Comparison of depression, anxiety, and health related quality of life levels of parents of children with neuromuscular diseases

Öz

Purpose: In this study, the differences in psychological status of the parents of children with moderate disability, associated with neuromuscular diseases (ND), were determined. Methods: The parents of 35 children, who had ND, were included in the study. The mother was the primary caregiver in all cases. The Wee-Functional Independence Measurement (Wee-FIM) was used to evaluate the dependence of children. Parents’ anxiety, depression and Health Related Quality of Life (HRQOL) levels were assessed using the Beck Depression Inventory (BDI), the State-Trait Anxiety Inventory (STAI) and the Nottingham Health Profile (NHP). Results: Mothers’ trait anxiety levels were higher than fathers. State anxiety levels were similar between two groups (p>0.05). Mothers’ had worse HRQOL, and they were more depressive (p<0.05). Mothers’ HRQOL was correlated with the time spent with the child, BDI and trait anxiety scores of mothers, age and education status of mothers and the FIM score of the children (p<0.05). Fathers’ HRQOL was correlated with time spent with the child, BDI and state anxiety scores of fathers (p<0.05). Fathers of sons had worse HRQOL, than fathers of daughters (p<0.05). Conclusion: Mothers and fathers of children with ND presented several differences with respect to the impact of their caregiving role on psychological status. The vulnerable fathers as well as mothers should be identified, and psychological support should be provided in time. Fathers’ active participation in the care may favorably affect the mothers’ HRQOL

Anahtar Kelimeler

• Disabled children
• Parents
• Neuromuscular disease
• Quality of life

Nöromusküler hastalığı olan çocukların ebeveynlerinin depresyon, anksiyete

Öz

Amaç: Bu çalışma nöromüsküler hastalığa (NH) bağlı orta düzeyde yetiyitimi olan çocukların, ebeveynlerinin psikolojik durumlarını karşılaştırmak amacıyla yapıldı. Yöntem: Bu çalışmaya, NH’ı olan 35 çocuğun ebeveyni alındı. Anne tüm olgularda birincil bakımverendi. Çocukların bağımlılık düzeylerini değerlendirmek amacıyla Wee-Fonksiyonel Bağımsızlık Ölçeği (Wee-FIM) kullanıldı. Ebeveynlerin depresyon, anksiyete ve sağlıkla ilgili yaşam kalitesi (SİYK) düzeyleri, Beck Depresyon Ölçeği (BDÖ), Durumluk/Sürekli Kaygı Envanteri (DSKE) ve Nottingham Sağlık Profili (NSP) kullanılarak değerlendirildi. Sonuçlar: Annelerin sürekli kaygı düzeyleri babalardan yüksekti. İki grubun durumluk kaygı düzeyleri ise benzer bulundu (p>0.05). SİYK annelerde daha kötüydü ve annelerin depresyon düzeyleri babalardan daha yüksekti (p<0.05). Annelerin SİYK’si, Wee-FIM puanı, çocuk ile harcanan zaman, anne yaşı ve eğitim durumu, BDÖ ve sürekli kaygı puanı ile ilişki gösterdi (p<0.05). Babaların SİYK’si ile çocukla beraber olunan süre, BDÖ ve durumluk kaygı puanı arasında ilişki saptandı (p<0.05). Oğulları olan babalarda SİYK, kızları olan babalara göre daha kötüydü (p<0.05). Tartışma: Anne ve babalar, NH olan çocuklarına bakım vermenin psikolojik durumlarına etkisi açısından çeşitli farklılıklar göstermektedir. Çeşitli duyarlılıkları olan anneler ve özellikle de babalar belirlenmeli ve gecikmeden gerekli psikolojik destek almaları sağlanmalıdır. Babaların çocukların bakımına aktif olarak katılması, annenin SİYK’sini olumlu etkileyebilir

Anahtar Kelimeler

• Yeti yitimi olan çocuklar
• Ebeveyn
• Nöromusküler hastalık
• Yaşam kalitesi

Kaynakça

1. Mc Donald CM. Physical activity, health impairments, and disability in neuromuscular diseases. Am J Phys Med Rehabil. 2002;81:108-120.
2. Jung-won L, Zebrack B. Caring for family members with chronic illness. A critical review of caregiver literature. Health Qual Life Out. 2004;17:50.
3. Glozman JM. Quality of life of caregivers. J Neurophysiol. 2004;14:183-196.
4. Chen JY, Clark MJ. Family function in families of children with duchenne muscular dystrophy. Fam Community Health. 2007;30:296–304.
5. Yılmaz Ö, Akı E, Düger T, et al. Susceptibility of mothers of children with muscular dystrophy to chronic back pain. J Back Musculoskelet. 2004;17:51- 55.
6. Rentinck ICM, Ketelaar M, Jongmans MJ et al. Parents of children with cerebral palsy: a review of factors related to the process of adaptation. Child Care Health Dev. 2006;33:161–169.
7. Pharez V, Lopez E, Fields S, et al. Are fathers involved in pediatric psychology research and treatment? J Pediatr Psychol. 2005;30:631-643.
8. Pelchat D, Lefebvre H, Levert M J. Gender differences and similarities in the experience of parenting a child with a health problem: Current state of knowledge. J Child Health Care. 2007;11:112–131.

9. Katz S. Gender differences in adapting to a child’s chronic illness: A causal model. J Ped Nurs. 2002;17:257–269.
10. Ottenbacher KJ, Msall ME, Lyon N, et al. The WeeFIM instrument: it’s utility in detecting change in children with developmental disabilities. Arch Phys Med Rehabil. 2000;81:1317-1326.
11. Beck AT, Ward CH, Mendelson WM, et al. An inventory for measuring depression. Arch Gen Psychiatry. 1961;4:561-571.
12. Oner N. The validity study of adapted Turkish version of an anxiety inventory: an abstract of a research. J Psychol. 1978;1:12-17.
13. Küçükdeveci A, McKenna SP, Kutlay S et al. The development and psychometric assessment of the Turkish version of the Nottingham Health Profile. Int J Rehabil Res. 2000;23:31–38.
14. Abi Daoud MS, Dooley JM, Gordon KE. Depression in parents of children with duchenne muscular dystrophy. Pediatr Neurol. 2004;31:16-19.
15. Pelchat D, Lefebvre H, Perreault M. Differences and similarities between mothers’and fathers’ experiences of parenting a child with a disability. J Child Health Care. 2003;7:231–247.
16. Bristol MM, Galagher JJ, Schopler E. Mothers and fathers of young developmentally disabled and non- disabled boys: adaptation and spousal support. Dev Psychol. 1988;24:441–451.
17. Krauss MW. Child-related and parenting stress: similarities and differences between mothers and fathers of children with disabilities. Am. J Ment Retard. 1993;97:393–404.
18. Pelchat D, Bisson J, Ricard N, et al. The longitudinal effects of an early family intervention program on the adaptation of families of children with a disability. Int J Nurs Stud. 1999;36:465–477.
19. Heath DT, Orthner DK. Stress and adaptation among male and female single parents. J Fam Issues. 1999;20:557-587.
20. Karaduman A, Yılmaz Ö, Tüzün E, et al. A 30. Beckman PJ. Comparison of mothers’ and fathers’ comparison of quality of life in children with cerebral palsy and neuromuscular diseases. Fizyoter Rehabil. 2010;21:3-10.
21. Lim J, Zebrack B. Caring for family members with chronic physical illness: a critical review of caregiver literature. Health Qual Life Outcomes. 2004;2:50.
22. Uyaroglu AK, Bodur S. Anxiety of parents of mentally handicapped children and affects of 32. Compas BE, Williams RA. Stress, coping, and informing on anxiety level. TAF Prev Med Bull. 2009;8:405-412.
23. Heaman DJ. Perceived stressors and coping strategies of parents who have children with 33. Kronenberger WG, Thompson RJ. Medical stress, developmental disabilities: a comparison of mothers and fathers. J Pediatr Nurs. 1995;10:311-320.
24. Hornby G. Effects on fathers of children with Down Syndrome. J Child Fam Stud. 1995;4:239-255.
25. Trute B. Gender differences in the psychological adjustment of parents of young, developmentally disabled children. J Child Psychol Psyc. 1995;36:1225–1242.
26. King GA, King SM, Rosenbaum PL. How mothers and fathers view professional caregiving for children with disabilities. Dev Med Child Neurol. 1996;38:397-407. perceptions of the effects of young children with and without disabilities. Am. J Ment Retard. 1991;95:585- 595.