Investigation of awareness of parents of children with cerebral palsy about illness, physiotherapy and rehabilitation

Yıl 2024, , 158 - 169, 29.05.2024

Hatice Seçinti , Hatice Adıgüzel , Nevin Ergun

https://doi.org/10.21673/anadoluklin.1349686

Öz

Aim: This study aimed to examine the awareness levels of parents who provide primary care to children with Cerebral Palsy (CP) about the disease, physiotherapy, and rehabilitation.

Methods: Parents (n=78) of children with aged 4-18 years diagnosed CP, were included in the study. Cerebral Palsy Disease, Physiotherapy, and Rehabilitation Awareness Evaluation Questionnaire was used to determine the level of awareness.

Results: The majority of the survey participants were mothers (85.9%). It was determined that the general awareness levels of the parents were low (5.17%), medium (56.41%), and high (38.46%). Awareness levels were found to be similar according to the education level and economic status of the parents (p>0.05). In addition, although parental awareness levels of children with CP increased according to their surgery history, age distribution, and gross motor function levels (GMFCS), there was no significant difference between them (p>0.05).

Conclusion: It was determined that the awareness levels of parents with children with CP about the disease, physiotherapy, and rehabilitation were generally medium and high. It was observed that the awareness levels were not affected by the education levels of the parents, the GMFCS levels of their children, the age of the children, and the economic status of the family.

Anahtar Kelimeler

Awareness, cerebral palsy, parents, rehabilitation

Teşekkür

The authors would like to thank to all of the parents who participated to study.

Serebral palsili çocukların ebeveynlerinin hastalık, fizyoterapi ve rehabilitasyon hakkındaki farkındalık durumlarının incelenmesi

Öz

Amaç: Bu çalışmanın amacı Serebral Palsi’li (SP) çocuklara primer bakım veren ebeveynlerin hastalık, fizyoterapi ve rehabilitasyon hakkındaki farkındalık düzeylerini incelemektir.

Yöntemler: Çalışmaya 4-18 yaş arası SP’li çocuğu olan 78 ebeveyn dâhil edildi. Farkındalık düzeyleri yarı yapılandırılmış görüşmelerle araştırmacıların hazırladığı Serebral Palsi Hastalık, Fizyoterapi ve Rehabilitasyon Farkındalık Değerlendirme Anketi ile belirlendi.

Bulgular: Anket katılımcılarının büyük oranda annelerden oluşuyordu (%85,9). Ebeveynlerin genel farkındalık düzeylerinin düşük (%5,17), orta (%56,41) ve yüksek (%38,46) düzeyde olduğu belirlendi. Ebeveynlerin eğitim düzeyi ve ekonomik durumuna göre farkındalık düzeyleri benzer bulundu (p>0,05). Ayrıca SP’li çocukların ameliyat öyküsü, yaş dağılımı ve kaba motor fonksiyon düzeylerine (GMFCS) göre ebeveyn farkındalık düzeyleri artmış olsa da, farkındalık seviyeleri arasında anlamlı fark bulunmadı (p>0,05).

Sonuç: SP’li çocukları olan ebeveynlerin hastalık, sosyal ve günlük yaşam aktiviteleri ile fizyoterapi ve rehabilitasyon hakkındaki farkındalık düzeylerinin genel olarak orta ve yüksek olduğu saptandı. Farkındalık düzeylerinin, ebeveyn eğitim düzeylerinden, çocuklarının kaba motor fonksiyon seviyelerinden, çocukların yaşlarından ve ailenin ekonomik durumlarından etkilenmediği gözlendi.

Anahtar Kelimeler

Ebeveyn, farkındalık, rehabilitasyon, serebral palsi

Kaynakça

• Sadowska M, Sarecka-Hujar B, Kopyta I. Cerebral palsy: Current opinions on definition, epidemiology, risk factors, classification and treatment options. Neuropsychiatr Dis Treat. 2020;16:1505.
• Schuengel C, Rentinck I, Stolk J, et al. Parents’ reactions to the diagnosis of cerebral palsy: associations between resolution, age and severity of disability. Child Care Health Dev. 2009;35(5):673-80.
• Al‐Gamal E, Long T. Psychological distress and perceived support among Jordanian parents living with a child with cerebral palsy: A cross‐sectional study. Scand J Caring Sci. 2013;27(3):624-31.
• Aydin R, Nur H. Family-centered approach in the management of children with cerebral palsy. Turk J Phys Med Rehabil. 2012;58.
• Palisano R, Almarsi N, Chiarello L, Orlin M, Bagley A, Maggs J. Family needs of parents of children and youth with cerebral palsy. Child Care Health Dev. 2010;36(1):85-92.
• Kruijsen‐Terpstra AJ, Ketelaar M, Boeije H, et al. Parents’ experiences with physical and occupational therapy for their young child with cerebral palsy: a mixed studies review. Child Care Health Dev. 2014;40(6):787-96.
• Peplow UC, Carpenter C. Perceptions of parents of children with cerebral palsy about the relevance of, and adherence to, exercise programs: a qualitative study. Phys Occup Ther Pediatr. 2013;33(3):285-99.
• Wiart L, Ray L, Darrah J, Magill-Evans J. Parents’ perspectives on occupational therapy and physical therapy goals for children with cerebral palsy. Disabil Rehabil. 2010;32(3):248-58.
• Hisar F, Abic A. Özel Eğitim Merkezinde Eğitim Gören Engelli Çocukların Evde Bakım Gereksinimlerinin Belirlenmesi. Sağlık ve Toplum. 2016;26(1):46-55.
• Lillo-Navarro C, Medina-Mirapeix F, Escolar-Reina P, Montilla-Herrador J, Gomez-Arnaldos F, Oliveira-Sousa SL. Parents of children with physical disabilities perceive that characteristics of home exercise programs and physiotherapists’ teaching styles influence adherence: a qualitative study. J Physiother. 2015;61(2):81-6.
• Rosenbaum P, King S, Law M, King G, Evans J. Family-centred service: A conceptual framework and research review. Family-Centred Assessment and Intervention in Pediatric Rehabilitation, 2014; p. 1-20.
• Aydın R, Tedavisinde NHSPÇ. Aile Odaklı Yaklaşım. Turk J Phys Med Rehab. 2012;58:229-35.
• Chen K-L, Tseng M-H, Shieh J-Y, Lu L, Huang C-Y. Determinants of quality of life in children with cerebral palsy: A comprehensive biopsychosocial approach. Res Dev Disabil. 2014;35(2):520-8.
• Raina P, O’Donnell M, Rosenbaum P, et al. The health and well-being of caregivers of children with cerebral palsy. Pediatrics. 2005;115(6):e626-e36.
• Gündede E. Serebral Palsili Çocukların Fonksiyonelliği İle Ebeveynlerinin Bakım Yükü, Aktivite Düzeyi, Yaşam Kalitesi ve Psikolojik Durumu Arasındaki İlişki: Yüksek lisans tezi, İstanbul: Okan Üniversitesi; 2018.
• Sahin S, Barkın K, Demirok T, Meral H. Hemiparatik serebral palsili çocukların ve bakım verenlerinin çocuklara yönelik aktivite tercihlerinin incelenmesi. Ergoterapi ve Rehabilitasyon Dergisi. 2019;7(1):41-6.
• Sipal R, Schuengel C, Voorman J, Van Eck M, Becher J. Course of behaviour problems of children with cerebral palsy: the role of parental stress and support. Child Care Health Dev. 2010;36(1):74-84.
• Dambi JM, Mandizvidza C, Chiwaridzo M, Nhunzvi C, Tadyanemhandu C. Does an educational workshop have an impact on caregivers’ levels of knowledge about cerebral palsy? A comparative, descriptive cross-sectional survey of Zimbabwean caregivers. Malawi Med J. 2016;28(4):167-73.
• Basaran A, Karadavut KI, Uneri S, Balbaloglu O, Atasoy N. The effect of having a children with cerebral palsy on quality of life, burn-out, depression and anxiety scores: a comparative study. Eur J Phys Rehabil Med. 2013;49(6):815-22.
• Marrón EM, Redolar-Ripol D, Boixadós M, et al. Burden on caregivers of children with cerebral palsy: predictors and related factors. Universitas Psychologica. 2013;12(3):767-77.
• Wijesinghe CJ, Cunningham N, Fonseka P, Hewage CG, Østbye T. Factors associated with caregiver burden among caregivers of children with cerebral palsy in Sri Lanka. Asia Pac J Public Health. 2015;27(1):85-95.
• Difazio RL, Vessey JA, Zurakowski D, Snyder BD. Differences in health‐related quality of life and caregiver burden after hip and spine surgery in non‐ambulatory children with severe cerebral palsy. Dev Med Child Neurol. 2016;58(3):298-305.
• Tsirikos AI, Chang WN, Dabney KW, Miller F. Comparison of parents' and caregivers' satisfaction after spinal fusion in children with cerebral palsy. J Pediatr Orthop. 2004;24(1):54-8.
• Vadivelan K, Sekar P, Sruthi SS, Gopichandran V. Burden of caregivers of children with cerebral palsy: an intersectional analysis of gender, poverty, stigma, and public policy. BMC public health. 2020;20(1):1-8.
• Bella GP, Garcia MC, Spadari-Bratfisch RC. Salivary cortisol, stress, and health in primary caregivers (mothers) of children with cerebral palsy. Psychoneuroendocrinology. 2011;36(6):834-42.
• Calışır H, Karabudak Ss, Karataş P, Tosun Af, Meşealan I. Serebral palsili çocuğu olan annelerin aile yükü ve umutsuzluk düzeyleri. Dokuz Eylül Üniversitesi Hemşirelik Fakültesi Elektronik Dergisi. 2018;11(2):147-56.
• Yörük BN. Serebral palsili çocukların annelerinin bakım yükü ve etkileyen faktörlerin belirlenmesi: İstanbul Medipol Üniversitesi Sağlık Bilimleri Enstitüsü; 2021.
• Mohammed FM, Ali SM, Mustafa MA. Quality of life of cerebral palsy patients and their caregivers: A cross sectional study in a rehabilitation center Khartoum-Sudan (2014–2015). J Neurosci Rural Pract. 2016;7(03):355-61.
• Asiltürk S. Serebral palsili çocukların yaşam kalitesinin ve ebeveynlerinin bakım verme yüklerinin belirlenmesi: Balıkesir Üniversitesi Sağlık Bilimleri Enstitüsü; 2019.
• Svedberg LE, Englund E, Malker H, Stener-Victorin E. Comparison of impact on mood, health, and daily living experiences of primary caregivers of walking and non-walking children with cerebral palsy and provided community services support. Eur J Paediatr Neurol. 2010;14(3):239-46.
• Alruwaished A, Ali B, Alhowaimil L, Alhowaimil A, Alhowaimil N, Alessa A. Knowledge and attitude of caregivers of cerebral palsy children in Riyadh city. Int J Med Dev Ctries. 2020;4(1):12-7.
• Arora SK, Aggarwal A, Mittal H. Impact of an educational film on parental knowledge of children with cerebral palsy. Int J Pediatr. 2014;2014.
• Alruwaished A, Ali B, Alhowaimil L, Alhowaimil A, Alhowaimil A, Alessa A. Knowledge and attitude of caregivers of cerebral palsy children in Riyadh city. Int J Med Dev Ctries. 2020;4(1):12-7.
• Razavi Afzal Z, Rassafiani M, Sarfaraz Z, Malekpour M, Salehi M. A Survey on knowledge and application of caregivers regarding special care of children 1-5 years old with cerebral palsy. J Res Rehabil Sci. 2013;9(4):618-28.
• Hanifi E, Sertel M, Alpcan A, Arslan M. The Evaluation of Physical Activity and Physical Fitness Levels in Adolescent Individuals with Cerebral Palsy. Kırıkkale Ünv Tıp Fakültesi Dergisi. 2022;24(1):73-82.