Investigation of the Impact of Having a Child with Special Needs on Parents and the Awareness of Parents About Their Health

Yıl 2024, Cilt: 12 Sayı: 2, 71 - 80, 07.05.2024

Duygu Mine Alataş Mustafa Cemali Elif Cimilli Başak Çağla Arslan Çiğdem Öksüz Aynur Ayşe Karaduman

https://doi.org/10.30720/ered.1381472

Öz

Objective: The aim of this study was to examine the relationship between the effect of children with special needs on their parents and parents' sleep quality, mental health, quality of life and to determine their level of knowledge about their health. Materials and Methods: Sociodemographic information of the parents who agreed to participate in the study was obtained. Impact on parents of children with special needs was evaluated using IPFAM. Parents’ of sleep quality, mental health and quality of life was evaluated with PSQI, DASS-21, NSP. The relationship between the relevant parameters was examined. Parents' level of knowledge about their health was determined with a questionnaire prepared by the researchers. Results: A positive correlation was found between the effect on parents of children with special needs and parents' sleep quality, depression, anxiety, stress level and quality of life. It was observed that parents had little knowledge about their health. Discussion: Studies that will address the impact of children with special needs on parents may consider parents' sleep quality, mental health, and quality of life. In addition, parents need to learn strategies that will enable them to protect their own health during the caregiving process.

Anahtar Kelimeler

family, mental health, quality of life, caregivers, sleep

Özel Gereksinimli Çocuğa Sahip Olmanın Ebeveyn Üzerindeki Etkisinin ve Ebeveynlerin Sağlıkları Hakkındaki Farkındalıklarının İncelenmesi

Öz

Amaç: Bu çalışmanın birincil amacı özel gereksinimli çocukların ebeveynleri üzerindeki etkisi ile ebeveynlerin uyku kalitesi, ruh sağlığı, yaşam kalitesi arasındaki ilişkiyi incelemekti. Çalışmanın ikincil amacı ise ebeveynlerin sağlıkları hakkındaki bilgi düzeylerini belirlemekti. Gereç ve Yöntem: Çalışmaya 30-55 yaş arasında 40 kadın, 6 erkek ebeveyn katıldı. Çalışmaya katılmayı kabul eden ebeveynlerin sosyodemografik bilgileri alındı. Özel gereksinimli çocukların ebeveynleri üzerindeki etkisi; Aileye Etki Ölçeği kullanılarak değerlendirildi. Ebeveynlerin sırasıyla uyku kalitesi, ruh sağlığı ve yaşam kalitesi; Pittsburgh Uyku Kalitesi İndeksi, Depresyon Anksiyete Stres Skalası, Nottingham Sağlık Profili ile değerlendirildi. İlgili parametreler arasındaki ilişki incelendi. Ebeveynlerin sağlıkları hakkındaki bilgi düzeyleri, araştırmacılar tarafından hazırlanan anket ile belirlendi. Sonuçlar: Özel gereksinimli çocukların ebeveynleri üzerindeki etkisi ile ebeveynlerin uyku kalitesi (r=0,558, p=0,001), depresyon (r=0,435, p=0,003), anksiyete (r=0,381, p=0,009), stres (r=0,455, p=0,001) düzeyi ve yaşam kalitesi (r=0,467, p=0,001) arasında pozitif yönde ilişki bulundu. Ebeveynlerin sağlıkları hakkında az bilgi düzeyine sahip oldukları görüldü. Tartışma: Özel gereksinimli çocukların ebeveynleri üzerindeki etkisini ele alacak çalışmalar ebeveynlerin uyku kalitelerini, ruh sağlıklarını ve yaşam kalitelerini göz önünde bulundurabilir. Ayrıca ebeveynlerin bakım verme sürecinde kendi sağlıklarını korumalarını sağlayacak stratejileri öğrenmeye ihtiyaçları vardır.

Anahtar Kelimeler

aile, ruh sağlığı, yaşam kalitesi, bakıcılar, uyku

Etik Beyan

Bu çalışma için Lokman Hekim Üniversitesi Bilimsel Araştırmalar Etik Kurulundan 20.09.2023 tarihli, 2023/159 karar numarası 2023148 kod numarasıyla onay alınmıştır.

Destekleyen Kurum

Yoktur

Teşekkür

Yoktur

Kaynakça

• Ağargün, M. Y. (1996). Pittsburgh uyku kalitesi indeksinin geçerliği ve güvenirliği. Türk Psikiyatri Dergisi, 7, 107-115.
• Al-Eithan, M. H., Robert, A. A., & Al-Saeed, A. H. (2010). Mood problems of mothers with disabled children in Saudi Arabia. Saudi Med J, 31(10), 1161-1165.
• Barbosa, M. A. M., Balieiro, M. M. F. G., & Pettengill, M. A. M. (2012). Family-centered care in the context of children with disabilities and their families: a reflective review. Texto & Contexto-Enfermagem, 21, 194-199. https://doi.org/10.1590/S0104-07072012000100022
• Bédard, M., Molloy, D. W., Squire, L., Dubois, S., Lever, J. A., & O'Donnell, M. (2001). The Zarit Burden Interview: a new short version and screening version. The gerontologist, 41(5), 652-657. https://doi.org/10.1093/geront/41.5.652
• Bek, N., Simsek, I., Erel, S., Yakut, Y., & Uygur, F. (2009). Turkish version of impact on family scale: a study of reliability and validity. Health Qual. Life Outcomes, 7(1), 1-7. https://doi.org/10.1186/1477-7525-7-4
• Bhopti, A., Brown, T., & Lentin, P. (2020). Opportunities for participation, inclusion and recreation in school-aged children with disability influences parent occupations and family quality of life: a mixed-methods study. Br J Occup Ther , 83(4), 204-214. https://doi.org/10.1177/0308022619883480
• Brown, F. L., Whittingham, K., Sofronoff, K., & Boyd, R. N. (2013). Parenting a child with a traumatic brain injury: experiences of parents and health professionals. Brain injury, 27(13-14), 1570-1582. https://doi.org/10.3109/02699052.2013.841996
• Buysse, D. J., Reynolds III, C. F., Monk, T. H., Berman, S. R., & Kupfer, D. J. (1989). The Pittsburgh Sleep Quality Index: a new instrument for psychiatric practice and research. Psychiatr. Res., 28(2), 193-213. https://doi.org/10.1016/0165-1781(89)90047-4
• Carnevale, F. A., Alexander, E., Davis, M., Rennick, J., & Troini, R. (2006). Daily living with distress and enrichment: the moral experience of families with ventilator-assisted children at home. Pediatrics, 117(1), e48-e60. https://doi.org/10.1542/peds.2005-0789
• Cousino, M. K., & Hazen, R. A. (2013). Parenting stress among caregivers of children with chronic illness: a systematic review. Pediatr. Psychol., 38(8), 809-828. https://doi.org/10.1093/jpepsy/jst049
• Dambi, J. M., Mandizvidza, C., Chiwaridzo, M., Nhunzvi, C., & Tadyanemhandu, C. (2016). Does an educational workshop have an impact on caregivers’ levels of knowledge about cerebral palsy? A comparative, descriptive cross-sectional survey of Zimbabwean caregivers. Malawi Med. J., 28(4), 167-173. http://dx.doi.org/10.4314/mmj.v28i4.4
• de Oliveira, G. R., Neto, J. F., de Camargo, S. M., Lucchetti, A. L. G., Espinha, D. C. M., & Lucchetti, G. (2015). Caregiving across the lifespan: comparing caregiver burden, mental health, and quality of life. Psychogeriatrics, 15(2), 123-132. https://doi.org/10.1111/psyg.12087
• Gallagher, S., Phillips, A. C., & Carroll, D. (2010). Parental stress is associated with poor sleep quality in parents caring for children with developmental disabilities. J Pediatr Psychol, 35(7), 728-737. https://doi.org/10.1093/jpepsy/jsp093
• Gilson, K. M., Davis, E., Johnson, S., Gains, J., Reddihough, D., & Williams, K. (2018). Mental health care needs and preferences for mothers of children with a disability. Child Care Health Dev, 44(3), 384-391. https://doi.org/10.1111/cch.12556
• Haskett, M. E., Ahern, L. S., Ward, C. S., & Allaire, J. C. (2006). Factor structure and validity of the parenting stress index-short form. J. Clin. Child Adolesc. Psychol., 35(2), 302-312. https://doi.org/10.1207/s15374424jccp3502_14
• Henry, J. D., & Crawford, J. R. (2005). The short‐form version of the Depression Anxiety Stress Scales (DASS‐21): construct validity and normative data in a large non‐clinical sample. Br. J. Clin. Psychol., 44(2), 227-239. https://doi.org/10.1348/014466505X29657
• Hunt, S. M., McKenna, S., McEwen, J., Williams, J., & Papp, E. (1981). The Nottingham Health Profile: subjective health status and medical consultations. Soc. Sci. Med.. Part A: medical psychology & medical sociology, 15(3), 221-229. https://doi.org/10.1016/0271-7123(81)90005-5
• Javalkar, K., Rak, E., Phillips, A., Haberman, C., Ferris, M., & Van Tilburg, M. (2017). Predictors of caregiver burden among mothers of children with chronic conditions. Children, 4(5), 39. https://doi.org/10.3390/children4050039
• Kot, M., Sönmez, S., & Eratay, E. (2018). Özel gereksinimli bireylere sahip ailelerin yaşadıkları zorluklar. Atatürk Üniversitesi Kazım Karabekir Eğitim Fakültesi Dergisi, (37), 85-96.
• Kücükdeveci, A., McKenna, S., Kutlay, S., Gürsel, Y., Whalley, D., & Arasil, T. (2000). The development and psychometric assessment of the Turkish version of the Nottingham Health Profile. Int. J. Rehabil. Res., 23(1), 31-38. http://dx.doi.org/10.1097/00004356-200023010-00004
• Lang, C. P., Boucaut, A., Guppy, M., & Johnston, L. M. (2021). Children with cerebral palsy: a cross‐sectional study of their sleep and their caregiver's sleep quality, psychological health and well‐being. Child: Care Health Dev., 47(6), 859-868. http://dx.doi.org/10.1111/cch.12897
• Lee, M. H., Matthews, A. K., & Park, C. (2019). Determinants of health-related quality of life among mothers of children with cerebral palsy. J. Pediatr. Nurs., 44, 1-8. http://dx.doi.org/10.1016/j.pedn.2018.10.001
• Leng, A., Xu, C., Nicholas, S., Nicholas, J., & Wang, J. (2019). Quality of life in caregivers of a family member with serious mental illness: evidence from China. Arch. Psychiatr. Nurs., 33(1), 23-29. http://dx.doi.org/10.1016/j.apnu.2018.08.010
• Lovibond, P. F., & Lovibond, S. H. (1995). The structure of negative emotional states: comparison of the Depression Anxiety Stress Scales (DASS) with the Beck Depression and Anxiety Inventories. Behav. Res. Ther., 33(3), 335-343. http://dx.doi.org/10.1016/0005-7967(94)00075-U
• Marquis, S. M., McGrail, K., & Hayes, M. (2020). Mental health of parents of children with a developmental disability in British Columbia, Canada. J Epidemiol Community Health, 74(2), 173-178. http://dx.doi.org/10.1136/jech-2018-211698
• McCann, D., Bull, R., & Winzenberg, T. (2012). The daily patterns of time use for parents of children with complex needs: a systematic review. J. Pediatr. Health Care. , 16(1), 26-52. http://dx.doi.org/10.1177/1367493511420186
• Meltzer, L. J., & Mindell, J. A. (2007). Relationship between child sleep disturbances and maternal sleep, mood, and parenting stress: a pilot study. J Fam Psychol, 21(1), 67. http://dx.doi.org/10.1037/0893-3200.21.1.67
• Meltzer, L. J., & Montgomery-Downs, H. E. (2011). Sleep in the family. Pediatric Clinics, 58(3), 765-774. http://dx.doi.org/10.1016/j.pcl.2011.03.010
• Pinquart, M., & Sörensen, S. (2003). Differences between caregivers and noncaregivers in psychological health and physical health: a meta-analysis. Psychol. Aging., 18(2), 250. http://dx.doi.org/10.1037/0882-7974.18.2.250
• Punaglom, N., Tungpaibool, P., Sansuriwong, P., Kaewkerd, O., & Boobpamala, S. (2022). Integrative review for of family-centered care intervention to promote family functioning in families living with children with chronic illness. The Bangkok Medical Journal, 18(2), 131-131. https://doi.org/10.31524/bkkmedj.2022.23.001
• Raina, P., O'Donnell, M., Schwellnus, H., Rosenbaum, P., King, G., Brehaut, J., Russell, D., Swinton, M., King, S., & Wong, M. (2004). Caregiving process and caregiver burden: conceptual models to guide research and practice. BMC pediatrics, 4, 1-13. http://dx.doi.org/10.1186/1471-2431-4-1
• Rassafiani, M., Kahjoogh, M. A., Hosseini, A., & Sahaf, R. (2012). Time use in mothers of children with cerebral palsy: a comparison study. Hong Kong J. Occup. Ther., 22(2), 70-74. http://dx.doi.org/10.1016/j.hkjot.2012.11.001
• Sahay, A., Prakash, J., Khaique, A., Kumar, P., Meenakshi, S., Ravichandran, K., Patel, N., Gautaman, V., Jangir, S., & Singh, N. (2013). Parents of intellectually disabled children: a study of their needs and expectations. International Journal of Humanities and Social Science Invention, 2(7), 1-8.
• Singer, G. H. (2006). Meta-analysis of comparative studies of depression in mothers of children with and without developmental disabilities. Am. J. Ment. Retard., 111(3), 155-169. http://dx.doi.org/10.1352/0895-8017(2006)111%5B155:MOCSOD%5D2.0.CO;2
• Stein, R. E., & Jessop, D. J. (2003). The impact on family scale revisited: further psychometric data. J Dev Behav Pediatr, 24(1), 9-16. http://dx.doi.org/10.1097/00004703-200302000-00004
• Stein, R. E., & Riessman, C. K. (1980). The development of an impact-on-family scale: preliminary findings. Med. Care, 18(4), 465-472. http://dx.doi.org/10.1097/00005650-198004000-00010
• Şimşek, İ. E., Erel, S., Şimşek, T. T., Uysal, S. A., Yakut, H., Yakut, Y., & Uygur, F. (2014). Factors related to the impact of chronically disabled children on their families. Pediatr. Neurol., 50(3), 255-261. http://dx.doi.org/10.1016/j.pediatrneurol.2013.11.012
• Torpil, B., Pekçetin, E., & Pekçetin, S. (2022). Uyku kalitesi kötü olan sağlıklı erişkinlerde okupasyonel yeterlilik ve önem: kesitsel araştırma. Turkiye Klinikleri J Health Sci, 7(3). http://dx.doi.org/10.5336/healthsci.2022-88177
• Van Cleave, J. (2015). Children with special health care needs: with population-based data, better individual care plans. Pediatrics, 135(4), e1040-e1041. http://dx.doi.org/10.1542/peds.2015-0319
• Walker, S. N., Sechrist, K. R., & Pender, N. J. (1987). The health-promoting lifestyle profile: development and psychometric characteristics. Nurs. Res., 36(2), 76-81. http://dx.doi.org/10.1097/00006199-198703000-00002
• Yılmaz, Ö., Hakan, B., & Arslan, A. (2017). Depresyon Anksiyete Stres Ölçeğinin (Dass 21) Türkçe kısa formunun geçerlilik-güvenilirlik çalışması. Finans Ekonomi ve Sosyal Araştırmalar Dergisi, 2(2), 78-91.
• Zuurmond, M., Nyante, G., Baltussen, M., Seeley, J., Abanga, J., Shakespeare, T., Collumbien, M., & Bernays, S. (2019). A support programme for caregivers of children with disabilities in Ghana: understanding the impact on the wellbeing of caregivers. Child: Care Health Dev., 45(1), 45-53. http://dx.doi.org/10.1111/cch.12618