Research Article
Evde Sağlık Hizmeti Alan Çocukların Ailelerinin Bakım Veren Yükleri ve Manevi Yönelimleri Arasındaki Etkileşim
Abstract
Amaç: Evde sağlık hizmeti (ESH) alan çocuklara sahip olmak bu durumun geçici olmaması ebeveynler için ciddi bakım yükü oluşturabilir. Çalışmada bu ebeveynlerin yaşadığı bakım yükü ile manevi yönelim arasındaki ilişkiyi incelenmesi amaçlamaktadır.
Yöntem: Kesitsel tamamlayıcı çalışmaya 118 EBH alan çocuğun ebeveyni katılmıştır. Verilerin toplanmasında “Sosyodemografik Form”, “Manevi Yönelim Ölçeği (SOS)”, “Zarit Bakım Veren Yük Ölçeği” (ZBYC) kullanıldı.
Bulgular: Evde bakım hizmeti alan çocukların %39.8’nin bakım vereni sadece anne olup hem anne hem babanın bakım verme oranı %55.9 idi. Bakım verenlerin %65.3’nün geliri giderinden az, %80.5’i ev hanımı idi. 1-6 yaş arası çocuğu olan ebeveynlerin daha büyük yaş grubunda çocuğu olanlara göre daha düşük manevi yönelim düzeylerine ve daha yüksek düzeyde bakım yüküne sahip oldukları belirlendi. Eğitim durumu düşük geliri giderinden az olan ebeveynlerin manevi yönelim düzeyleri yüksekti.
Sonuç: Araştırmada manevi yönelim puanı yüksek olan ebeveynlerin daha az bakım yükü algıladıkları ortaya çıktı. Bu bulgular ebeveynlere manevi destek sağlamaya yönelik etkinliklerin uygulanmasının gerekliliğini ortaya koymaktadır.
References
- Zarit SH. Family care and burden at the end of life. CMAJ. 2004;170(12):1811-1812.
- Macedo EC, da Silva LR, Paiva MS, Ramos MN. Burden and quality of life of mothers of children and adolescents with chronic illnesses: an integrative review. Rev Lat Am Enfermagem. 2015;23(4):769-777.
- Javalkar K, Rak E, Phillips A, Haberman C, Ferris M, Van Tilburg M. Predictors of Caregiver Burden among Mothers of Children with Chronic Conditions. Children (Basel). 2017;4(5):39.
- Ma Q, Yan Z, Chang L, Zhang Q, Li Y. Family resilience and subjective responses to caregiving for children with epilepsy. Epilepsy Behav. 2021; 125:108417.
- Dambi JM, Jelsma J. The impact of hospital-based and community based models of cerebral palsy rehabilitation: a quasi-experimental study. BMC Pediatr. 2014; 14:301.
- Chávez Andrade CP. Análisis de los factores relacionados con la carga del cuidador de personas con parálisis cerebral [Analysis of factors related to caregiver burden in carers of persons with cerebral palsy]. Rehabilitacion (Madr). 2021;55(1):8-14.
- Chai YC, Mahadevan R, Ng CG, Chan LF, Md. Dai F. Caregiver depression: The contributing role of depression in patients, stigma, social support and religiosity. Int J Soc Psychiatry. 2018;64(6):578-588.
- İnci F, Erdem M. Validity and reliability of the burden interview and its adaptation to Turkish. Journal of Anatolia Nursing and Health Sciences 2008;11(4):85-95.
- Kasapoğlu, F. Development of Spiritual Orientation Scale: The study of validity and reliability. Inonu University Journal of the Faculty of Education. 2016;16(3), 51-68.
- Kalınkara, V. & Kalaycı, İ. Yaşlıya Evde Bakım Hizmeti Veren Bireylerde Yaşam Doyumu, Bakım Yükü ve Tükenmişlik. Yaşlı Sorunları Araştırma Dergisi.2017; 10 (2), 19-39.
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- Ören B, Aydın R. Examination of Caregiver Burden and Depression Conditions of Parents with Disabled Children. CBU-SBED. 2020; 7(3): 302-309.
- Beyazıt U,Tascıoglu G, Ayhan AB. The examınatıon of care gıvıng burden of parents who have chıldren beıng treated at the hospıtal. Adnan Menderes University Journal of Health Sciences Faculty Y.2017. Vol.1, No.1, 10-19.
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- Lazzarin P, Schiavon B, Brugnaro L, Benini F. Parents spend an average of nine hours a day providing palliative care for children at home and need to maintain an average of five life-saving devices. Acta Paediatr. 2018;107(2):289-293.
- Harputluoğlu N, Çubukçu D, Yılmaz Ü, Çelik T. Investigation of care burden and musculoskeletal pain of parents of paediatric palliative care patients in Turkey. East Mediterr Health J. 2022 Aug 31;27(8):569-576.
- Palfrey JS, Sofis LA, Davidson EJ, Liu J, Freeman L, et al. The Pediatric Alliance for Coordinated Care: evaluation of a medical home model. Pediatrics. 2004;113(Suppl 5):1507-16.
- Erkan H., Altuntaş M. Evaluation of Care Burden for the Patients Receiving Home Health Care.Ankara Med J. 2019; 19(3): 591-601.
- Byra, S., Zubrzycka, R., Wójtowicz, P. Positive orientation and posttraumatic growth in mothers of children with cystic fibrosis—Mediating role of coping strategies. Journal of Pediatric Nursing. 2021; 57, e1–e8.
- Ebenau, A., van Gurp, J., & Hasselaar, J. Life values of elderly people suffering from incurable cancer: A literature review. Patient Education and Counseling, 2017;100(10), 1778–1786.
- Akyüz, I, Kulaoğlu, S. Investigation the relationship between spiritual orientation and depression in the context of sociodemographic variables. Journal of Social Health.2021; 1(1), 63–80.
- Alahan N. A., Aylaz R., Yetiş G. The Burden of Care in The Parents of The Children With Chronic Disease. Ann Health Sci Res. 2015; 4(2): 1-5.
- Kardaş Özdemir F,Akgün Şahin Z,Küçük Alemdar D. Kanserli Çocuğu Olan Annelerin Bakım Verme Yüklerinin Belirlenmesi. Yeni Tıp Dergisi. 2009; 26(3): 153- 158.
- Stacey AF, Gill TK, Price K, Taylor AW. Biomedical health profiles of unpaid family carers in an urban population in South Australia. PLoS ONE 2019;14(3): e0208434.
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- Mohammadizadeh, A., Askarizadeh, G., & Bagheri, M. The relationship between spiritual health and death anxiety in patients with multiple sclerosis. Journal of religion and health,2017; 4(2), 20–8.
- Shaw, A., Joseph, S., Linley, P. A. Religion, spirituality, and posttraumatic growth: A systematic review. Mental Health, Religion and Culture, 2005; 8(1), 111.
- Eicher PS, Batshaw ML. Cerebral palsy. Pediatr Clin North Am. 1993;40(3):537–51.
- Carretero S, Garcés J, Ródenas F, Sanjosé V. The informal caregiver’s burden of dependent people: theory and empirical review. Arch Gerontol Geriatr. 2009 Jul–Aug;49(1):74–79.
- Sawyer, M. G., Bittman, M., La Greca, A. M., Crettenden, A. D., Borojevic, N., Raghavendra, P., & Russo, R. (2011). Time demands of caring for children with cerebral palsy: What are the implications for maternal mental health? Developmental Medicine and Child Neurology, 53(4), 338–343.
- Crettenden, A., Lam, J., & Denson, L. (2018). Grandparent support of mothers caring for a child with a disability: Impacts for maternal mental health. Research in Developmental Disabilities, 76, 35–45.
Interaction between the Caregiver Burdens and Spiritual Orientations of the Families of Children Receiving Home Care Services
Abstract
Objectives: The permanent nature of possession of children receiving home care services (HCS) can represent a severe caregiver burden for parents. The purpose of this study was to examine the relationship between these parents’ caregiver burdens and spiritual orientation.
Materials and Methods: The parents of 118 children receiving HCS participated in this cross-sectional, descriptive study. Data were collected using a Sociodemographic Information Form, the Spiritual Orientation Scale (SOS), and the Zarit Caregiver Burden Scale (ZBCS).
Results: The mother was the caregiver for 39.8% of the children receiving HHS, while both parents provided care for 55.9%. Income was lower than expenditure among 65.3% of caregivers, and 80.5% were housewives. The parents of children aged 1-6 years exhibited lower spiritual orientation levels and a higher caregiver burden than those with older children. Spiritual orientation levels were higher among parents with low education levels and income lower than expenditure.
Conclusions: Parents with high spiritual orientation scores were found to perceive a lower caregiver burden. This indicates the need for activities aimed at providing spiritual support for parents.
Ethical Statement
This study was performed in line with the principles of the Declaration of Helsinki. The study was approved by the University of Samsun non-interventional clinical research ethical committee, Türkiye
Supporting Institution
No financial or non-financial benefits have been received or will be received from any party related directly or indirectly to the subject of this article.
Thanks
We would like to thank our patients, their valuable parents and the healthcare professionals who contributed to our study.
References
- Zarit SH. Family care and burden at the end of life. CMAJ. 2004;170(12):1811-1812.
- Macedo EC, da Silva LR, Paiva MS, Ramos MN. Burden and quality of life of mothers of children and adolescents with chronic illnesses: an integrative review. Rev Lat Am Enfermagem. 2015;23(4):769-777.
- Javalkar K, Rak E, Phillips A, Haberman C, Ferris M, Van Tilburg M. Predictors of Caregiver Burden among Mothers of Children with Chronic Conditions. Children (Basel). 2017;4(5):39.
- Ma Q, Yan Z, Chang L, Zhang Q, Li Y. Family resilience and subjective responses to caregiving for children with epilepsy. Epilepsy Behav. 2021; 125:108417.
- Dambi JM, Jelsma J. The impact of hospital-based and community based models of cerebral palsy rehabilitation: a quasi-experimental study. BMC Pediatr. 2014; 14:301.
- Chávez Andrade CP. Análisis de los factores relacionados con la carga del cuidador de personas con parálisis cerebral [Analysis of factors related to caregiver burden in carers of persons with cerebral palsy]. Rehabilitacion (Madr). 2021;55(1):8-14.
- Chai YC, Mahadevan R, Ng CG, Chan LF, Md. Dai F. Caregiver depression: The contributing role of depression in patients, stigma, social support and religiosity. Int J Soc Psychiatry. 2018;64(6):578-588.
- İnci F, Erdem M. Validity and reliability of the burden interview and its adaptation to Turkish. Journal of Anatolia Nursing and Health Sciences 2008;11(4):85-95.
- Kasapoğlu, F. Development of Spiritual Orientation Scale: The study of validity and reliability. Inonu University Journal of the Faculty of Education. 2016;16(3), 51-68.
- Kalınkara, V. & Kalaycı, İ. Yaşlıya Evde Bakım Hizmeti Veren Bireylerde Yaşam Doyumu, Bakım Yükü ve Tükenmişlik. Yaşlı Sorunları Araştırma Dergisi.2017; 10 (2), 19-39.
- Bull MJ. Interventions for women as family caregivers. Annu Rev Nurs Res. 2001; 19:125-42.
- Ören B, Aydın R. Examination of Caregiver Burden and Depression Conditions of Parents with Disabled Children. CBU-SBED. 2020; 7(3): 302-309.
- Beyazıt U,Tascıoglu G, Ayhan AB. The examınatıon of care gıvıng burden of parents who have chıldren beıng treated at the hospıtal. Adnan Menderes University Journal of Health Sciences Faculty Y.2017. Vol.1, No.1, 10-19.
- Oberst MT, Thomas SE, Gass KA, Ward SE. Caregiving demands and appraisal of stress among family caregivers. Cancer Nurs. 1989;12(4):209-215.
- Lazzarin P, Schiavon B, Brugnaro L, Benini F. Parents spend an average of nine hours a day providing palliative care for children at home and need to maintain an average of five life-saving devices. Acta Paediatr. 2018;107(2):289-293.
- Harputluoğlu N, Çubukçu D, Yılmaz Ü, Çelik T. Investigation of care burden and musculoskeletal pain of parents of paediatric palliative care patients in Turkey. East Mediterr Health J. 2022 Aug 31;27(8):569-576.
- Palfrey JS, Sofis LA, Davidson EJ, Liu J, Freeman L, et al. The Pediatric Alliance for Coordinated Care: evaluation of a medical home model. Pediatrics. 2004;113(Suppl 5):1507-16.
- Erkan H., Altuntaş M. Evaluation of Care Burden for the Patients Receiving Home Health Care.Ankara Med J. 2019; 19(3): 591-601.
- Byra, S., Zubrzycka, R., Wójtowicz, P. Positive orientation and posttraumatic growth in mothers of children with cystic fibrosis—Mediating role of coping strategies. Journal of Pediatric Nursing. 2021; 57, e1–e8.
- Ebenau, A., van Gurp, J., & Hasselaar, J. Life values of elderly people suffering from incurable cancer: A literature review. Patient Education and Counseling, 2017;100(10), 1778–1786.
- Akyüz, I, Kulaoğlu, S. Investigation the relationship between spiritual orientation and depression in the context of sociodemographic variables. Journal of Social Health.2021; 1(1), 63–80.
- Alahan N. A., Aylaz R., Yetiş G. The Burden of Care in The Parents of The Children With Chronic Disease. Ann Health Sci Res. 2015; 4(2): 1-5.
- Kardaş Özdemir F,Akgün Şahin Z,Küçük Alemdar D. Kanserli Çocuğu Olan Annelerin Bakım Verme Yüklerinin Belirlenmesi. Yeni Tıp Dergisi. 2009; 26(3): 153- 158.
- Stacey AF, Gill TK, Price K, Taylor AW. Biomedical health profiles of unpaid family carers in an urban population in South Australia. PLoS ONE 2019;14(3): e0208434.
- Hojjati, H., Q, M., Nazari, R., Sharifnia, S. H., & Akhundzadeh, G. On the relationship between prayer frequency and spiritual healthin patients under hemodialysistherapy. Fundamentals of Mental Health, 2010; 12(2), 514–521.
- Mohammadizadeh, A., Askarizadeh, G., & Bagheri, M. The relationship between spiritual health and death anxiety in patients with multiple sclerosis. Journal of religion and health,2017; 4(2), 20–8.
- Shaw, A., Joseph, S., Linley, P. A. Religion, spirituality, and posttraumatic growth: A systematic review. Mental Health, Religion and Culture, 2005; 8(1), 111.
- Eicher PS, Batshaw ML. Cerebral palsy. Pediatr Clin North Am. 1993;40(3):537–51.
- Carretero S, Garcés J, Ródenas F, Sanjosé V. The informal caregiver’s burden of dependent people: theory and empirical review. Arch Gerontol Geriatr. 2009 Jul–Aug;49(1):74–79.
- Sawyer, M. G., Bittman, M., La Greca, A. M., Crettenden, A. D., Borojevic, N., Raghavendra, P., & Russo, R. (2011). Time demands of caring for children with cerebral palsy: What are the implications for maternal mental health? Developmental Medicine and Child Neurology, 53(4), 338–343.
- Crettenden, A., Lam, J., & Denson, L. (2018). Grandparent support of mothers caring for a child with a disability: Impacts for maternal mental health. Research in Developmental Disabilities, 76, 35–45.
There are 31 citations in total.
Details
| Primary Language | English |
|---|---|
| Subjects | Pediatric Neurology, Pediatric Intensive Care , Paediatrics (Other) |
| Journal Section | Research Articles |
| Authors | |
| Early Pub Date | April 17, 2024 |
| Publication Date | April 30, 2024 |
| Submission Date | December 8, 2023 |
| Acceptance Date | January 3, 2024 |
| Published in Issue | Year 2024 Volume: 13 Issue: 1 |
