Nöromüsküler Hastalığı Olan Bireylerin ve Ailelerinin Palyatif Bakım İhtiyacı: Sosyal Hizmet Bakış Açısıyla Değerlendirme
Özet
Referanslar
Abresch RT, Seyden NK, Wineinger MA. Quality of life. Issues for persons with neuromuscular diseases. Phys Med Rehabil Clin N Am. 1998 Feb;9(1):233-48. PMID: 9894142.
Andrews, J. G., Pandya, S., Trout, C., Jaff, T., Matthews, D., Cunniff, C., & Meaney, F. J. (2019). Palliative care services in families of males with muscular dystrophy: Data from MD STARnet. SAGE Open Med, 7, 2050312119840518. doi:10.1177/2050312119840518
Arden, O., Judith G., Vickie, L., “Social work involvement in palliative care heart failure research: a review of recent literatüre”, Current Opinion in Supportive and Palliative Care: March 2020 - Volume 14 - Issue 1 - p 3-8.
Arias, R., Andrews, J., Pandya, S., Pettit, K., Trout, C., Apkon, S., . . . Meaney, F. J. (2011). Palliative care services in families of males with Duchenne muscular dystrophy. Muscle Nerve, 44(1), 93-101. doi:10.1002/mus.22005
Bally, J. M. G., Smith, N. R., Holtslander, L., Duncan, V., Hodgson-Viden, H., Mpofu, C., & Zimmer, M. (2018). A Metasynthesis: Uncovering What Is Known About the Experiences of Families With Children Who Have Life-limiting and Life-threatening Illnesses. Journal of Pediatric Nursing-Nursing Care of Children & Families, 38, 88-98. doi:10.1016/j.pedn.2017.11.004
Bekiroğlu, S., & Çifci, E. G. (2017). Nöromüsküler Hasta Ailelerinin Yaşadıkları Güçlükler. Türkiye Sosyal Araştırmalar Dergisi, 21(3), 704-722.
Bekiroğlu, S., & Çiftçi Gökçearslan, E. (2017). Nöromüsküler Hasta Ailelerinin Yaşadıkları Güçlükler. Türkiye Sosyal Araştırmalar Dergisi, 704-722.
Chio, A., Mora, G., & Lauria, G. (2017). Pain in amyotrophic lateral sclerosis. Lancet Neurol(16), 144-157.
de Visser, M., & Oliver, D. (2017). Palliative Care in Neuromuscular Diseases. Current Opinion Neurology(30), 1-6.
DSÖ. (2018). WHO Definition of Palliative Care. World Health Organization: https://www.who.int/health-topics/palliative-care, Haziran 2022.
HASGÜL, E. (2021). Neuromuscular Disease and Social Work. Research & Reviews in Health Sciences-I.
Işıkhan, V. (2016). Palyatif Bakım Hizmetlerinde Sosyal Hizmet Mesleğinin Yeri ve Geleceği. Toplum ve Sosyal Hizmet, 27(2), 97-113.
James J. Dowling, H. D. G., Ronald D. Cohn, Craig Campbell. (2017). Treating pediatric neuromuscular disorders: The future is now. American Journal of Medical Genetics, 176(4), 1-38.
Janisch, M., Boehme, K., Thiele, S., Bock, A., Kirschner, J., Schara, U., . . . von der Hagen, M. (2020). Tasks and interfaces in primary and specialized palliative care for Duchenne muscular dystrophy- A patients' perspective. Neuromuscul Disord, 30(12), 975-985. doi:10.1016/j.nmd.2020.09.031
Javiera, o. N. V. C. F. I. A. (2022). Mental health and psychological adaptation on parents of children with neuromuscular diseases. Chıldren’s Health Care, 51(1), 62-78.
Jonas, D. Ve diğerleri, “Defining Core Competencies and a Call to Action: Dissecting and Embracing the Crucial and Multifaceted Social Work Role in Pediatric Palliative Care”, Journal of Pain and Symptom Management Volume 63, Issue 6, June 2022, Pages e739-e748.
Jonas, D., Scanlon, C., Schmidt, L., & Bogetz, J. (2020). Creating a Seat at the Table: How Family Meetings Elucidate the Palliative Care Social Work Role. J Palliat Med, 23(12), 1688-1691. doi:10.1089/jpm.2019.0645
Kovacs, P. J., Bellin, M.H., Fauri, D. P., “Family-Centered Care: A Resource for Social Work in End-of-Life and Palliative Care”, Journal of Social Work in End-of-Life & Palliative Care, Vol. 2(1) 2006.
Kovacs, P., Bellin, H. M., & Fauri, P. D. (2018). Family- Centered Care a Resource for Social Work in End-of-Life and Palliative Care. Journal of Social Work in End-of-Life& Palliative Care, 13-26.
LaDonna, K. A. (2011). A Literature Review of Studies Using Qualitative Research to Explore Chronic Neuromuscular Disease. Journal of Neuroscience Nursing, 43(3), 172-182.
NAWS, “Natıonal Assocıatıon Of Socıal Workers Standards for Palliative & End of Life” Carehttps://www.socialworkers.org/LinkClick.aspx?fileticket=xBMd58VwEhk%3D&, Erişim Tarihi: 29 Mayıs 2022.
Oechsle, K. “Current Advances in Palliative & Hospice Care: Problems and Needs of Relatives and Family Caregivers During Palliative and Hospice Care—An Overview of Current Literature”. Medical Sciences, 2019. file:///C:/Users/GenBas/Downloads/medsci-07-00043-v2.pdf.
Paganoni, S., Nicholson, K., Leigh, F., Swoboda, K., Chad, D., Drake, K., . . . Berry, J. D. (2017). Developing multidisciplinary clinics for neuromuscular care and research. Muscle Nerve, 56(5), 848-858. doi:10.1002/mus.25725
Ragesh, G. Ve diğerleri “Palliative Care Social Work In India: Current Status and Future Directions” Indian J Palliat Care. 2017 Jan-Mar; 23(1): 93–99.
Rine, C. M. “Is Social Work Prepared for Diversity in Hospice and Palliative Care?”, Health & Social Work Volume 43, Number 1 February 2018.
Sarah, T. B. (Ed.) (2019). Handbook of Health Social Work (Vol. 3): Jossey-Bass.
Thiel, M. Ve diğerleri, “Social Work Training in Palliative Care: Addressing the Gap” American Journal of Hospice & Palliative Medicine 2021, Vol. 38(8) 893-898.
Thomas PT, Rajaram P, Nalini A. Psychosocial challenges in family caregiving with children suffering from Duchenne muscular dystrophy. Health Soc Work. 2014 Aug;39(3):144-52. doi: 10.1093/hsw/hlu027. PMID: 25095627.
Tuncay, T. (2013). Yaşam Sonu Bakımda Sosyal Hizmet Uzmanının Rolleri. Toplum ve Sosyal Hizmet, 24(2).
van Vliet, L., Gao, W., DiFrancesco, D., & vd. (2016). How intergrated are neurology and palliative care services? Results of a multicentre mapping exercise. BMC Neurol(16), 63-70.
Winter Y, Schepelmann K, Spottke AE, Claus D, Grothe C, Schröder R, Heuss D, Vielhaber S, Tackenberg B, Mylius V, Reese JP, Kiefer R, Schrank B, Oertel WH, Dodel R. Health-related quality of life in ALS, myasthenia gravis and facioscapulohumeral muscular dystrophy. J Neurol. 2010 Sep;257(9):1473-81. doi: 10.1007/s00415-010-5549-9. Epub 2010 Apr 10. PMID: 20383521.
Referanslar
Abresch RT, Seyden NK, Wineinger MA. Quality of life. Issues for persons with neuromuscular diseases. Phys Med Rehabil Clin N Am. 1998 Feb;9(1):233-48. PMID: 9894142.
Andrews, J. G., Pandya, S., Trout, C., Jaff, T., Matthews, D., Cunniff, C., & Meaney, F. J. (2019). Palliative care services in families of males with muscular dystrophy: Data from MD STARnet. SAGE Open Med, 7, 2050312119840518. doi:10.1177/2050312119840518
Arden, O., Judith G., Vickie, L., “Social work involvement in palliative care heart failure research: a review of recent literatüre”, Current Opinion in Supportive and Palliative Care: March 2020 - Volume 14 - Issue 1 - p 3-8.
Arias, R., Andrews, J., Pandya, S., Pettit, K., Trout, C., Apkon, S., . . . Meaney, F. J. (2011). Palliative care services in families of males with Duchenne muscular dystrophy. Muscle Nerve, 44(1), 93-101. doi:10.1002/mus.22005
Bally, J. M. G., Smith, N. R., Holtslander, L., Duncan, V., Hodgson-Viden, H., Mpofu, C., & Zimmer, M. (2018). A Metasynthesis: Uncovering What Is Known About the Experiences of Families With Children Who Have Life-limiting and Life-threatening Illnesses. Journal of Pediatric Nursing-Nursing Care of Children & Families, 38, 88-98. doi:10.1016/j.pedn.2017.11.004
Bekiroğlu, S., & Çifci, E. G. (2017). Nöromüsküler Hasta Ailelerinin Yaşadıkları Güçlükler. Türkiye Sosyal Araştırmalar Dergisi, 21(3), 704-722.
Bekiroğlu, S., & Çiftçi Gökçearslan, E. (2017). Nöromüsküler Hasta Ailelerinin Yaşadıkları Güçlükler. Türkiye Sosyal Araştırmalar Dergisi, 704-722.
Chio, A., Mora, G., & Lauria, G. (2017). Pain in amyotrophic lateral sclerosis. Lancet Neurol(16), 144-157.
de Visser, M., & Oliver, D. (2017). Palliative Care in Neuromuscular Diseases. Current Opinion Neurology(30), 1-6.
DSÖ. (2018). WHO Definition of Palliative Care. World Health Organization: https://www.who.int/health-topics/palliative-care, Haziran 2022.
HASGÜL, E. (2021). Neuromuscular Disease and Social Work. Research & Reviews in Health Sciences-I.
Işıkhan, V. (2016). Palyatif Bakım Hizmetlerinde Sosyal Hizmet Mesleğinin Yeri ve Geleceği. Toplum ve Sosyal Hizmet, 27(2), 97-113.
James J. Dowling, H. D. G., Ronald D. Cohn, Craig Campbell. (2017). Treating pediatric neuromuscular disorders: The future is now. American Journal of Medical Genetics, 176(4), 1-38.
Janisch, M., Boehme, K., Thiele, S., Bock, A., Kirschner, J., Schara, U., . . . von der Hagen, M. (2020). Tasks and interfaces in primary and specialized palliative care for Duchenne muscular dystrophy- A patients' perspective. Neuromuscul Disord, 30(12), 975-985. doi:10.1016/j.nmd.2020.09.031
Javiera, o. N. V. C. F. I. A. (2022). Mental health and psychological adaptation on parents of children with neuromuscular diseases. Chıldren’s Health Care, 51(1), 62-78.
Jonas, D. Ve diğerleri, “Defining Core Competencies and a Call to Action: Dissecting and Embracing the Crucial and Multifaceted Social Work Role in Pediatric Palliative Care”, Journal of Pain and Symptom Management Volume 63, Issue 6, June 2022, Pages e739-e748.
Jonas, D., Scanlon, C., Schmidt, L., & Bogetz, J. (2020). Creating a Seat at the Table: How Family Meetings Elucidate the Palliative Care Social Work Role. J Palliat Med, 23(12), 1688-1691. doi:10.1089/jpm.2019.0645
Kovacs, P. J., Bellin, M.H., Fauri, D. P., “Family-Centered Care: A Resource for Social Work in End-of-Life and Palliative Care”, Journal of Social Work in End-of-Life & Palliative Care, Vol. 2(1) 2006.
Kovacs, P., Bellin, H. M., & Fauri, P. D. (2018). Family- Centered Care a Resource for Social Work in End-of-Life and Palliative Care. Journal of Social Work in End-of-Life& Palliative Care, 13-26.
LaDonna, K. A. (2011). A Literature Review of Studies Using Qualitative Research to Explore Chronic Neuromuscular Disease. Journal of Neuroscience Nursing, 43(3), 172-182.
NAWS, “Natıonal Assocıatıon Of Socıal Workers Standards for Palliative & End of Life” Carehttps://www.socialworkers.org/LinkClick.aspx?fileticket=xBMd58VwEhk%3D&, Erişim Tarihi: 29 Mayıs 2022.
Oechsle, K. “Current Advances in Palliative & Hospice Care: Problems and Needs of Relatives and Family Caregivers During Palliative and Hospice Care—An Overview of Current Literature”. Medical Sciences, 2019. file:///C:/Users/GenBas/Downloads/medsci-07-00043-v2.pdf.
Paganoni, S., Nicholson, K., Leigh, F., Swoboda, K., Chad, D., Drake, K., . . . Berry, J. D. (2017). Developing multidisciplinary clinics for neuromuscular care and research. Muscle Nerve, 56(5), 848-858. doi:10.1002/mus.25725
Ragesh, G. Ve diğerleri “Palliative Care Social Work In India: Current Status and Future Directions” Indian J Palliat Care. 2017 Jan-Mar; 23(1): 93–99.
Rine, C. M. “Is Social Work Prepared for Diversity in Hospice and Palliative Care?”, Health & Social Work Volume 43, Number 1 February 2018.
Sarah, T. B. (Ed.) (2019). Handbook of Health Social Work (Vol. 3): Jossey-Bass.
Thiel, M. Ve diğerleri, “Social Work Training in Palliative Care: Addressing the Gap” American Journal of Hospice & Palliative Medicine 2021, Vol. 38(8) 893-898.
Thomas PT, Rajaram P, Nalini A. Psychosocial challenges in family caregiving with children suffering from Duchenne muscular dystrophy. Health Soc Work. 2014 Aug;39(3):144-52. doi: 10.1093/hsw/hlu027. PMID: 25095627.
Tuncay, T. (2013). Yaşam Sonu Bakımda Sosyal Hizmet Uzmanının Rolleri. Toplum ve Sosyal Hizmet, 24(2).
van Vliet, L., Gao, W., DiFrancesco, D., & vd. (2016). How intergrated are neurology and palliative care services? Results of a multicentre mapping exercise. BMC Neurol(16), 63-70.
Winter Y, Schepelmann K, Spottke AE, Claus D, Grothe C, Schröder R, Heuss D, Vielhaber S, Tackenberg B, Mylius V, Reese JP, Kiefer R, Schrank B, Oertel WH, Dodel R. Health-related quality of life in ALS, myasthenia gravis and facioscapulohumeral muscular dystrophy. J Neurol. 2010 Sep;257(9):1473-81. doi: 10.1007/s00415-010-5549-9. Epub 2010 Apr 10. PMID: 20383521.
