Palsili bireylerde görülen ağrı problemleri ebeveynlerini finansal, sosyal ve ailesel yönden birçok boyutta olumsuz etkilemektedir. SP’li çocuklarda ağrının değerlendirilmesi ve önlenmesine yönelik yaklaşımlar hem çocuklar hem de ebeveynler açısından önemli bir konudur.

Anahtar Kelimeler

Ağrı, Ebeveynler, Engelliler, Serebral Palsi

Kaynakça

• Rosenbaum P, Paneth N, Leviton A, Goldstein M, Bax M, Damiano D, Dan B, et al. A report: the definition and classification of cerebral palsy. Dev Med Child Neurol Suppl. 2007; 109: 8-14.
• Fairhurst C, Shortland A, Chandler S, Will E, Scrutton D, Simonoff E, Baird, G. Factors associated with pain in adolescents with bilateral cerebral palsy. Dev Med Child Neurol. 2019; 61(8): 929-36.
• Penner M, Xie WY, Binepal N, Switzer L, Fehlings D. Characteristics of pain in children and youth with cerebral palsy. Pediatrics. 2013; 132(2): 407-13.
• Westbom L, Rimstedt A, Nordmark E. Assessments of pain in children and adolescents with cerebral palsy: a retrospective population‐based registry study. Dev Med Child Neurol. 2017; 59(8): 858-63.
• AlrikssonSchmidt A, Hägglund G. Pain in children and adolescents with cerebral palsy: a population‐based registry study. Acta Paediatr. 2016; 105(6): 665-70.
• Ostojic K, Paget S, Kyriagis M, Morrow A. Acute and chronic pain in children and adolescents with cerebral palsy: prevalence, interference, and management. Arch Phys Med Rehabil. 2020; 101(2): 213-9.
• Eriksson E, Hägglund G, AlrikssonSchmidt A. Pain in children and adolescents with cerebral palsy–a cross-sectional register study of 3545 individuals. BMC Neurol. 2020; 20(1): 15.
• Findlay B, Switzer L, Narayanan U, Chen S, Fehlings D. Investigating the impact of pain, age, Gross Motor Function Classification System, and sex on health‐related quality of life in children with cerebral palsy. Dev Med Child Neurol. 2016; 58(3): 292-7.
• Lowes L, Clark TS, Noritz G. Factors associated with caregiver experience in families with a child with cerebral palsy. J Pediatr Rehabil Med. 2016; 9(1): 65-72.
• Yamaguchi R, NicholsonPerry K, Hines M. Pain, pain anxiety and emotional and behavioural problems in children with cerebral palsy. Disabil Rehabil. 2014; 36(2): 125-30.
• VanGorp M, Dallmeijer AJ, vanWely L, deGroot V, Terwee CB, Flens G, et al. Pain, fatigue, depressive symptoms and sleep disturbance in young adults with cerebral palsy. Disabil Rehabil. 2021; 43(15): 2164-71.
• Tüzün EH, Guven DK, Eker L. Pain prevalence and its impact on the quality of life in a sample of Turkish children with cerebral palsy. Disabil Rehabil. 2010; 32(9): 723-8.
• Gunel MK, Mutlu A, Tarsuslu T, Livanelioglu A. Relationship among the Manual Ability Classification System (MACS), the Gross Motor Function Classification System (GMFCS), and the functional status (WeeFIM) in children with spastic cerebral palsy. Eur J Pediatr. 2009; 168(4): 477-85.
• Collins SL, Moore RA, McQuay HJ. The visual analogue pain intensity scale: what is moderate pain in millimetres? Pain. 1997; 72: 95-7.
• Riessman CK, Stein RE. The development of an Impact -on Family Scale: preliminary findings. Med Care. 1980; 18(4): 465-72.
• Beydemir F, Cavlak U, Yolacan S, & Ekici G. Reliability and validity of Turkish version of the impact on family scale: assessment of depressive symptoms and quality of life in mothers with cerebral palsied children. J Med Sci. 2009; 9(4): 175-84.
• Munro BH. Statistical methods for health care research (vol. 1). Lippincott Williams & Wilkins. 2005.
• Carozza L, AndersonMackay E, Blackmore AM, Kirkman HA, Ou J, Smith N, Love S. Chronic pain in young people with cerebral palsy: Activity limitations and coping strategies. Pediatr Phys Ther. 2022; 34(4): 489-95.
• Larsen SM, Terjesen T, Jahnsen RB, Ramstad K. Recurrent pain in adolescents with cerebral palsy: A longitudinal population‐based study. Dev Med Child Neurol. 2022; 64(3): 357-63.
• RodbyBousquet E, AlrikssonSchmidt A, Jarl J. Prevalence of pain and interference with daily activities and sleep in adults with cerebral palsy. Dev Med Child Neurol. 2021; 63(1): 60-7.
• vanderSlot WM, Benner JL, Brunton L, Engel JM, Gallien P, Hilberink SR, et al. Pain in adults with cerebral palsy: a systematic review and meta-analysis of individual participant data. Ann Phys Rehabil Med. 2021; 64(3): 101359.
• Mckinnon CT, Meehan EM, Harvey AR, Antolovich GC, Morgan PE. Prevalence and characteristics of pain in children and young adults with cerebral palsy: a systematic review. Dev Med Child Neurol. 2019; 61(3): 305-14.
• Poirot I, Laudy V, Rabilloud M, Roche S, Ginhoux T, Kassaï B, Vuillerot C. Prevalence of pain in 240 non-ambulatory children with severe cerebral palsy. Ann Phys Rehabil Med. 2017; 60(6): 371-5.
• Dambi JM, Jelsma J, Mlambo T, Chiwaridzo M, Dangarembizi-Munambah N, Corten L. An evaluation of psychometric properties of caregiver burden outcome measures used in caregivers of children with cerebral palsy: a systematic review protocol. Syst Rev. 2016; 5: 42.
• Vonneilich N, Lüdecke D, Kofahl C. The impact of care on family and health-related quality of life of parents with chronically ill and disabled children. Disabil Rehabil. 2016; 38(8): 761-7.
• Çetin ME, Sönmez M. Identification of the problems experienced by mothers with children with multiple disabilities. Elementary Educ Online. 2018; 17(3): 1252-67.
• Hauser-Cram P, Warfield ME, Shonkoff JP, Krauss MW, Sayer A, Upshur CC. Children with disabilities: a longitudinal study of child development and parent well being. Monogr Soc Res Child Dev. 2001; 66(3): 1-114.