The Relationship Between Care Burden, Psychological Status, and Quality of Life in Parents Who Have a Child Diagnosed with Cerebral Palsy

Abstract

Purpose: It is known that the care burden of parents who care child diagnosed with cerebral palsy (CP) is higher than that of the parents who care for a healthy child. The study aim was to examine the relationship between this caregiving burden (CB) and parents' psychological state (PS) and quality of life (QoL).

Materials and Methods: The study is a prospective cross-sectional study completed with 101 parents of children with CP. The CB, PS, and QoL of parents were measured with Zarit Caregiver Burden Scale, Beck Depression Inventory, and Short Form-36, respectively. In addition, the QoL of CP was assessed with the Katz Activities of Daily Living Scale and functionality was meas-ured with the Pediatric Functional Independence Measure.

Results: The majority of caregivers were mothers (90.09%). The daily living activities and functionality of the children were moderate levels. While the CB of the parents was moderate to severe, their PS was mildly depressed. There was a positive moderate (r=0.472, p<0.001) correlation between CB and PS, and a negative moderate correlation with physical function subdimension of QoL (r= -0.475, p<0.001). According to the multiple regression model, the daily living activity levels of the children and the PS of the parents explain 27.4% of the CB.

Conclusion: CB of the parents who care for the child with CP affects their psychological health and their QoL. It would be more beneficial if care plans and services are inclusive not only for children with CP but also for parents who care for them.

Keywords

• care burden
• Cerebral palsy
• depression

Serebral Palsili Çocuğu Olan Ebeveynlerde Bakım Yükü, Psikolojik Durum ve Yaşam Kalitesi İlişkisi

Abstract

Amaç: Serebral Palsili (SP) bir çocuğa bakım veren ebeveynlerin bakım yüklerinin sağlıklı bir çocuğa bakım veren ebeveynlerden fazla olduğu bilinmektedir. Bu çalışma ile birincil bakım veren ebeveynlerin bakım yükü (BY) ile psikolojik durumları (PD) ve yaşam kaliteleri (YK) arasındaki ilişkinin incelenmesi hedeflenmiştir.

Araçlar ve Yöntem: Çalışma, SP'li çocuğa sahip 101 ebeveyn ile prospektif olarak gerçekleştirilen bir kesitsel çalışmadır. Bu çalışmada ebeveynlerin BY, PD ve YK sırasıyla Zarit Bakım Verme Yükü Ölçeği, Beck Depresyon Envanteri ve Kısa Form-36 ile ölçüldü. Ayrıca SP'li çocukların YK’sı Katz Günlük Yaşam Aktiviteleri Ölçeği ile fonksiyonellikleri ise Pediatrik Fonksiyonel Bağımsızlık Ölçümü ile değerlendirildi.

Bulgular: Analiz sonuçlarına göre bakım verenlerin büyük çoğunluğu annelerden oluşmaktaydı (%90.09). Değerlendirmeler sonrasında çocukların günlük yaşam aktiviteleri (GYA) ve fonksiyonellik seviyeleri orta düzeyde bulundu. Bununla paralel olarak ebeveynlerin bakım yükleri orta-ciddi düzeyde iken psikolojik durumları hafif depresif olduğu görüldü. Ebeveynlerin BY ile PD arasında orta düzey (r=0.472, p<0.001), YK alt boyutu olan fiziksel fonksiyon ile negatif yönlü orta düzey (r=-0.475, p<0.001) bir korelasyon vardı. Çoklu regresyon modeline bakıldığında ise çocukların GYA seviyeleri ve ebeveynlerin PD durumları bakım yükünün %27.4'ünü açıklamaktadır.

Sonuç: SP'li çocuğa bakım veren ebeveynlerin bakım yüküne bağlı olarak psikolojik sağlıkları olumsuz yönde etkilenmekte ve yaşam kaliteleri düşmektedir. Bu sebeple bakım planlamaları ve hizmetleri sadece SP'li çocuklara yönelik değil bakım veren ebeveynleri de kapsayıcı şekilde olması faydalı olacaktır.

Keywords

• bakım yükü
• depresyon
• Serebral Palsi

References

1. 1. Xu N, Matsumoto H, Hyman J, Roye B, Kim H, Roye DP. Evaluation of assessment of caregiver experience with neuromuscular disease: Reliability and responsiveness of a new caregiver-reported outcome measure in patients with cerebral palsy. Transl Pediatr. 2020;9(4):507-512.
2. 2. Vitrikas K, Dalton H, Breish D. Cerebral palsy: An overview. Am Fam Physician. 2020;101(4):213-220.
3. 3. Durà-Vilà G, Dein S, Hodes M. Children with intellectual disability: A gain not a loss: Parental beliefs and family life. Clin Child Psychol Psychiatry. 2010;15(2):171-184.
4. 4. Maimani D, Alhumedi N, Alghamdi A. The Prevalence of Psychological Morbidities and the Determinant of care givers of children with intellectual disabilities, in specialized centers in Jeddah 2018. J Prev Med Holist Heal. 2019;5(1):27-31.
5. 5. Jafari H, Ebrahimi A, Aghaei A, Khatony A. The relationship between care burden and quality of life in caregivers of hemodialysis patients. BMC Nephrol. 2018;19(1):1-8.
6. 6. Park EY, Nam SJ. Time burden of caring and depression among parents of individuals with cerebral palsy. Disabil Rehabil. 2019;41(13):1508-1513.
7. 7. Naeem F, Arif S, Asghar A, Mahmood Z. Psychosocial stressors, burnout and mental health problems in caregivers of children with cerebral palsy. J Postgrad Med Inst. 2018;32(4):372-377.
8. 8. Toledano-Toledano F, Moral de la Rubia J. Factors associated with anxiety in family caregivers of children with chronic diseases. Biopsychosoc Med. 2018;12(1):1-10.

9. 9. Pelchat D, Ricard N, Bouchard JM, et al. Adaptation of parents in relation to their 6-month-old infant’s type of disabi-lity. Child Care Health Dev. 1999;25(5):377-398.
10. 10. Lee MH, Matthews AK, Park C. Determinants of Health-related Quality of Life Among Mothers of Children With Cerebral Palsy. J Pediatr Nurs. 2019;44:1-8.
11. 11. Albayrak I, Biber A, Çalışkan A, Levendoglu F. Assessment of pain, care burden, depression level, sleep quality, fati-gue and quality of life in the mothers of children with cerebral palsy. J Child Heal Care. 2019;23(3):483-494.
12. 12. Avşaroğlu S, Okutan H. Investigation of Life Satisfaction Optimism and Psychological Symptom Levels of Parents with Disabled Children. MANAS Sos Araştırmalar Derg. 2018;7(1):59-76.
13. 13. Pruitt DW, Tsai T. Common Medical Comorbidities Associated with Cerebral Palsy. Phys Med Rehabil Clin N Am. 2009;20(3):453-467.
14. 14. Özşenol F, Işıkhan V, Ünay B, Aydın Hİ, Akın R, Gökçay E. Engelli Çocuğa Sahip Ailelerin İşlevlerinin Değerlendirilmesi. Gulhane Med J. 2003;45(2):156-164.
15. 15. Başaran S, Güzel R, Sarpel T. Quality of Life and Health Outcome Assessment Questionnaires. Romatizma. 2005;20(1):55-63.
16. 16. İçağasıoğlu A, Karatekin BD, Mesci E, Yumusakhuylu Y, Murat S, Yasin Ş. Assessment of adult patients with cerebral palsy. Turkish J Phys Med Rehabil. 2021;66(4):429-435.
17. 17. Sood S, Jafferany M, Vinaya kumar S. Depression, psychiatric comorbidities, and psychosocial implications associated with acne vulgaris. J Cosmet Dermatol. 2020;19(12):3177-3182.
18. 18. Özer N, Yurttaş A, Akyıl RÇ. Psychometric Evaluation of the Turkish Version of the Zarit Burden Interview in Family Caregivers of Inpatients in Medical and Surgical Clinics. J Transcult Nurs. 2012;23(1):65-71.
19. 19. Sel SA, Günel MK, Şengelen M, Hayran M. Serebral Palsili Çocukların Ebeveynlerinin Ev Programına Uyumuna Etki Eden Faktörlerin İncelenmesi: Bir Ölçek Geliştirme Çalışması. Turk J Physiother Rehabil. 2020;31(2):304-314.
20. 20. Koçyiğit H, Aydemir Ö, Fişek G. ve ark. Kısa form-36 (SF-36)’nın Türkçe versiyonunun güvenilirliği ve geçerliliği. İlaç Tedavi Derg. 1999;12(2):102-106.
21. 21. Katz S, Ford AB, Moskowitz RW, Jackson BA, Jaffe MW. Studies of Illness in the Aged: The Index of ADL: A Stan-dardized Measure of Biological and Psychosocial Function. JAMA J Am Med Assoc. 1963;185(12):914-919.
22. 22. Tur BS, Küçükdeveci AA, Kutlay Ş, Yavuzer G, Elhan AH, Tennant A. Psychometric properties of the WeeFIM in children with cerebral palsy in Turkey. Dev Med Child Neurol. 2009;51(9):732-738.
23. 23. Yığman F, Aykın Yığman Z, Ünlü Akyüz E. Investigation of the relationship between disease severity, caregiver burden and emotional expression in caregivers of children with cerebral palsy. Ir J Med Sci. 2020;189(4):1413-1419.
24. 24. Wu J, Zhang J, Hong Y. Quality of life of primary caregivers of children with cerebral palsy: a comparison between mother and grandmother caregivers in Anhui province of China. Child Care Health Dev. 2017;43(5):718-724.
25. 25. Gugała B, Penar-Zadarko B, Pięciak-Kotlarz D, et al. Assessment of anxiety and depression in polish primary parental caregivers of children with cerebral palsy compared to a control group, as well as identification of selected predictors. Int J Environ Res Public Health. 2019;16(21):4173.
26. 26. Masefield SC, Prady SL, Sheldon TA, Small N, Jarvis S, Pickett KE. The Caregiver Health Effects of Caring for Young Children with Developmental Disabilities: A Meta-analysis. Matern Child Health J. 2020;24(5):561-574.
27. 27. Gugała B. Caregiver burden versus intensity of anxiety and depression symptoms in parents of children with cerebral palsy as well as factors potentially differentiating the level of burden: A cross-sectional study (Poland). BMJ Open. 2021;11(6):e036494.
28. 28. Haugstvedt A, Wentzel-Larsen T, Rokne B, Graue M. Perceived family burden and emotional distress: Similarities and differences between mothers and fathers of children with type 1 diabetes in a population-based study. Pediatr Diabetes. 2011;12(2):107-114.
29. 29. 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):761-767.
30. 30. Bektas İ, Kır M, Yıldız K, Genç Z, Bektas M, Ünal N. Symptom Frequency in Children with Congenital Heart Disease and Parental Care Burden in Predicting the Quality of Life of Parents in Turkey. J Pediatr Nurs. 2020;53:e211-e216.