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Arafta Bir Yaşam: Kemik İliği Nakli Olan Bir Çocuğun Annesi Olmak

Year 2021, Volume: 13 Issue: 2, 282 - 291, 30.06.2021
https://doi.org/10.18863/pgy.775939

Abstract

Kemik iliği nakli çocuklarda başlıca hematolojik malignansi, immun yetmezlik ve kemik iliği yetmezliği gibi morbidite ve mortalite oranı oldukça yüksek hastalıklarda kullanılan bir tedavi yöntemidir. Kemik iliği nakli bu hastalıkların tedavisinde başarı şansını artırmasına ve yaşam süresini uzatmasına karşın, bazı sistemik komplikasyonları da beraberinde getirmektedir. Çocuk için oldukça zor olan bu süreçte en çok etkilenen aile bireyinin ise genellikle anne olduğu bildirilmektedir. Uzun süre özenli bakım verme annede bakım yükü oluşturmaktadır. Ayrıca nakilin başarılı olup olmayacağı, hastalığın tekrarlaması, çocuğu kaybetme, kayıptan sonra yaşamın nasıl devam edeceği gibi düşünceler annede belirsizliğe, ayrılık anksiyetesine ve varoluşsal kaygılara neden olmaktadır. Çocuğu kemik iliği nakli olan annelerde depresyon, anksiyete bozukluğu ve post travmatik stres bozukluğu gibi psikiyatrik bozuklukların oldukça sık görüldüğü bildirilmektedir. Hem çocuk hem de anne için travmatik olan bu süreçte primer tedavi ekibi ile birlikte Konsültasyon Liyezon Psikiyatrisi (KLP) hemşiresinin rolü önemlidir. Bu sebeple bu derleme, çocuğu kemik iliği nakli olmuş annelerin deneyimlerini, yaşadığı çok boyutlu sorunlarını açıklamak ve bu süreçte KLP hemşiresinin rolünü tanımlamak amacıyla yazılmıştır.

References

  • Açar A (2005) Organ transplantasyonu yapılan çocukların ebeveynlerinin yaşam kalitesi ve bakım yükünün belirlenmesi (Yüksek lisans tezi). Urfa, Harran Üniversitesi.
  • Aranda SK, Hayman-White K (2001) Home caregivers of the person with advanced cancer. Cancer Nurs, 24:300-306.Asadi M, Manookian A, Nasarabadi AN (2011) Parents’ experiences of their childeren bone marrow transplantation: a qualitative study. Int J Hematol Oncol Stem Cell Res, 5:1-7.
  • Baran G (2018) The burden of care and life satisfaction of the Turkish mothers of children with cancer. Client-Centered Nursing Carr, 4:175-184.
  • Barrera M, Atenafu E, Doyle J, Berlin-Romalis D, Hancock K (2012) Differences in mothers' and fathers' psychological distress after pediatric SCT: a longitudinal study. Bone Marrow Transplant, 47:934-939.
  • Calhoun LG, Tedeschi RG (2006) The foundations of posttraumatic growth: An expanded framework. In The Handbook of Posttraumatic Growth: Research and Practice, 1st ed. (Eds LG Calhoun, RG Tedeschi):1-23. Mahwah, Lawrence Erlbaum Associates.
  • Çam O, Engin E (2014) Ruh Sağlığı ve Hastalıkları Hemşireliği: Bakım Sanatı, 1. baskı. İstanbul, İstanbul Tıp Kitabevi. Çoban ÖG (2016) Kemik iliği nakli olan çocukların sağlıklı kardeşlerinde psikopatoloji, yaşam kalitesi, travma sonrası stres bozukluğu ve davranış problemlerinin değerlendirilmesi (Uzmanlık Tezi). Antalya, Akdeniz Üniversitesi.
  • Dinleyici M, Dağlı FŞ (2018) Kronik hastalığı olan çocukların sağlıklı kardeşlerinde yaşam kalitesi değerlendirilmesi. Turk Pediatri Ars, 53:205-213.
  • Engin E, Çam O, Demirkol H, Doğan EÖ. The effect of psychoeducation on care burden applied to mothers of children underwent bone marrow transplantation. (Ege University Scientific Research Projects Coordination, 16-HYO-002).
  • Er M (2006) Çocuk, hastalık, anne-babalar ve kardeşler. Çocuk Sağlığı ve Hastalıkları Dergisi, 49:155-168.
  • Ersoy E (2009) Cinsiyet kültürü içerisinde kadın ve erkek kimliği (Malatya Örneği). Fırat Üniversitesi Sosyal Bilimler Dergisi,19:209-230.
  • Forinder U (2004) Bone marrow transplantation from a parental perspective. J Child Health Care, 8: 134-148.
  • 1Forinder U, Norberg AL (2014) Posttraumatic growth and support among parents whose children have survived stem cell transplantation. J Child Health Care,18: 326-335.
  • Gallagher R, Gormley DK (2009) Perceptions of stress, burnout, and support systems in pediatric bone marrow transplantation nursing. Clin J Oncol Nurs,13:681-685.
  • Geçgin FM, Sahranç Ü (2017) Belirsizliğe tahammülsüzlük ile psikolojik iyi oluş arasındaki ilişki. Sakarya University Journal of Education, 7:739-755.
  • Girgis A, Lambert S, Johnson C, Waller A, Currow D (2013) Psysical, psychosocial, relationship, and economic burden of caring for people with cancer. J Child Health Care, 9:197-202.
  • Gribich CF, Maddocks I, Parker D (2001) Family caregivers, their needs, and home based palliative care services. J Fam Health,7:171-188.
  • Kars MC, Grypdonck MH, van Delden JJ (2011) Being a parent of a child with cancer throughout the endof-life course. Oncol Nurs Forum, 38:260-271.
  • Koca E, Akpek G (2006) Graft-versus-host hastalığı ve tedavi yöntemleri. Turkiye Klinikleri,2:23-32.
  • Kocaman N (2005) Konsültasyon liyezon psikiyatrisi hemşireliği ve rolü nedir? Anadolu Hemşirelik ve Sağlık Bilimleri Dergisi,8:107-118.
  • Manne S, DuHamel K, Ostroff J, Parsons S, Martini RD, Williams ES et al. (2004) Anxiety, depressive, and post traumaticstress disorder among mothers of pediatric survivor of hematopoietic stem cell transplantation. Pediatrics,113:1700-1707.
  • Manne S, Ostroff J, Mertini R, Sexson S, Mee L, DuHamel K (2001) Anxiety and depression in mothers of children undergoing bone marrow transplant: syptom prevalence and use of the beck depression and beck anxiety inventories as screening instruments. J Consult Clin Psychol, 69:1037-1047.
  • Matteo B, Ceron M (2016) Uncertainty in pediatric bone marrow transplantation: a qualitative analysis about parents’ perspective. Nurse Educ Pract,6:111-117.
  • Mayer DK, Tighiouart H, Terrin N, Stewart S, Peterson E, Jeruss S et al. (2009) A brief report of caregiver needs and resource utilization during pediatric hematopoietic stem cell transplantation. J Pediatr Oncol Nurs,26:223-229.
  • Morrison CF , Morris EJ (2017) The Practices and meanings of care for nurses working on a pediatric bone marrow transplant unit. J Pediatr Oncol Nurs, 34:214-221.
  • Nelson EA, Gleaves L, Nuss S (2003) Mothers’s responses during child’s stem cell transplantation: pilot study. J Pediatr Nurs, 29:219-223.
  • Oppenheim D, Valteau-Couanet D, Vasselon S, Hartmann O (2002) How do parents perceive high-dose chemotherapy and autologous stem cell transplantation for their children. Bone Marrow Transplant, 30:35-39.
  • Önen ŞŞ (2014) Kemik iliği nakli yapılmış yaşayan çocuklarda solunum ve dolaşım komplikasyonlarının erken ve geç dönem değerlendirilmesi (Uzmanlık tezi). İzmir, Ege Üniversitesi.
  • Packman W, Weber S, Wallace J, Bugescu N (2010) Psychological effects of hematopoietic SCT on pediatric patients, siblings and parents: a review. Bone Marrow Transplant,45:1134-1146.
  • Peykerli G (2003) Kemik iliği naklinin psikososyal boyutu. Türkiye Klinikleri J Hematol,1:134-137.
  • Phipps S, Dunavant M, Lensing S, Rai SN (2004) Patterns of distress in parents of children undergoing stem cell transplantation. Pediatr Blood Cancer,43:267-274.
  • Tanzi EM (2011) Health-related quality of life of hematopoietic stem cell transplant childhood survivors: state of the science. J Pediatr Oncol Nurs, 28:191-202.
  • Taşkıran G, Adanır AS. Özatalay S (2016) Living with the unknomn: posttraumatic stress disorder in pediatric bone marrow transplantation survivors and their mother. J Pediatr Hematol Oncol,33:209-218.
  • Virtue MS, Manne SL, Mee L, Bartell A, Sands S, Gajda TM et al. (2014) Psychological distress and psychiatric diagnoses among primary caregivers of children undergoing hematopoietic stem cell transplant: an examination of prevalence, correlates, and racial/ethnic differences. Gen. Hosp. Psychiatry,36:620-626.
  • Vrijmoet-Wiersma CMJ, Egeler RM, Koopman HM, Norberg AL, Grootenhuis MA (2009) Parental stress before, during, and after pediatric stem cell tranplantation: a review article. Support Care Cancer,17:1435-1443.
  • Yabroff KM, Kim Y (2009) Time costs associated with informal caregiver for cancer survivors. Cancer,115;4362-4373. Yeşilipek MA (2014) Çocuklarda hematopoetik kök hücre nakli. Turk Pediatri Ars,49: 91-98.
  • Yılmaz MC, Aksoylar S, Kansoy S (2013) The informational needs of mothers about physical care at home for children who underwent stem cell transplants. Int J Caring Sci,6:106-113.
  • Zebrack B, Chesler M, Orbuch TL, Parr C (2002) Mothers of survivors of childhood cancer: their worries and concerns. J Psychosoc Oncol, 20:1-25.

A Life in Purgatory: Being the Mother of a Bone Marrow Transplant Child

Year 2021, Volume: 13 Issue: 2, 282 - 291, 30.06.2021
https://doi.org/10.18863/pgy.775939

Abstract

Bone marrow transplantation is a therapy used for children who have certain diseases with high rates of morbidity and mortality as hematologic malignancies, immune deficiency and bone marrow failure. Bone marrow transplantation increase the chances of success in the treatment of this diseases and prolongs lifespan of children, it may also cause some systemic complications as well. During this rather difficult process, particularly for children, it is reported that among the family members, it is often the mother who is affected the most. Long-term attentive care creates a great burden for the mother. Moreover, concerns about whether transplantation will be successful or not, recurrence of the disease, loss of child, how life will continue after loss cause uncertainty, resulting in separation anxiety and existential anxiety for the mother. It is reported that mental illnesses such as depression, anxiety disorder and post traumatic stress disorder are common among those mothers whose children underwent bone marrow transplantations. In this process, which is traumatic for both the child and the mother, the role of the consultant liaison psychiatry (CLP) nurse together with the primary treatment team is important. Therefore, this review was written to explain the experiences, multidimensional problems of mothers whose children underwent bone marrow transplantation and to describe the role of the consultant liaison psychiatry nurse in this process.

References

  • Açar A (2005) Organ transplantasyonu yapılan çocukların ebeveynlerinin yaşam kalitesi ve bakım yükünün belirlenmesi (Yüksek lisans tezi). Urfa, Harran Üniversitesi.
  • Aranda SK, Hayman-White K (2001) Home caregivers of the person with advanced cancer. Cancer Nurs, 24:300-306.Asadi M, Manookian A, Nasarabadi AN (2011) Parents’ experiences of their childeren bone marrow transplantation: a qualitative study. Int J Hematol Oncol Stem Cell Res, 5:1-7.
  • Baran G (2018) The burden of care and life satisfaction of the Turkish mothers of children with cancer. Client-Centered Nursing Carr, 4:175-184.
  • Barrera M, Atenafu E, Doyle J, Berlin-Romalis D, Hancock K (2012) Differences in mothers' and fathers' psychological distress after pediatric SCT: a longitudinal study. Bone Marrow Transplant, 47:934-939.
  • Calhoun LG, Tedeschi RG (2006) The foundations of posttraumatic growth: An expanded framework. In The Handbook of Posttraumatic Growth: Research and Practice, 1st ed. (Eds LG Calhoun, RG Tedeschi):1-23. Mahwah, Lawrence Erlbaum Associates.
  • Çam O, Engin E (2014) Ruh Sağlığı ve Hastalıkları Hemşireliği: Bakım Sanatı, 1. baskı. İstanbul, İstanbul Tıp Kitabevi. Çoban ÖG (2016) Kemik iliği nakli olan çocukların sağlıklı kardeşlerinde psikopatoloji, yaşam kalitesi, travma sonrası stres bozukluğu ve davranış problemlerinin değerlendirilmesi (Uzmanlık Tezi). Antalya, Akdeniz Üniversitesi.
  • Dinleyici M, Dağlı FŞ (2018) Kronik hastalığı olan çocukların sağlıklı kardeşlerinde yaşam kalitesi değerlendirilmesi. Turk Pediatri Ars, 53:205-213.
  • Engin E, Çam O, Demirkol H, Doğan EÖ. The effect of psychoeducation on care burden applied to mothers of children underwent bone marrow transplantation. (Ege University Scientific Research Projects Coordination, 16-HYO-002).
  • Er M (2006) Çocuk, hastalık, anne-babalar ve kardeşler. Çocuk Sağlığı ve Hastalıkları Dergisi, 49:155-168.
  • Ersoy E (2009) Cinsiyet kültürü içerisinde kadın ve erkek kimliği (Malatya Örneği). Fırat Üniversitesi Sosyal Bilimler Dergisi,19:209-230.
  • Forinder U (2004) Bone marrow transplantation from a parental perspective. J Child Health Care, 8: 134-148.
  • 1Forinder U, Norberg AL (2014) Posttraumatic growth and support among parents whose children have survived stem cell transplantation. J Child Health Care,18: 326-335.
  • Gallagher R, Gormley DK (2009) Perceptions of stress, burnout, and support systems in pediatric bone marrow transplantation nursing. Clin J Oncol Nurs,13:681-685.
  • Geçgin FM, Sahranç Ü (2017) Belirsizliğe tahammülsüzlük ile psikolojik iyi oluş arasındaki ilişki. Sakarya University Journal of Education, 7:739-755.
  • Girgis A, Lambert S, Johnson C, Waller A, Currow D (2013) Psysical, psychosocial, relationship, and economic burden of caring for people with cancer. J Child Health Care, 9:197-202.
  • Gribich CF, Maddocks I, Parker D (2001) Family caregivers, their needs, and home based palliative care services. J Fam Health,7:171-188.
  • Kars MC, Grypdonck MH, van Delden JJ (2011) Being a parent of a child with cancer throughout the endof-life course. Oncol Nurs Forum, 38:260-271.
  • Koca E, Akpek G (2006) Graft-versus-host hastalığı ve tedavi yöntemleri. Turkiye Klinikleri,2:23-32.
  • Kocaman N (2005) Konsültasyon liyezon psikiyatrisi hemşireliği ve rolü nedir? Anadolu Hemşirelik ve Sağlık Bilimleri Dergisi,8:107-118.
  • Manne S, DuHamel K, Ostroff J, Parsons S, Martini RD, Williams ES et al. (2004) Anxiety, depressive, and post traumaticstress disorder among mothers of pediatric survivor of hematopoietic stem cell transplantation. Pediatrics,113:1700-1707.
  • Manne S, Ostroff J, Mertini R, Sexson S, Mee L, DuHamel K (2001) Anxiety and depression in mothers of children undergoing bone marrow transplant: syptom prevalence and use of the beck depression and beck anxiety inventories as screening instruments. J Consult Clin Psychol, 69:1037-1047.
  • Matteo B, Ceron M (2016) Uncertainty in pediatric bone marrow transplantation: a qualitative analysis about parents’ perspective. Nurse Educ Pract,6:111-117.
  • Mayer DK, Tighiouart H, Terrin N, Stewart S, Peterson E, Jeruss S et al. (2009) A brief report of caregiver needs and resource utilization during pediatric hematopoietic stem cell transplantation. J Pediatr Oncol Nurs,26:223-229.
  • Morrison CF , Morris EJ (2017) The Practices and meanings of care for nurses working on a pediatric bone marrow transplant unit. J Pediatr Oncol Nurs, 34:214-221.
  • Nelson EA, Gleaves L, Nuss S (2003) Mothers’s responses during child’s stem cell transplantation: pilot study. J Pediatr Nurs, 29:219-223.
  • Oppenheim D, Valteau-Couanet D, Vasselon S, Hartmann O (2002) How do parents perceive high-dose chemotherapy and autologous stem cell transplantation for their children. Bone Marrow Transplant, 30:35-39.
  • Önen ŞŞ (2014) Kemik iliği nakli yapılmış yaşayan çocuklarda solunum ve dolaşım komplikasyonlarının erken ve geç dönem değerlendirilmesi (Uzmanlık tezi). İzmir, Ege Üniversitesi.
  • Packman W, Weber S, Wallace J, Bugescu N (2010) Psychological effects of hematopoietic SCT on pediatric patients, siblings and parents: a review. Bone Marrow Transplant,45:1134-1146.
  • Peykerli G (2003) Kemik iliği naklinin psikososyal boyutu. Türkiye Klinikleri J Hematol,1:134-137.
  • Phipps S, Dunavant M, Lensing S, Rai SN (2004) Patterns of distress in parents of children undergoing stem cell transplantation. Pediatr Blood Cancer,43:267-274.
  • Tanzi EM (2011) Health-related quality of life of hematopoietic stem cell transplant childhood survivors: state of the science. J Pediatr Oncol Nurs, 28:191-202.
  • Taşkıran G, Adanır AS. Özatalay S (2016) Living with the unknomn: posttraumatic stress disorder in pediatric bone marrow transplantation survivors and their mother. J Pediatr Hematol Oncol,33:209-218.
  • Virtue MS, Manne SL, Mee L, Bartell A, Sands S, Gajda TM et al. (2014) Psychological distress and psychiatric diagnoses among primary caregivers of children undergoing hematopoietic stem cell transplant: an examination of prevalence, correlates, and racial/ethnic differences. Gen. Hosp. Psychiatry,36:620-626.
  • Vrijmoet-Wiersma CMJ, Egeler RM, Koopman HM, Norberg AL, Grootenhuis MA (2009) Parental stress before, during, and after pediatric stem cell tranplantation: a review article. Support Care Cancer,17:1435-1443.
  • Yabroff KM, Kim Y (2009) Time costs associated with informal caregiver for cancer survivors. Cancer,115;4362-4373. Yeşilipek MA (2014) Çocuklarda hematopoetik kök hücre nakli. Turk Pediatri Ars,49: 91-98.
  • Yılmaz MC, Aksoylar S, Kansoy S (2013) The informational needs of mothers about physical care at home for children who underwent stem cell transplants. Int J Caring Sci,6:106-113.
  • Zebrack B, Chesler M, Orbuch TL, Parr C (2002) Mothers of survivors of childhood cancer: their worries and concerns. J Psychosoc Oncol, 20:1-25.
There are 37 citations in total.

Details

Primary Language Turkish
Subjects Social Psychology
Journal Section Review
Authors

Esra Engin 0000-0003-0836-1532

Mahire Olcay Çam 0000-0002-6115-7306

Hacer Demirkol 0000-0002-8639-8376

Publication Date June 30, 2021
Acceptance Date October 27, 2020
Published in Issue Year 2021 Volume: 13 Issue: 2

Cite

AMA Engin E, Çam MO, Demirkol H. Arafta Bir Yaşam: Kemik İliği Nakli Olan Bir Çocuğun Annesi Olmak. Psikiyatride Güncel Yaklaşımlar - Current Approaches in Psychiatry. June 2021;13(2):282-291. doi:10.18863/pgy.775939

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Psikiyatride Güncel Yaklaşımlar - Current Approaches in Psychiatry is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.