Engelli Çocuklara Bakımverenlerin, Çocuklarının Hastalığı, Fizyoterapi ve Spor Aktiviteleri Hakkındaki Farkındalık Düzeylerinin Belirlenmesi

Yıl 2023, , 590 - 609, 31.12.2023

Hatice Adıgüzel , Pınar Kuyulu , Nevin Ergun

https://doi.org/10.21020/husbfd.1229106

Öz

Amaç: Çalışmanın amacı engelli çocukların bakımverenlerinin, çocuklarının hastalığı, fizyoterapi ve spor aktiviteleri hakkındaki farkındalık düzeylerini belirlemekti.
Gereç ve Yöntem: Çalışmaya yaş ortalaması 6,50±5,29 olan, Serebral Palsi (SP), Spina Bifida (SB), Down Sendromu (DS), Musküler Distrofi (MD) tanılı çocukların bakımverenleri (n= 65) dahil edildi. Bakımverenlere araştırmacılar tarafından hazırlanan hastalık gruplarına özgü, çoktan seçmeli 12 sorudan oluşan ‘Hastalık, Fizyoterapi ve Spor Farkındalık Anketi’ yapıldı.
Bulgular: Çalışmaya katılan yaş ortalaması 34,43±10,16 olan bakımverenlerin (n=65) %83’ü anne, %4,6’sı baba, %4,6’sı kardeş, %7,7’si ise diğer kişilerden oluştu. Hastalık tanımının DS’lu grupta %92,9, SP’li grupta % 63,6, SB’da %85,7, MD’de %72,7 oranında doğru yapıldığı bulundu. SB’da duyu problemlerinin ise %26,7 oranında bilindiği saptandı. Fizyoterapi içeriği açısından DS’lu grupta %85,7, SP’de %62,5, SB’da %40, MD’de %45,5 oranında doğru bilgiye sahip olunduğu saptandı. Bakımverenlerin engel gruplarına göre spor katılımı yapabilme yanıtları karşılaştırıldığında gruplar arasında anlamlı fark bulunmadı (p>0,05). DS’lu çocukların bakımverenlerin %92,9‘unun, SP’lilerin %75’i, MD’lerin %58,3’ü, SB’lıların %92,9’u çocuklarının spor yapabileceğini ifade etti. Sonuç: Tüm bakımverenlerin sporun çocuklarının genel iyilik hali, motivasyon ve fiziksel kapasite artışı açısından olumlu etkileneceğini düşündüğü bulundu. Engelli çocukların bakımverenlerinin hastalık farkındalık düzeylerinin ve spor aktiviteleri ile ilgili fikirlerinin iyi düzeyde olduğu fakat yeterli olmadığı saptansa da, fizyoterapi süreci hakkındaki bilgi düzeylerinin arttırılması gerektiği görüşüne varıldı.

Anahtar Kelimeler

Engelli çocuk, Bakımveren, Fizyoterapi, Spor, Farkındalık

Determination of Awareness Levels of Caregivers for Children with Disabilities About Their Children's Disease, Physiotherapy, and Sports Activities

Öz

Objective: The aim of the study was to determine the awareness levels of caregivers of disabled children about their child's illness, physiotherapy, and sports activities.
Materials and Methods: Caregivers (n=65) of children with a mean age of 6,50±5,29 diagnosed with cerebral palsy (CP), spina bifida (SD), Down syndrome (DS), and muscular dystrophy (MD) were included in the study. The ‘Disease, Physiotherapy, and Sports Awareness Questionnaire’ consisting of 12 multiple-choice questions specific to disease groups was applied.
Results: Of the caregivers (n=65) with a mean age of 34.43±10.16 who participated in the study (83% mothers, 4.6% fathers, 4.6% siblings, and 7.7% others). The definition of the disease was made correctly at 92.9% in the DS, 63.6% in the CP, 85.7% in the SB, and 72.7% in the MD group. Sensory problems in SB were known at a rate of 26.7%. 85.7% of the DS, 62.5% of the CP, 40% of the SB, and 45.5% of the MD group had accurate information in terms of physiotherapy content. There was no significant difference between the groups (p>0.05) when caregivers’ responses about participation in sports activities were compared according to disability groups. Of caregivers for children with DS, 92.9%, 75% of CP, 58.3% of MD, and 92.9% of SB stated that their children could do sports.
Conclusions: All caregivers thought that sports would positively affect their children's general well-being, motivation, and increase in physical capacity. Although it was identified that the disease awareness levels of caregivers for children with disabilities and their ideas about sports activities were at a good level.

Anahtar Kelimeler

Children with disabilities, Caregiver, Physiotherapy, Sports, Awareness

Kaynakça

• Basaran, A., Karadavut, K. I., Uneri, S., Balbaloglu, O., & Atasoy, N. (2013). 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, 49(6), 815-822. PMID: 24285025
• Beaton, D. E., Bombardier, C., Guillemin, F., & Ferraz, M. B. (2000). Guidelines for the process of cross-cultural adaptation of self-report measures. Spine, 25(24), 3186-3191. https://doi.org/10.1097/00007632-200012150-00014
• Carbone, P. S., Smith, P. J., Lewis, C., LeBlanc, C. (2021). AAP Council on Children With Disabilities, Council on Sports Medicine and Fitness Promoting the Participation of Children and Adolescents With Disabilities in Sports, Recreation, and Physical Activity. Pediatrics, 148(6), e202105466. https://doi.org/10.1542/peds.2021-054664
• Chiarello, L. A., Palisano, R. J., Maggs, J. M., Orlin, M. N., Almasri, N., Lin-Ju Kang L. J., et al. (2010). Family priorities for activity and participation of children and youth with cerebral palsy. Phys Ther, 90, 1254 –1264. https://doi.org/10.2522/ptj.20090388
• Colvin, M. K., Poysky, J., Kinnett, K., Damiani, M., Gibbons, M., Hoskin, J., et al. (2018). Psychosocial management of the patient with Duchenne muscular dystrophy. Pediatrics, 142(2), 99-109. https://doi.org/10.1542/peds.2018-0333l
• Costa, J., & Pinto-Gouveia, J. (2013). A new approach to explain the link between social support and depression in a 2-years arthritis rheumatoid sample. Is there any moderation effect of acceptance? International Journal of Psychology and Psychological Therapy, 13, 65-82. https://doi.org/10.1177/1359105313499807
• Devereux, P. G., Bullock, C. C., Gibb, Z. G., Himler, H. (2015). Social-ecological influences on interpersonal support in people with physical disability. Disability and Health Journal, 8(4), 564-572. https://doi.org/10.1016/j.dhjo.2015.05.002
• Domenech, A. C. P., Tavares, K. O., Ruedell, A. M., Nobre, J. R. D. S. (2016). Cerebral palsy: the meaning of physical therapy for mother caregivers. Fisioterapia em Movimento, 29, 757-766. https://doi.org/10.1590/1980-5918.029.004.ao12
• Fereday, J., MacDougall, C., Spizzo, M., Darbyshire, P., Schiller, W. (2009). There's nothing I can't do–I just put my mind to anything and I can do it: a qualitative analysis of how children with chronic disease and their parents account for and manage physical activity. BMC pediatrics, 9(1), 1-16. https://doi.org/10.1186/1471-2431-9-1
• Forrest, G., Plumb, C., Ziebland, S., Stein, A. (2006). Breast cancer in the family—children's perceptions of their mother's cancer and its initial treatment: qualitative study. Bmj, 332(7548), 998-1003. https://doi.org/10.1136/bmj.38793.567801.ae
• Jansen, L. M., Ketelaar, M., Vermeer, A. (2003). Parental experience of participation in physical therapy for children with physical disabilities. Developmental medicine and child neurology, 45(1), 58-69. https://doi.org/10.1111/j.1469-8749.2003.tb00861.x
• Jensen, M. P., Smith, A. E., Bombardier, C. H., Yorkston, K. M., Miró, J., Molton, I. R. (2014). Social support, depression, and physical disability: age and diagnostic group effects. Disability and Health Journal, 7(2), 164-172. https://doi.org/10.1016/j.dhjo.2013.11.001
• Jobling, A., & Cuskelly, M. (2006). Young people with Down syndrome: A preliminary investigation of health knowledge and associated behaviours. Journal of Intellectual and Developmental Disability, 31(4), 210-218.
• Karande, S., Patil, S., Kulkarni, M. (2008). Impact of an educational program on parental knowledge of cerebral palsy. The Indian Journal of Pediatrics, 75(9), 901-906. https://doi.org/10.1007/s12098-008-0160-0
• Kim, J., Kim, J., Kim, Y., Han, A., Nguyen, M. C. (2021). The contribution of physical and social activity participation to social support and happiness among people with physical disabilities. Disability and Health Journal, 14(1), 100974. https://doi.org/10.1016/j.dhjo.2020.100974
• Kolobe, T. (1991). Family-focused early intervention. Pediatric Neurologic Physical Therapy. (pp. 397-432) in. New York: Churchill Livingstone.
• Konukbay, D., & Arslan, F. (2015). The analysis of hopelessness levels and problem solving skills of parents with the disabled children. International Journal of Caring Sciences, 8(2), 344-355. http://internationaljournalofcaringsciences.org/docs/11_konukbay.pdf.
• Lang, D. M., Butz, A. M., Duggan, A. K., Serwint, J. R. (2004). Physical activity in urban school-aged children with asthma. Pediatrics, 113(4), e341-e346. https://doi.org/10.1542/peds.113.4.e341
• Martin Ginis, K. A., Ma, J. K., Latimer-Cheung, A. E., Rimmer, J. H. (2016). A systematic review of review articles addressing factors related to physical activity participation among children and adults with physical disabilities. Health psychology review, 10(4), 478-494. https://doi.org/10.1080/17437199.2016.1198240
• Meldrum, C., Scott, C., Swoboda, K. J. (2007). Spinal muscular atrophy genetic counseling access and genetic knowledge: parents' perspectives. Journal of child neurology, 22(8), 1019-1026. https://doi.org/10.1177/0883073807305672
• Milner, J., Bungay, C., Jellinek, D., Hall, D. (1996). Needs of disabled children and their families. Archives of disease in childhood, 75(5), 399-404. https://doi.org/10.1136/adc.75.5.399
• Memari, A. H., Panahi, N., Ranjbar, E., Moshayedi, P., Shafiei, M., Kordi, R., et al. (2015). Children with autism spectrum disorder and patterns of participation in daily physical and play activities. Neurology research international. https://doi.org/10.1155/2015/531906
• Pianosi, P. T., & Davis, H. S. (2004). Determinants of physical fitness in children with asthma. Pediatrics, 113(3), 225-229. https://doi.org/10.1542/peds.113.3.e225
• Read, J., Kinali, M., Muntoni, F., Weaver, T., Garralda, M. E. (2011). Siblings of young people with Duchenne muscular dystrophy–a qualitative study of impact and coping. European journal of paediatric neurology, 15(1), 21-28. https://doi.org/10.1080/0963828031000137081
• Rom Perenboom, J. M., & Astrid Chorus, M. J. (2003). Measuring participation according to the International Classification Of Functioning, Disability And Health (ICF). Disability and Rehabilitation, 25 (11-12), 577-58. https://doi.org/10.1080/0963828031000137081
• Schneidert, M., Hurst, R., Miller, J., Ustun, B. (2003). The role of environment in the International Classification of Functioning, Disability and Health (ICF). Disability and rehabilitation, 25(11-12), 588-595. https://doi.org/10.1080/0963828031000137090
• Scott, J. T., Prictor, M., Harmsen, M., Broom, A., Entwistle, V. A., Sowden, A. J., et al. (2003). Interventions for improving communication with children and adolescents about a family member's cancer. Cochrane Database of Systematic Reviews, (4). https://doi.org/10.1002/14651858.cd004511
• Tieman, B. L., Palisano, R. J., Gracely, E. J., Rosenbaum, P. L. (2004). Gross motor capability and performance of mobility in children with cerebral palsy: a comparison across home, school, and outdoors/community settings. Physical therapy, 84(5), 419-429. https://doi.org/10.1093/ptj/84.5.419
• Tough, H., Siegrist, J., Fekete, C. (2017). Social relationships, mental health and wellbeing in physical disability: a systematic review. BMC public health, 17(1), 1-18. https://doi.org/10.1186/s12889-017-4308-6
• Van Riper, M. (1999). Maternal perceptions of family–provider relationships and well‐being in families of children with Down syndrome. Research in Nursing & Health, 22(5), 357-368. https://doi.org/10.1002/(SICI)1098-240X(199910)22:5%3C357::AID-NUR2%3E3.0.CO;2-Q
• Webb, C. (2005). Parents’ perspectives on coping with Duchenne muscular dystrophy. Child: care, health and development, 31(4), 385-396. https://doi.org/10.1111/j.1365-2214.2005.00518.x
• Wiart, L., Ray, L., Darrah, J., Magill-Evans, J. (2010). Parents' perspectives on occupational therapy and physical therapy goals for children with cerebral palsy. Disability and rehabilitation, 32(3), 248-258. https://doi.org/10.3109/09638280903095890