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Özel Sağlık Bakım Gereksinimi Olan Çocuklara Uygulanan Mola Bakımının Aile Üzerine Etkileri

Yıl 2023, Cilt: 4 Sayı: 2, 33 - 40, 21.08.2023

Öz

Küresel olarak, özel sağlık bakım gereksinimi (ÖSBG) olan çocuğa sahip ailelerin sayısı her geçen gün artmaktadır. Ekonomik ve psikososyal kaygılar nedeniyle ÖSBG olan çocuklar için ev tercih edilen ortam olmuştur. Ancak evde bakım, ailelere çok karmaşık bakım rutinlerini izleme sorumluluğunu yüklemekte ve ebeveynlerin ilaçlar, prosedürler, bakım uygulamaları ve teknolojiyi yönetme konusunda kendilerini geliştirmelerini gerektirmektedir. ÖSBG olan bir çocuğa sürekli ve zaman alıcı karmaşık bakım sağlamak hem zihinsel hem de fiziksel olarak aile birimi için bunaltıcı ve yorucu olabilmektedir. Ebeveynler genellikle çocuğun sağlık sorunlarının karşılanması ile aile biriminin ihtiyaçlarının karşılanması arasında denge kurmaya çalışmaktadırlar. Ebeveynler genellikle kendilerini bunalmış, uykusuz, yorgun, depresif ve hatta umutsuz hissetmektedirler. Mola bakım, genellikle ÖSBG olan çocuk ve gençlerin bakıcıları için önemli bir kaynak olarak tanımlanmaktadır. Mola bakımının özellikleri bir yapboz olarak düşünüldüğünde ailenin ihtiyaçları en temel özellik olduğu için merkez yapboz parçası olarak yerleştirilebilir. Mola bakımın tüm yapboz parçalarının değişen aile ihtiyaçlarına uyması önemlidir. Parçalar değişen aile ihtiyaçlarına uygun değilse, bakım veren için yeterli bir mola olmayacak ve bu durum mola bakım hizmetlerinden yararlanamama ile sonuçlanacaktır. Ebeveynler, bakıma mola vermenin kendileri, çocukları ve ailedeki diğer kardeşler için faydalı temel bir destek olduğunu ifade etmektedirler. Bu destek primer bakıcısı olan ebeveyne uyku, dinlenme gibi temel gereksinimlerini karşılamak, diğer çocuklarının aktivitelerine katılmak, eğlenceye zaman ayırmak, alışveriş yapmak için zaman sağlamaktadır. Yapılan çalışmalarda annelerin bu hizmetten yarar gördükleri, özellikle streslerini azalttığı ve dinlenme imkânı buldukları belirlenmiştir. Bu hizmet annelerin tükenmişliğini azaltmakta ve yenilenmeleri için olanak vermektedir. Ailelerin yaşam kalitelerinde ve sağlıklı kardeşlerin anne ile geçirdikleri zamanda artış olmaktadır. Ebeveynler eğlence ve boş zaman aktivitelerine vakit bulabilmektedirler. Mola bakımının ÖSBG olan çocukların aile üzerine olumlu etkilerinin olduğu görülmektedir.

Kaynakça

  • 1. Whitmore KE, Snethen J. Respite care services for children with special healthcare needs: Parental perceptions. J Spec Pediatr Nurs. 2018;23(3):e12217. doi:10.1111/jspn.12217
  • 2. Aydın Ateş N, Albayrak S. Özel sağlık bakım gereksinimi olan çocuklar. Kuğuoğlu S, Sönmez Düzkaya D. Editör. Çocuk Acil Hemşireliği. 1. Baskı. Ankara: Nobel Tıp Kitapevleri; 2021. p.99-104.
  • 3. Whiting M. Support requirements of parents caring for a child with a disability and complex health needs. Nurs Child Young People. 2014;26(4):24-27. doi:10.7748/ncyp2014.05.26.4.24.e389
  • 4. McCann D, Bull R, Winzenberg T. Sleep deprivation in parents caring for children with complex needs at home: a mixed methods systematic review. J Fam Nurs. 2015;21(1):86-118. doi:10.1177/1074840714562026
  • 5. Carter KB, Mandrell BN. Development of a respite care program for caregivers of pediatric oncology patients and their siblings. J Pediatr Oncol Nurs. 2013;30(2):109-114. doi:10.1177/1043454212473652
  • 6. Sterni LM, Collaco JM, Baker CD, Carroll JL, Sharma GD, Brozek JL, et al. An Official American Thoracic Society Clinical Practice Guideline: Pediatric Chronic Home Invasive Ventilation. Am J Respir Crit Care Med. 2016;193(8):e16-e35. doi:10.1164/rccm.201602-0276ST
  • 7. Pilapil M, Coletti DJ, Rabey C, DeLaet D. Caring for the Caregiver: Supporting Families of Youth With Special Health Care Needs. Curr Probl Pediatr Adolesc Health Care. 2017;47(8):190-199. doi:10.1016/j.cppeds.2017.07.003
  • 8. Mirza M, Keating E, Krischer A, Pinto J. Care coordination Experiences of Low-Income Parents of Children and Youth with Special Health Care Needs: An Exploratory Study. J Health Care Poor Underserved. 2022;33(4):1925-1948. doi:10.1353/hpu.2022.0146
  • 9. Harper A, Taylor Dyches T, Harper J, Olsen Roper S, South M. Respite care, marital quality, and stress in parents of children with autism spectrum disorders. J Autism Dev Disord. 2013;43(11):2604-2616. doi:10.1007/s10803-013-1812-0
  • 10. Welsh R, Dyer S, Evans D, Fereday J. Identifying benefits and barriers to respite for carers of children with complex health needs: A qualitative study. Contemp Nurse. 2014;48(1):98-108. doi:10.5172/conu.2014.48.1.98
  • 11. Remedios C, Willenberg L, Zordan R, Murphy A, Hessel G, Philip J. A pre-test and post-test study of out-of-home respite care's physical and psychological effects on caregivers of children with life-threatening conditions. Palliat Med. 2015;29(3):223-230. doi:10.1177/0269216314560008
  • 12. Watson AR. Psychosocial support for children and families requiring renal replacement therapy. Pediatr Nephrol. 2014;29(7):1169-1174. doi:10.1007/s00467-013-2582-9
  • 13. Kuo DZ, Cohen E, Agrawal R, Berry JG, Casey PH. A national profile of caregiver challenges among more medically complex children with special health care needs. Arch Pediatr Adolesc Med. 2011;165(11):1020-1026. doi:10.1001/archpediatrics.2011.172
  • 14. Whitmore KE. The Concept of Respite Care. Nurs Forum. 2017;52(3):180-187. doi:10.1111/nuf.12179
  • 15. Bowman J, Butcher R, Dolby S. Respite care needs for families of children with life-limiting conditions. Nurs Child Young People. 2011;23(6):14-18. doi:10.7748/ncyp2011.07.23.6.14.c8598
  • 16. Judd D. (1995). Give sorrow words—Working with a dying child (2nd ed.). London, England: Whurr.
  • 17. Corkin DA, Price J, Gillespie E. Respite care for children, young people and families--are their needs addressed?. Int J Palliat Nurs. 2006;12(9):422-427. doi:10.12968/in.2006.12.9.21870
  • 18. Doig JL, McLennan JD, Urichuk L. 'Jumping through hoops': parents' experiences with seeking respite care for children with special needs. Child Care Health Dev. 2009;35(2):234-242. doi:10.1111/j.1365-2214.2008.00922.x
  • 19. Elias ER, Murphy NA; Council on Children with Disabilities. Home care of children and youth with complex health care needs and technology dependencies. Pediatrics. 2012;129(5):996-1005. doi:10.1542/peds.2012-0606
  • 20. Ling J, Payne S, Connaire K, McCarron M. Parental decision-making on utilization of out-of-home respite in children's palliative care: findings of qualitative case study research- a proposed new model. Child Care Health Dev. 2016;42(1):51-59. doi:10.1111/cch.12300
  • 21. Virdun C, Luckett T, Davidson PM, Phillips J. Dying in the hospital setting: A systematic review of quantitative studies identifying the elements of end-of-life care that patients and their families rank as being most important. Palliat Med. 2015;29(9):774-796. doi:10.1177/0269216315583032
  • 22. Hutcheon E, McLennan JD, Urichuk L. Change in mental health status of young children participating in a respite service. J Can Acad Child Adolesc Psychiatry. 2011;20(2):120-126.
  • 23. Murphy M, Hill K, Begley T, Brenner M, Doyle C. Respite Care for Children with Complex Care Needs A Literature Review [published online ahead of print, 2021 Feb 23]. Compr Child Adolesc Nurs. 2021;1-10. doi:10.1080/24694193.2021.1885523
  • 24. Champagne M, Mongeau S. Effects of respite care services in a children's hospice: the parents' point of view. J Palliat Care. 2012;28(4):245-251.
  • 25. Nishigaki K, Yoneyama A, Ishii M, Kamibeppu K. An investigation of factors related to the use of respite care services for children with severe motor and intellectual disabilities (SMID) living at home in Japan. Health Soc Care Community. 2017;25(2):678-689. doi:10.1111/hsc.12358
  • 26. Dyches TT, Christensen R, Harper JM, Mandleco B, Roper SO. Respite Care for Single Mothers of Children with Autism Spectrum Disorders. J Autism Dev Disord. 2016;46(3):812-824. doi:10.1007/s10803-015-2618-z
  • 27. Nankervis K, Rosewarne A, Vassos M. Why do families relinquish care? An investigation of the factors that lead to relinquishment into out-of-home respite care. J Intellect Disabil Res. 2011;55(4):422-433. doi:10.1111/j.1365-2788.2011.01389.x
  • 28. Robertson J, Hatton C, Wells E, et al. The impacts of short break provision on families with a disabled child: an international literature review. Health Soc Care Community. 2011;19(4):337-371. doi:10.1111/j.1365-2524.2010.00977.x
  • 29. Welch V, Hatton C, Emerson E, Robertson J, Collins M, Langer S, Wells E. Do short breaks and respite services for families with a disabled child in England make a difference to siblings? A qualitative analysis of sibling and parent responses. Children and Youth Services Review. 2012 Feb 1;34(2):451-9.
  • 30. Cowen PS, Reed DA. Effects of respite care for children with developmental disabilities: evaluation of an intervention for at-risk families. Public Health Nurs. 2002;19:272–283.
  • 31. Ackerman L, Sheaffer L. Effects of respite care training on respite provider knowledge and confidence, and outcomes for family caregivers receiving respite services. Home Health Care Serv Q. 2018;37(2):77-96. doi:10.1080/01621424.2018.1438954
  • 32. Suzuki S, Kamibeppu K. Impact of respite care on health-related quality of life in children with medical complexity: A parent proxy evaluation. J Pediatr Nurs. 2022;67:e215-e223. doi:10.1016/j.pedn.2022.07.009
  • 33. Sobotka SA, Lynch E, Quinn MT, Awadalla SS, Agrawal RK, Peek ME. Unmet Respite Needs of Children With Medical Technology Dependence. Clin Pediatr (Phila). 2019;58(11-12):1175-1186. doi:10.1177/0009922819870251
  • 34. Graaf G, Baiden P, Boyd G, Keyes L. Barriers to Respite Care for Children with Special Health Care Needs. J Dev Behav Pediatr. 2022;43(3):117-129. doi:10.1097/DBP.0000000000000992
  • 35. Ankara Büyükşehir Belediyesi Mola Bakım Merkezi [Internet]. 2022 Available from: https://www.ankara.bel.tr/haberler/ozel-gereksinimli-cocuklar-ve-aileleri-icin-mola-zamani-15922
  • 36. Diyarbakır Büyükşehir Belediyesi Mola Bakım Merkezi [Internet]. 2022 [cited 2023 Apr 9]. Available from: https://www.diyarbakir.bel.tr/haberler/5127-sosyal-hizmetler.html
  • 37. İzmir Büyükşehir Belediyesi Mola Bakım Merkezi [Internet]. 2023 Erişim Adresi: https://www.izmir-kemalpasa.bel.tr/mola-evi
  • 38. Mersin Büyükşehir Belediyesi Mola Bakım Merkezi [Internet]. 2022 Available from: https://www.mersin.bel.tr/haber/mola-evi-ile-ozel-cocuklar-buyuksehire-emanet-2022-08-09
  • 39. İstanbul Büyükşehir Belediyesi Mola Bakım Merkezi [Internet], Available from: https://sosyalhizmetler.ibb.gov.tr/haberdetay.aspx?ID=29

The Effects of Respite Care Applied to Children with Special Health Care Needs on the Family

Yıl 2023, Cilt: 4 Sayı: 2, 33 - 40, 21.08.2023

Öz

Globally, the number of families with children with special health care needs (SHCN) is increasing day by day. Due to economic and psychosocial concerns, children with SHCN have preferred to be raised at home. Home care, on the other hand, places the obligation of adhering to extremely complicated care routines on families and demands parents increase their ability to manage prescriptions, procedures, care practices, and technology. Providing continuous and time-consuming complex care to a child with SHCN can be both mentally and physically overwhelming and tiring for the family unit. Parents frequently attempt to balance fulfilling their children's health requirements and satisfying the demands of the family unit. Parents often feel overwhelmed, sleepless, tired, depressed, or even hopeless. Respite care is often described as an important resource for caregivers of children and youth with SHCN. Considering the features of respite care as a puzzle, it can be placed as the center puzzle piece, as the family's needs are the most basic. It is important that all of the puzzle pieces of respite care fit the changing family needs. If the pieces are not suitable for the changing family needs, there will not be adequate respite for the caregiver, resulting in the inability to benefit from the rest care services. Parents state that taking a break from care is a useful basic support for themselves, their children, and other siblings in the family. This support provides time for the primary caregiver, the parent, to meet their basic needs such as sleep and rest, to participate in other children's activities, to spare time for entertainment and shopping. Studies have shown that mothers benefit from this service, especially reducing their stress and having the opportunity to rest. This service reduces mothers' burnout and provides opportunities for regeneration. There is an increase in the quality of life of families and the time that healthy siblings spend with their mothers. Parents can find time for entertainment and leisure activities. It is seen that respite care has positive effects on the family of children with SHCN.

Kaynakça

  • 1. Whitmore KE, Snethen J. Respite care services for children with special healthcare needs: Parental perceptions. J Spec Pediatr Nurs. 2018;23(3):e12217. doi:10.1111/jspn.12217
  • 2. Aydın Ateş N, Albayrak S. Özel sağlık bakım gereksinimi olan çocuklar. Kuğuoğlu S, Sönmez Düzkaya D. Editör. Çocuk Acil Hemşireliği. 1. Baskı. Ankara: Nobel Tıp Kitapevleri; 2021. p.99-104.
  • 3. Whiting M. Support requirements of parents caring for a child with a disability and complex health needs. Nurs Child Young People. 2014;26(4):24-27. doi:10.7748/ncyp2014.05.26.4.24.e389
  • 4. McCann D, Bull R, Winzenberg T. Sleep deprivation in parents caring for children with complex needs at home: a mixed methods systematic review. J Fam Nurs. 2015;21(1):86-118. doi:10.1177/1074840714562026
  • 5. Carter KB, Mandrell BN. Development of a respite care program for caregivers of pediatric oncology patients and their siblings. J Pediatr Oncol Nurs. 2013;30(2):109-114. doi:10.1177/1043454212473652
  • 6. Sterni LM, Collaco JM, Baker CD, Carroll JL, Sharma GD, Brozek JL, et al. An Official American Thoracic Society Clinical Practice Guideline: Pediatric Chronic Home Invasive Ventilation. Am J Respir Crit Care Med. 2016;193(8):e16-e35. doi:10.1164/rccm.201602-0276ST
  • 7. Pilapil M, Coletti DJ, Rabey C, DeLaet D. Caring for the Caregiver: Supporting Families of Youth With Special Health Care Needs. Curr Probl Pediatr Adolesc Health Care. 2017;47(8):190-199. doi:10.1016/j.cppeds.2017.07.003
  • 8. Mirza M, Keating E, Krischer A, Pinto J. Care coordination Experiences of Low-Income Parents of Children and Youth with Special Health Care Needs: An Exploratory Study. J Health Care Poor Underserved. 2022;33(4):1925-1948. doi:10.1353/hpu.2022.0146
  • 9. Harper A, Taylor Dyches T, Harper J, Olsen Roper S, South M. Respite care, marital quality, and stress in parents of children with autism spectrum disorders. J Autism Dev Disord. 2013;43(11):2604-2616. doi:10.1007/s10803-013-1812-0
  • 10. Welsh R, Dyer S, Evans D, Fereday J. Identifying benefits and barriers to respite for carers of children with complex health needs: A qualitative study. Contemp Nurse. 2014;48(1):98-108. doi:10.5172/conu.2014.48.1.98
  • 11. Remedios C, Willenberg L, Zordan R, Murphy A, Hessel G, Philip J. A pre-test and post-test study of out-of-home respite care's physical and psychological effects on caregivers of children with life-threatening conditions. Palliat Med. 2015;29(3):223-230. doi:10.1177/0269216314560008
  • 12. Watson AR. Psychosocial support for children and families requiring renal replacement therapy. Pediatr Nephrol. 2014;29(7):1169-1174. doi:10.1007/s00467-013-2582-9
  • 13. Kuo DZ, Cohen E, Agrawal R, Berry JG, Casey PH. A national profile of caregiver challenges among more medically complex children with special health care needs. Arch Pediatr Adolesc Med. 2011;165(11):1020-1026. doi:10.1001/archpediatrics.2011.172
  • 14. Whitmore KE. The Concept of Respite Care. Nurs Forum. 2017;52(3):180-187. doi:10.1111/nuf.12179
  • 15. Bowman J, Butcher R, Dolby S. Respite care needs for families of children with life-limiting conditions. Nurs Child Young People. 2011;23(6):14-18. doi:10.7748/ncyp2011.07.23.6.14.c8598
  • 16. Judd D. (1995). Give sorrow words—Working with a dying child (2nd ed.). London, England: Whurr.
  • 17. Corkin DA, Price J, Gillespie E. Respite care for children, young people and families--are their needs addressed?. Int J Palliat Nurs. 2006;12(9):422-427. doi:10.12968/in.2006.12.9.21870
  • 18. Doig JL, McLennan JD, Urichuk L. 'Jumping through hoops': parents' experiences with seeking respite care for children with special needs. Child Care Health Dev. 2009;35(2):234-242. doi:10.1111/j.1365-2214.2008.00922.x
  • 19. Elias ER, Murphy NA; Council on Children with Disabilities. Home care of children and youth with complex health care needs and technology dependencies. Pediatrics. 2012;129(5):996-1005. doi:10.1542/peds.2012-0606
  • 20. Ling J, Payne S, Connaire K, McCarron M. Parental decision-making on utilization of out-of-home respite in children's palliative care: findings of qualitative case study research- a proposed new model. Child Care Health Dev. 2016;42(1):51-59. doi:10.1111/cch.12300
  • 21. Virdun C, Luckett T, Davidson PM, Phillips J. Dying in the hospital setting: A systematic review of quantitative studies identifying the elements of end-of-life care that patients and their families rank as being most important. Palliat Med. 2015;29(9):774-796. doi:10.1177/0269216315583032
  • 22. Hutcheon E, McLennan JD, Urichuk L. Change in mental health status of young children participating in a respite service. J Can Acad Child Adolesc Psychiatry. 2011;20(2):120-126.
  • 23. Murphy M, Hill K, Begley T, Brenner M, Doyle C. Respite Care for Children with Complex Care Needs A Literature Review [published online ahead of print, 2021 Feb 23]. Compr Child Adolesc Nurs. 2021;1-10. doi:10.1080/24694193.2021.1885523
  • 24. Champagne M, Mongeau S. Effects of respite care services in a children's hospice: the parents' point of view. J Palliat Care. 2012;28(4):245-251.
  • 25. Nishigaki K, Yoneyama A, Ishii M, Kamibeppu K. An investigation of factors related to the use of respite care services for children with severe motor and intellectual disabilities (SMID) living at home in Japan. Health Soc Care Community. 2017;25(2):678-689. doi:10.1111/hsc.12358
  • 26. Dyches TT, Christensen R, Harper JM, Mandleco B, Roper SO. Respite Care for Single Mothers of Children with Autism Spectrum Disorders. J Autism Dev Disord. 2016;46(3):812-824. doi:10.1007/s10803-015-2618-z
  • 27. Nankervis K, Rosewarne A, Vassos M. Why do families relinquish care? An investigation of the factors that lead to relinquishment into out-of-home respite care. J Intellect Disabil Res. 2011;55(4):422-433. doi:10.1111/j.1365-2788.2011.01389.x
  • 28. Robertson J, Hatton C, Wells E, et al. The impacts of short break provision on families with a disabled child: an international literature review. Health Soc Care Community. 2011;19(4):337-371. doi:10.1111/j.1365-2524.2010.00977.x
  • 29. Welch V, Hatton C, Emerson E, Robertson J, Collins M, Langer S, Wells E. Do short breaks and respite services for families with a disabled child in England make a difference to siblings? A qualitative analysis of sibling and parent responses. Children and Youth Services Review. 2012 Feb 1;34(2):451-9.
  • 30. Cowen PS, Reed DA. Effects of respite care for children with developmental disabilities: evaluation of an intervention for at-risk families. Public Health Nurs. 2002;19:272–283.
  • 31. Ackerman L, Sheaffer L. Effects of respite care training on respite provider knowledge and confidence, and outcomes for family caregivers receiving respite services. Home Health Care Serv Q. 2018;37(2):77-96. doi:10.1080/01621424.2018.1438954
  • 32. Suzuki S, Kamibeppu K. Impact of respite care on health-related quality of life in children with medical complexity: A parent proxy evaluation. J Pediatr Nurs. 2022;67:e215-e223. doi:10.1016/j.pedn.2022.07.009
  • 33. Sobotka SA, Lynch E, Quinn MT, Awadalla SS, Agrawal RK, Peek ME. Unmet Respite Needs of Children With Medical Technology Dependence. Clin Pediatr (Phila). 2019;58(11-12):1175-1186. doi:10.1177/0009922819870251
  • 34. Graaf G, Baiden P, Boyd G, Keyes L. Barriers to Respite Care for Children with Special Health Care Needs. J Dev Behav Pediatr. 2022;43(3):117-129. doi:10.1097/DBP.0000000000000992
  • 35. Ankara Büyükşehir Belediyesi Mola Bakım Merkezi [Internet]. 2022 Available from: https://www.ankara.bel.tr/haberler/ozel-gereksinimli-cocuklar-ve-aileleri-icin-mola-zamani-15922
  • 36. Diyarbakır Büyükşehir Belediyesi Mola Bakım Merkezi [Internet]. 2022 [cited 2023 Apr 9]. Available from: https://www.diyarbakir.bel.tr/haberler/5127-sosyal-hizmetler.html
  • 37. İzmir Büyükşehir Belediyesi Mola Bakım Merkezi [Internet]. 2023 Erişim Adresi: https://www.izmir-kemalpasa.bel.tr/mola-evi
  • 38. Mersin Büyükşehir Belediyesi Mola Bakım Merkezi [Internet]. 2022 Available from: https://www.mersin.bel.tr/haber/mola-evi-ile-ozel-cocuklar-buyuksehire-emanet-2022-08-09
  • 39. İstanbul Büyükşehir Belediyesi Mola Bakım Merkezi [Internet], Available from: https://sosyalhizmetler.ibb.gov.tr/haberdetay.aspx?ID=29
Toplam 39 adet kaynakça vardır.

Ayrıntılar

Birincil Dil Türkçe
Konular Sağlık Kurumları Yönetimi
Bölüm Derlemeler
Yazarlar

Perver Karşıgil 0000-0001-9996-7622

Sibel Küçük 0000-0001-9009-1871

Yayımlanma Tarihi 21 Ağustos 2023
Gönderilme Tarihi 22 Ocak 2023
Yayımlandığı Sayı Yıl 2023 Cilt: 4 Sayı: 2

Kaynak Göster

Vancouver Karşıgil P, Küçük S. Özel Sağlık Bakım Gereksinimi Olan Çocuklara Uygulanan Mola Bakımının Aile Üzerine Etkileri. TSAD. 2023;4(2):33-40.