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Turkish Version of Caregiver Difficulties Scale for the Children with Cerebral Palsy: A Study of Reliability and Validity

Year 2024, Volume: 6 Issue: 1, 124 - 131, 31.01.2024
https://doi.org/10.37990/medr.1375252

Abstract

Aim: The purpose of this study is to evaluate the validity and reliability of the Turkish version of the Caregiver Difficulties Scale (CDS).
Material and Method: The CDS was translated into Turkish (TR-CDS) and 116 caregivers of children with Cerebral Palsy (CP) (mean age: 37.20±10.36 years) completed the TR-CDS. Impact on Family Scale (IPFAM), World Health Organization Quality of Life–Brief Form (WHOQOL-BREF), Fatigue Severity Scale (FSS), Nottingham Health Profile (NHP), Beck Depression Inventory-II (BDI-II), and subscales and total impact score of TR-CDS were used for the construct validity. The internal consistency was assessed using Cronbach's alpha, and the test-retest reliability was assessed using the Intraclass Correlation Coefficient (ICC).
Results: For construct validity, all subscales of TR-CDS showed negative correlation with the WHOQOL-BREF and showed positive correlation with the IPFAM, FSS, NHP, and BDI-II. ICC the results of test-retest reliability analysis were for TR-CDS (total)=0.879, impact on self (CDS-IS)=0.843, support for caregiving (CDS-SC)=0.759, social and economic difficulties (CDS-S&E)=0.827, and concern for the child (CDS-CC)=0.707. A value of 0.936 was found for internal consistency.
Conclusion: It was revealed that the TR-CDS was a valid and reliable tool for the caregivers of children with CP.

Ethical Statement

The ethical approval of the study was obtained from XXXXX University Clinical Research Ethics Committee (Decision No:2019/01).

References

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  • Park, E-Y, Nam SJ. Time burden of caring and depression among parents of individuals with cerebral palsy. Disabil Rehabil. 2019;41:1508-13.
  • Vogts N, Mackey AH, Ameratunga S, Stott NS. Parent-perceived barriers to participation in children and adolescents with cerebral palsy. J Paediatr Child Health. 2010;46:680-5.
  • Basaran A, Karadavut KI, Uneri S, et al. 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;49:815-22.
  • Schaible B, Colquitt G, Caciula MC, et al. Comparing impact on the family and insurance coverage in children with cerebral palsy and children with another special healthcare need. Child Care Health Dev. 2018;44:370-7.
  • Tuna H, Unalan H, Tuna F, Kokino S. Quality of life of primary caregivers of children with cerebral palsy: a controlled study with Short Form-36 questionnaire. Dev Med Child Neurol. 2004;46:647-8.
  • Beaton DE, Bombardier C, Guillemin F, Ferraz MB. Guidelines for the process of cross-cultural adaptation of self-report measures. Spine. 2000;25:3186-91.
  • Majnemer A, Shevell M, Law M, et al. Indicators of distress in families of children with cerebral palsy. Disabil Rehabil. 2012;34:1202-7.
  • Farajzadeh A, Amini M, Maroufizadeh S, Wijesinghe CJ. Caregiver difficulties scale (CDS): translation and psychometric evaluation among iranian mothers of cerebral palsy children. Occup Ther Health Care. 2018;32:28-43.
  • Wijesinghe C, Fonseka P, Hewage C. The development and validation of an instrument to assess caregiver burden in cerebral palsy: caregiver difficulties scale. Ceylon Med J. 2013;58:162-7.
  • Bek N, Simsek IE, Erel S, et al. Turkish version of impact on family scale: a study of reliability and validity. Health Qual Life Outcomes. 2009;7:4.
  • Seng BK, Luo N, Ng WY, et al. Validity and reliability of the zarit burden interview in assessing caregiving burden. Ann Acad Med Singap. 2010;39:758-63.
  • Guillemin F, Bombardier C, Beaton D. Cross-cultural adaptation of health-related quality of life measures: literature review and proposed guidelines. J Clin Epidemiol. 1993;46:1417-32.
  • Akvardar Y, Akdede BB, Özerdem A, et al. Assessment of quality of life with the WHOQOL-BREF in a group of Turkish psychiatric patients compared with diabetic and healthy subjects. Psychiatry Clin Neurosci. 2006;60:693-9.
  • Alonso J, Anto JM, Moreno C. Spanish version of the Nottingham Health Profile: translation and preliminary validity. Am J Public Health. 1990;80:704-8.
  • Armutlu K, Korkmaz NC, Keser I, et al. The validity and reliability of the Fatigue Severity Scale in Turkish multiple sclerosis patients. Int J Rehabil Res. 2007;30:81-5.
  • Storch EA, Roberti JW, Roth DA. Factor structure, concurrent validity, and internal consistency of the beck depression inventory—second edition in a sample of college students. Depress Anxiety. 2004;9:187-9.
  • Yildiz N, Topuz O, Gungen GO, et al. Health-related quality of life (Nottingham Health Profile) in kee osteoarthritis: correlation with clinical variables and self-reported disability. Rheumatol Int. 2010;30:1595-600.
  • Kucukdeveci AA, McKenna SP, Kutlay S, et al. The development and psychometric assessment of the Turkish version of the nottingham health profile. Int J Rehabilitation Res. 2000;23:31-8.
  • Gencay-Can A, Can SS. Validation of the Turkish version of the fatigue severity scale in patients with fibromyalgia. Rheumatol Int. 2012;32:27-31.
  • Uslu RI, Kapci EG, Oncu B, et al. Psychometric properties and cut-off scores of the Beck Depression Inventory-II in Turkish adolescents. J Clin Psychol Med Settings. 2008;15:225-33.
  • Eser E, Fidaner H, Fidaner C, et al. Psychometric properties of the WHOQOL-100 and WHOQOL-BREF. J Psychiatry Psychol Psychopharmacol. 1999;7:23-40.
  • Buyukozturk S. Factor analysis: basic concepts and using to development scale. Kuram Ve Uygulamada Eğitim Yönetimi. 2002;32:470-83.
  • Mishel MH. Methodological Studies: Instrument Development. In: Brink PJ, Wood MJ, eds, Advenced design in nursing research, 2nd edition, New Delhi: SAGE Publications, 1998;235-86.
  • Wijesinghe CJ, Cunningham N, Fonseka P, et al. Factors associated with caregiver burden among caregivers of children with cerebral palsy in Sri Lanka. Asia Pac J Public Health. 2015;27:85-95.
  • Simsek IE, Simsek TT, Erel S, Atasavun Uysal S. Factors affecting health related quality of life and depression levels of mothers in families having children with chronic disabilities. HK J Paediatr (New Series). 2020;25:71-8.
  • Garip Y, Ozel S, Tuncer OB, et al. Fatigue in the mothers of children with cerebral palsy. Disabil Rehabil. 2017;39:757-62.
  • Khanna AK, Prabhakaran A, Patel P, et al. Social, psychological and financial burden on caregivers of children with chronic illness: a cross-sectional study. Indian J Pediatr. 2015;82:1006-11.
  • Pinquart M, Sorensen S. Associations of stressors and uplifts of caregiving with caregiver burden and depressive mood: a meta-analysis. J Gerontol B Psychol Sci Soc Sci. 2003;58:112-28.
  • Carona C, Silva N, Crespo C, Canavarro MC. Caregiving burden and parent–child quality of life outcomes in neurodevelopmental conditions: the mediating role of behavioral disengagement. J Clin Psychol Med Settings. 2014;21:320-8.
  • Dambi JM, Jelsma J, Mlambo T, et al. 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.
  • Angold A, Costello EJ. The child and adolescent psychiatric assessment (CAPA). J Am Acad Child Adolesc Psychiatry. 2000;39:39-48.
  • Aybay C, Erkin G, Elhan AH, et al. ADL assessment of nondisabled Turkish children with the WeeFIM instrument. Am J Phys Med Rehabil. 2007;86:176-82.
  • Ruperto N, Ravelli A, Pistorio A, et al. Paediatric Rheumatology International Trials Organisation. Cross-cultural adaptation and psychometric evaluation of the Childhood Health Assessment Questionnaire (CHAQ) and the Child Health Questionnaire (CHQ) in 32 countries. Review of the general methodology. Clin Exp Rheumatol. 2001;19:S1-9.
  • Schmidt S, Bullinger M. Current issues in cross-cultural quality of life instrument development. Arch Phys Med Rehabil. 2003;84:S29-34.
  • Tabachnick BG, Fidell LS, Ullman JB. Using multivariate statistics (Vol. 5): Pearson Boston, MA. 2007.
Year 2024, Volume: 6 Issue: 1, 124 - 131, 31.01.2024
https://doi.org/10.37990/medr.1375252

Abstract

References

  • Ones K, Yilmaz E, Cetinkaya B, Caglar N. Assessment of the quality of life of mothers of children with cerebral palsy (primary caregivers). Neurorehabil Neural Repair. 2005;19:232-7.
  • Park, E-Y, Nam SJ. Time burden of caring and depression among parents of individuals with cerebral palsy. Disabil Rehabil. 2019;41:1508-13.
  • Vogts N, Mackey AH, Ameratunga S, Stott NS. Parent-perceived barriers to participation in children and adolescents with cerebral palsy. J Paediatr Child Health. 2010;46:680-5.
  • Basaran A, Karadavut KI, Uneri S, et al. 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;49:815-22.
  • Schaible B, Colquitt G, Caciula MC, et al. Comparing impact on the family and insurance coverage in children with cerebral palsy and children with another special healthcare need. Child Care Health Dev. 2018;44:370-7.
  • Tuna H, Unalan H, Tuna F, Kokino S. Quality of life of primary caregivers of children with cerebral palsy: a controlled study with Short Form-36 questionnaire. Dev Med Child Neurol. 2004;46:647-8.
  • Beaton DE, Bombardier C, Guillemin F, Ferraz MB. Guidelines for the process of cross-cultural adaptation of self-report measures. Spine. 2000;25:3186-91.
  • Majnemer A, Shevell M, Law M, et al. Indicators of distress in families of children with cerebral palsy. Disabil Rehabil. 2012;34:1202-7.
  • Farajzadeh A, Amini M, Maroufizadeh S, Wijesinghe CJ. Caregiver difficulties scale (CDS): translation and psychometric evaluation among iranian mothers of cerebral palsy children. Occup Ther Health Care. 2018;32:28-43.
  • Wijesinghe C, Fonseka P, Hewage C. The development and validation of an instrument to assess caregiver burden in cerebral palsy: caregiver difficulties scale. Ceylon Med J. 2013;58:162-7.
  • Bek N, Simsek IE, Erel S, et al. Turkish version of impact on family scale: a study of reliability and validity. Health Qual Life Outcomes. 2009;7:4.
  • Seng BK, Luo N, Ng WY, et al. Validity and reliability of the zarit burden interview in assessing caregiving burden. Ann Acad Med Singap. 2010;39:758-63.
  • Guillemin F, Bombardier C, Beaton D. Cross-cultural adaptation of health-related quality of life measures: literature review and proposed guidelines. J Clin Epidemiol. 1993;46:1417-32.
  • Akvardar Y, Akdede BB, Özerdem A, et al. Assessment of quality of life with the WHOQOL-BREF in a group of Turkish psychiatric patients compared with diabetic and healthy subjects. Psychiatry Clin Neurosci. 2006;60:693-9.
  • Alonso J, Anto JM, Moreno C. Spanish version of the Nottingham Health Profile: translation and preliminary validity. Am J Public Health. 1990;80:704-8.
  • Armutlu K, Korkmaz NC, Keser I, et al. The validity and reliability of the Fatigue Severity Scale in Turkish multiple sclerosis patients. Int J Rehabil Res. 2007;30:81-5.
  • Storch EA, Roberti JW, Roth DA. Factor structure, concurrent validity, and internal consistency of the beck depression inventory—second edition in a sample of college students. Depress Anxiety. 2004;9:187-9.
  • Yildiz N, Topuz O, Gungen GO, et al. Health-related quality of life (Nottingham Health Profile) in kee osteoarthritis: correlation with clinical variables and self-reported disability. Rheumatol Int. 2010;30:1595-600.
  • Kucukdeveci AA, McKenna SP, Kutlay S, et al. The development and psychometric assessment of the Turkish version of the nottingham health profile. Int J Rehabilitation Res. 2000;23:31-8.
  • Gencay-Can A, Can SS. Validation of the Turkish version of the fatigue severity scale in patients with fibromyalgia. Rheumatol Int. 2012;32:27-31.
  • Uslu RI, Kapci EG, Oncu B, et al. Psychometric properties and cut-off scores of the Beck Depression Inventory-II in Turkish adolescents. J Clin Psychol Med Settings. 2008;15:225-33.
  • Eser E, Fidaner H, Fidaner C, et al. Psychometric properties of the WHOQOL-100 and WHOQOL-BREF. J Psychiatry Psychol Psychopharmacol. 1999;7:23-40.
  • Buyukozturk S. Factor analysis: basic concepts and using to development scale. Kuram Ve Uygulamada Eğitim Yönetimi. 2002;32:470-83.
  • Mishel MH. Methodological Studies: Instrument Development. In: Brink PJ, Wood MJ, eds, Advenced design in nursing research, 2nd edition, New Delhi: SAGE Publications, 1998;235-86.
  • Wijesinghe CJ, Cunningham N, Fonseka P, et al. Factors associated with caregiver burden among caregivers of children with cerebral palsy in Sri Lanka. Asia Pac J Public Health. 2015;27:85-95.
  • Simsek IE, Simsek TT, Erel S, Atasavun Uysal S. Factors affecting health related quality of life and depression levels of mothers in families having children with chronic disabilities. HK J Paediatr (New Series). 2020;25:71-8.
  • Garip Y, Ozel S, Tuncer OB, et al. Fatigue in the mothers of children with cerebral palsy. Disabil Rehabil. 2017;39:757-62.
  • Khanna AK, Prabhakaran A, Patel P, et al. Social, psychological and financial burden on caregivers of children with chronic illness: a cross-sectional study. Indian J Pediatr. 2015;82:1006-11.
  • Pinquart M, Sorensen S. Associations of stressors and uplifts of caregiving with caregiver burden and depressive mood: a meta-analysis. J Gerontol B Psychol Sci Soc Sci. 2003;58:112-28.
  • Carona C, Silva N, Crespo C, Canavarro MC. Caregiving burden and parent–child quality of life outcomes in neurodevelopmental conditions: the mediating role of behavioral disengagement. J Clin Psychol Med Settings. 2014;21:320-8.
  • Dambi JM, Jelsma J, Mlambo T, et al. 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.
  • Angold A, Costello EJ. The child and adolescent psychiatric assessment (CAPA). J Am Acad Child Adolesc Psychiatry. 2000;39:39-48.
  • Aybay C, Erkin G, Elhan AH, et al. ADL assessment of nondisabled Turkish children with the WeeFIM instrument. Am J Phys Med Rehabil. 2007;86:176-82.
  • Ruperto N, Ravelli A, Pistorio A, et al. Paediatric Rheumatology International Trials Organisation. Cross-cultural adaptation and psychometric evaluation of the Childhood Health Assessment Questionnaire (CHAQ) and the Child Health Questionnaire (CHQ) in 32 countries. Review of the general methodology. Clin Exp Rheumatol. 2001;19:S1-9.
  • Schmidt S, Bullinger M. Current issues in cross-cultural quality of life instrument development. Arch Phys Med Rehabil. 2003;84:S29-34.
  • Tabachnick BG, Fidell LS, Ullman JB. Using multivariate statistics (Vol. 5): Pearson Boston, MA. 2007.
There are 36 citations in total.

Details

Primary Language English
Subjects Physiotherapy
Journal Section Original Articles
Authors

Hatice Adıgüzel 0000-0001-9323-839X

Zekiye İpek Katırcı Kırmacı 0000-0001-7225-5123

Suat Erel 0000-0001-7076-7651

Nevin Ergun 0000-0001-6575-7205

Publication Date January 31, 2024
Submission Date October 15, 2023
Acceptance Date January 24, 2024
Published in Issue Year 2024 Volume: 6 Issue: 1

Cite

AMA Adıgüzel H, Katırcı Kırmacı Zİ, Erel S, Ergun N. Turkish Version of Caregiver Difficulties Scale for the Children with Cerebral Palsy: A Study of Reliability and Validity. Med Records. January 2024;6(1):124-131. doi:10.37990/medr.1375252

17741

Chief Editors

Assoc. Prof. Zülal Öner
Address: İzmir Bakırçay University, Department of Anatomy, İzmir, Türkiye

Assoc. Prof. Deniz Şenol
Address: Düzce University, Department of Anatomy, Düzce, Türkiye

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