Mothers’ experiences after single-event multilevel orthopedic surgery in cerebral palsy: A descriptive qualitative study
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Abstract
Background & Aim: Mothers with children with cerebral palsy experience various problems during the care process, especially after surgery. Since these problems of parents directly affect the care provided to the child, it is essential to evaluate the problems that families experience in this process. This study aims to explore the experiences of mothers of children with cerebral palsy and to find out how these mothers care for their children that underwent single-event multilevel orthopedic surgery due to cerebral palsy.
Methods & Materials: A descriptive phenomenological study was used to explore the life experiences of 24 participants who had children with CP. This study was performed in the Department of Orthopedics at a Training and Research Hospital in Turkey, between March and July 2015. The study was completed with the participation of 24 mothers who had children with cerebral palsy. A qualitative, face-to-face and in-depth interview technique were used for data collection. Colaizzi’s method and Professional Software for Qualitative and Mixed Methods Research 11 software were used for analysis.
Results: The mean age was 37.29±6.86. Based on the mothers’ care experiences data, three main themes were identified, namely “Be concern about the process,” “Facing the Difficulties and Coping,” “Adaptations the changing family lifestyle.”
Conclusion: The findings demonstrated that CP affects intra-family relations and functions, and contributes to various physical and mental health problems, and financial statement. We believe that the findings may help healthcare professionals to provide and plan education in the field of healthcare services in a way that helps families cope with the process successfully.
2. Çarman KB, Yarar Ç, Ekici A, Gürlevik SL, Yimencioğlu S, Koçak O, Ayvacı B, Işık İ, Arslantaş D, Yakup A. Cerebral Palsy: Sociodemographic and Clinical Features. The Medical Journal Of Haydarpaşa Numune Training and Research Hospital. 2017;57(1):6-10.
3. Sharan D. Orthopedic surgery in cerebral palsy: Instructional course lecture. Indian journal of orthopaedics. 2017 May;51(3):240.
4. Rahul M, Avinash CK, Gopakumar TS. Outcome of single event multi-level surgery in untreated spastic cerebral palsy children-A study of 143 children. Kerala J Orthopaedics. 2016; 28 (1-2):42-46.
5. Alaee N, Shahboulaghi FM, Khankeh H, Kermanshahi SM. Psychosocial challenges for parents of children with cerebral palsy: A qualitative study. Journal of Child and Family Studies. 2015 Jul 1;24(7):2147-54.
6. Çalışır H, Karabıdak SS, Karataş P, Tosun AF, Meşealan İ. Family burden and hopelessness levels in mothers of children with cerebral palsy, DEUN Faculty Electronic J. 2018; 11(2):147-56.
7. Høiness PR, Capjon H, Lofterød B. Pain and rehabilitation problems after single-event multilevel surgery including bony foot surgery in cerebral palsy: A series of 7 children. Acta orthopaedica. 2014 Dec 1;85(6):646-51.
8. Stephan-Carlier A, Facione J, Speyer E, Rumilly E, Paysant J. Quality of life and satisfaction after multilevel surgery in cerebral palsy: Confronting the experience of children and their parents. Annals of physical and rehabilitation medicine. 2014 Dec 1;57(9-10):640-52.
9. Safer VB. Factors effecting sleep quality of children with cerebral palsy and mother and depression in mother. 2017; 48(2):53-9.
10. Thomason P. Functional mobility and self‐care outcomes after multilevel orthopaedic surgery in children with cerebral palsy. Developmental Medicine & Child Neurology. 2018 May;60(5):441-2.
11. Ballantyne M, Bernardo S, Sozer A, Orava T, C McPherson A, Church P, Fehlings D. A whole new world: a qualitative investigation of parents’ experiences in transitioning their preterm child with cerebral palsy to developmental/rehabilitation services. Developmental neurorehabilitation. 2019 Feb 17;22(2):87-97.
12. World Health Organization. World Report on Disability. World Health Organizations. 2011. Available at:http:// www.who.int/disabilities/world_report/2011/report.pdf. Accessed May 30, 2019
13. Ansari NJ, Dhongade RK, Lad PS, Borade A, Yadav V, Mehetre A, Kulkarni R. Study of parental perceptions on health & social needs of children with neuro-developmental disability and it’s impact on the family. Journal of clinical and diagnostic research: JCDR. 2016 Dec;10(12):SC16.
14. Thomason P, Selber P, Graham HK. Single event multilevel surgery in children with bilateral spastic cerebral palsy: a 5 year prospective cohort study. Gait & posture. 2013 Jan 1;37(1):23-8.
15. Iversen AS, Graue M, Clare J. Parents' perspectives of surgery for a child who has cerebral palsy. Journal of Pediatric Health Care. 2009 May 1;23(3):165-72.
16. Taherdoost H. Sampling methods in research methodology; how to choose a sampling technique for research. Int J Acad Res in Manage (IJARM). 2016; 5(2):18-27
17. Etikan I, Musa SA, Alkassim RS. Comparison of convenience sampling and purposive sampling. American journal of theoretical and applied statistics. 2016 Jan 5;5(1):1-4.
18. Polit DF, Beck CT. Essentials of nursing research: Appraising evidence for nursing practice. 7th Edition, China: Wolter Kluwer/Lippincott William & Wilkins; 2010
19. Colaizzi P. Psychological research as the phenomenologist views it. In: Valle R, King M (Ed), Existential phenomenological alternative for psychology, New York: Oxford University Press, pp 48Y71; 1978
20. Marten Milbrath V, Crecencia Heckler de Siqueira H, Coelho Amestoy S. The family of children with cerebral palsy: perception about health team orientation. Text Context Nursing Florianópolis. 2012; 21 (4), 921-8.
21. Dehghan L, Dalvandi A, Rassafiani M, Hosseini SA, Dalvand H, Baptiste S. Social participation experiences of mothers of children with cerebral palsy in an Iranian context. Australian occupational therapy journal. 2015 Dec;62(6):410-9.
22. Ribeiro MF, Vandenberghe L, Prudente CO, et al. Cerebral palsy: How the child’s age and severity of impairment affect the mother’s stress and coping strategies. Ciên SaúDe Colet. 2016; 21 (10): 3203-12.
23. Kurtuncu M, Akhan LU, Yildiz H, Demirbag BC. Experiences shared through the interviews from fifteen mothers of children with cerebral palsy. Sexuality and Disability. 2015 Sep 1;33(3):349-63.
24. Nimbalkar S, Raithatha S, Shah R, Panchal DA. A qualitative study of psychosocial problems among parents of children with cerebral palsy attending two tertiary care hospitals in western India. ISRN family medicine. 2014 Feb 20;2014.
25. Viana MC, Gruber MJ, Shahly V, Alhamzawi A, Alonso J, Andrade LH, Angermeyer MC, Benjet C, Bruffaerts R, Caldas-de-Almeida JM, Girolamo GD. Family burden related to mental and physical disorders in the world: results from the WHO World Mental Health (WMH) surveys. Brazilian Journal of Psychiatry. 2013 Jun;35(2):115-25.
26. Dizmek P, Mutlu A, Kara ÖK, et al. Bir rehabilitasyon merkezine başvuran özürlü çocuklar ve ailelerinin profillerinin ve sorunlarının incelenmesi. Türkiye Klinikleri J Pediat. 2012; 21(3):137-45
27. Björquist E, Nordmark E, Hallström I. Parents’ experiences of health and needs when supporting their adolescents with cerebral palsy during transition to adulthood. Physical & occupational therapy in pediatrics. 2016 Apr 2;36(2):204-16.
28. Fernández-Alcántara M, García-Caro MP, Laynez-Rubio C, Pérez-Marfil MN, Martí-García C, Benítez-Feliponi Á, Berrocal-Castellano M, Cruz-Quintana F. Feelings of loss in parents of children with infantile cerebral palsy. Disability and health journal. 2015 Jan 1;8(1):93-101.
29. UNICEF. State of the world’s children 2013. New York (NY): UNICEF; 2013. Available at: http://www.unicef.org . Accessed May 30, 2019
30. Morrow R, Rodriguez A, King N. Colaizzi’s descriptive phenomenological method. The Psychologist. 2015; 28(8): 643-4.
| Files | ||
| Issue | Vol 7 No 2 (2020): Spring | |
| Section | Original Article(s) | |
| DOI | https://doi.org/10.18502/npt.v7i2.2737 | |
| Keywords | ||
| cerebral palsy; mothers; experiences; qualitative research; orthopedic surgery | ||
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