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Communication in Pediatric Palliative

Yıl 2021, Cilt 14, Sayı 2, 237 - 242, 30.08.2021
https://doi.org/10.52976/vansaglik.726582

Öz

Pediatric palliative care is child- and family-centered care provided for a child with a progressive, advanced, life-limiting disease for whom the primary goal is to optimize the quality of life. Pediatric palliative care (PPC) is a holistic interdisciplinary care approach with the goal of evaluating and minimizing suffering while promoting personal and spiritual growth. (PPC differs fundamentally from adult palliative care in that it involves parents in decision making and is attentive to the diverse developmental stages represented within service cohorts. Palliative care has always been a part of the care of children. It includes any intervention that focuses on relieving suffering, slowing the progression of disease, and improving quality of life at any stage of disease. Palliative care requires a total and active approach, with transparent, communicated, agreed provision of appropriate and proportionate care. Advance planning enables management of both reversible and chronic aspects of the condition, as well as utilizing parallel planning when end of life approaches. High quality communication and decision-making may influence acceptance of an PPC program’s involvement in care and the timing of its initiation reduce the number of burdensome interventions in the final months of life, or facilitate achievement of care goals. Investigating PPC communication approaches and outcomes can help improve the quality of care services for children and families. Nurses are key position to the integration of the family in this type of care. Nurses are also key players to improved communication among the health care team. This article will discuss pediatric palliative care as a part of family-centered care and the critical role nurses play.

Kaynakça

  • Bakitas MA, Tosteson TD, Li Z, Lyons KD, Hull JG, Li Z, et al. Early versus delayed initiation of concurrent palliative oncology care: patient outcomes in the enable ill randomized controlled trial. J Clin Oncol 2015; 33(13): 1438-45.
  • Blackford J, Street AF. Facilitating advance care planning in community palliative care: conversation starters across the client journey. Int J Palliat Nurs 2013; 19(3): 132-9.
  • Boyd D, Merkh K, Rutledge DN, Randall V. Nurses’ perceptions and experiences with end-of-life communication and care. Oncol Nurs Forum 2011; 38(3): E229-39.
  • Cassel JB, Albrecht TA. Emerging models of providing oncology palliative care. Semin Oncol Nurs 2018; 34(3): 202-14.
  • Charlebois J, Cyr C. Quality indicators for paediatric palliative care. Paediatr Child Health 2015; 20(3): 145-7.
  • Ciriello AG, Dizon ZB, October TW. Speaking a different language: a qualitative analysis comparing language of palliative care and pediatric intensive care unit physicians. Am J Hosp Palliat Care 2018; 35(3): 384-9.
  • Côté A-J, Payot A, Gaucher N. Palliative care in the pediatric emergency department: findings from a qualitative study. Ann Emerg Med 2019; 74(4): 481-90.
  • Dussel V, Kreicbergs U, Hilden JM, Watterson J, Moore C, Turner BG, et al. Looking beyond where children die: determinants and effects of planning a child’s location of death. J Pain Symptom Manage 2009; 37(1): 33-43.
  • Fallowfield L, Jenkins V. Communicating sad, bad, and difficult news in medicine. Lancet 2004; 363(9405): 312-9.
  • Garten L, Bührer C. Pain and distress management in palliative neonatal care. Semin Fetal Neonatal Med 2019; 24(4): 101008.
  • Hancock HS, Pituch K, Uzark K, Bhat P, Fifer C, Silveira M, et al. A randomised trial of early palliative care for maternal stress in infants prenatally diagnosed with single-ventricle heart disease. Cardiology in the Young 2018; 28(4): 561-70.
  • Helft PR, Chamness A, Terry C, Uhrich M. Oncology nurses’ attitudes toward prognosis-related communication: a pilot mailed survey of oncology nursing society members. Oncol Nurs Forum 2011; 38(4): 468-74.
  • Henner N, Boss RD. Neonatologist training in communication and palliative care. Semin Perinatol 2017; 41(2): 106-10.
  • Kassam A, Skiadaresis J, Alexander S, Wolfe J. Differences in end-of-life communication for children with advanced cancer who were referred to a palliative care team. Pediatr Blood Cancer 2015; 62(8): 1409-13.
  • Kenner C. The role of neonatal nurses in palliative care. Newborn Infant Nurs Rev 2016; 16(2): 74-7.
  • Lotz JD, Jox RJ, Borasio GD, Führer M. Pediatric advance care planning from the perspective of health care professionals: a qualitative interview study. Palliat Med 2015; 29(3): 212-22.
  • Melnyk BM, Alpert-Gillis L, Feinstein NF, Crean HF, Johnson J, Fairbanks E, et al. Creating opportunities for parent empowerment: program effects on the mental health/coping outcomes of critically ill young children and their mothers. Pediatrics 2004; 113(6): e597-e607.
  • Mierendorf SM, Gidvani V. Palliative care in the emergency department. Perm J 2014; 18(2): 77-85.
  • Ritchie CS, Ceronsky L, Coté TR, Herr S, Pantilat SZ, Smith TJ, et al. Palliative care programs: the challenges of growth. J Palliat Med 2010; 13(9): 1065-70.
  • Stayer D. Pediatric palliative care: a conceptual analysis for pediatric nursing practice. J Pediatr Nurs 2012; 27(4): 350-6.
  • Streuli JC, Widger K, Medeiros C, Zuniga-Villanueva G, Trenholm M. Impact of specialized pediatric palliative care programs on communication and decision-making. Patient Educ Couns 2019; 102(8): 1404-12.
  • Thompson A. Paediatric palliative care. Paediatr Child Health 2015; 25(10): 458-62.
  • Ullrich CK, Lehmann L, London WB, Guo D, Sridharan M, Koch R, et al. End-of-life care patterns associated with pediatric palliative care among children who underwent hematopoietic stem cell transplant. Biol Blood Marrow Transplant 2016; 22(6): 1049-55.
  • Uthaya S, Mancini A, Beardsley C, Wood D, Ranmal R, Modi N. Managing palliation in the neonatal unit. Arch Dis Child Fetal Neonatal Ed 2014; 99(5): F349-52.
  • Wittenberg-Lyles E, Goldsmith J, Platt CS. Palliative care communication. Semin Oncol Nurs 2014; 30(4): 280-6.
  • Wolfe J, Hammel JF, Edwards KE, Duncan J, Comeau M, Breyer J, et al. Easing of suffering in children with cancer at the end of life: is care changing? J Clin Oncol. 2008; 26(10): 1717-23.

Pediatrik Palyatif Bakımda İletişim

Yıl 2021, Cilt 14, Sayı 2, 237 - 242, 30.08.2021
https://doi.org/10.52976/vansaglik.726582

Öz

Pediatrik palyatif bakım (PPB), birincil amacın yaşam kalitesini optimize etmek olduğu, ilerleyici, ileri ve yaşamı sınırlayıcı bir hastalığı olan bir çocuğa sağlanan, çocuk ve aile merkezli bir bakımdır. PPB, kişisel ve ruhsal gelişimi teşvik ederken, acıyı değerlendirme ve en aza indirgeme amacı olan bütünsel bir disiplinlerarası bakım yaklaşımıdır. Palyatif bakım her zaman çocukların bakımının bir parçası olmuştur. Hastalığın herhangi bir aşamasında acı çekmeyi hafifletmeye, hastalığın ilerlemesini yavaşlatmaya ve yaşam kalitesini iyileştirmeye odaklanan herhangi bir müdahaleyi içerir. PPB, temel olarak yetişkinlere yönelik palyatif bakımdan farklıdır; çünkü ebeveynleri karar alma sürecine dahil eder ve hizmet kohortlarında temsil edilen çeşitli gelişim aşamalarına özen gösterir. Palyatif bakım, şeffaf, uygun ve orantılı bakımın uygulandığı aktif bir yaklaşımı gerektirir. Bakımın önceden planlaması, durumun hem geriye dönük hem de kronik yönlerinin yönetimini sağlarken, yaşamın sonunda yaklaştığında paralel planlama yapılmasını sağlar. Yüksek kaliteli iletişim ve karar alma, bir pediatrik palyatif bakım programının bakıma katılımını ve başlatılmasının zamanlamasını kabul etmeyi etkileyebilir, yaşamın son aylarında külfetli müdahalelerin sayısını azaltabilir veya bakım hedeflerine ulaşılmasını kolaylaştırabilir. PPB iletişim yaklaşımlarının ve sonuçlarının araştırılması, çocuklar ve aileler için bakım hizmetlerinin kalitesinin artırılmasına yardımcı olabilir. Hemşireler, ailenin bu tür bakım ile bütünleşmesinin anahtar pozisyondadır. Hemşireler ayrıca sağlık ekibi arasındaki iletişimi geliştirmek için kilit oyunculardır. Bu makalede, aile merkezli bakımın bir parçası olarak pediatrik palyatif bakımı ve hemşirelerin oynadığı kritik rolü tartışılacaktır.

Kaynakça

  • Bakitas MA, Tosteson TD, Li Z, Lyons KD, Hull JG, Li Z, et al. Early versus delayed initiation of concurrent palliative oncology care: patient outcomes in the enable ill randomized controlled trial. J Clin Oncol 2015; 33(13): 1438-45.
  • Blackford J, Street AF. Facilitating advance care planning in community palliative care: conversation starters across the client journey. Int J Palliat Nurs 2013; 19(3): 132-9.
  • Boyd D, Merkh K, Rutledge DN, Randall V. Nurses’ perceptions and experiences with end-of-life communication and care. Oncol Nurs Forum 2011; 38(3): E229-39.
  • Cassel JB, Albrecht TA. Emerging models of providing oncology palliative care. Semin Oncol Nurs 2018; 34(3): 202-14.
  • Charlebois J, Cyr C. Quality indicators for paediatric palliative care. Paediatr Child Health 2015; 20(3): 145-7.
  • Ciriello AG, Dizon ZB, October TW. Speaking a different language: a qualitative analysis comparing language of palliative care and pediatric intensive care unit physicians. Am J Hosp Palliat Care 2018; 35(3): 384-9.
  • Côté A-J, Payot A, Gaucher N. Palliative care in the pediatric emergency department: findings from a qualitative study. Ann Emerg Med 2019; 74(4): 481-90.
  • Dussel V, Kreicbergs U, Hilden JM, Watterson J, Moore C, Turner BG, et al. Looking beyond where children die: determinants and effects of planning a child’s location of death. J Pain Symptom Manage 2009; 37(1): 33-43.
  • Fallowfield L, Jenkins V. Communicating sad, bad, and difficult news in medicine. Lancet 2004; 363(9405): 312-9.
  • Garten L, Bührer C. Pain and distress management in palliative neonatal care. Semin Fetal Neonatal Med 2019; 24(4): 101008.
  • Hancock HS, Pituch K, Uzark K, Bhat P, Fifer C, Silveira M, et al. A randomised trial of early palliative care for maternal stress in infants prenatally diagnosed with single-ventricle heart disease. Cardiology in the Young 2018; 28(4): 561-70.
  • Helft PR, Chamness A, Terry C, Uhrich M. Oncology nurses’ attitudes toward prognosis-related communication: a pilot mailed survey of oncology nursing society members. Oncol Nurs Forum 2011; 38(4): 468-74.
  • Henner N, Boss RD. Neonatologist training in communication and palliative care. Semin Perinatol 2017; 41(2): 106-10.
  • Kassam A, Skiadaresis J, Alexander S, Wolfe J. Differences in end-of-life communication for children with advanced cancer who were referred to a palliative care team. Pediatr Blood Cancer 2015; 62(8): 1409-13.
  • Kenner C. The role of neonatal nurses in palliative care. Newborn Infant Nurs Rev 2016; 16(2): 74-7.
  • Lotz JD, Jox RJ, Borasio GD, Führer M. Pediatric advance care planning from the perspective of health care professionals: a qualitative interview study. Palliat Med 2015; 29(3): 212-22.
  • Melnyk BM, Alpert-Gillis L, Feinstein NF, Crean HF, Johnson J, Fairbanks E, et al. Creating opportunities for parent empowerment: program effects on the mental health/coping outcomes of critically ill young children and their mothers. Pediatrics 2004; 113(6): e597-e607.
  • Mierendorf SM, Gidvani V. Palliative care in the emergency department. Perm J 2014; 18(2): 77-85.
  • Ritchie CS, Ceronsky L, Coté TR, Herr S, Pantilat SZ, Smith TJ, et al. Palliative care programs: the challenges of growth. J Palliat Med 2010; 13(9): 1065-70.
  • Stayer D. Pediatric palliative care: a conceptual analysis for pediatric nursing practice. J Pediatr Nurs 2012; 27(4): 350-6.
  • Streuli JC, Widger K, Medeiros C, Zuniga-Villanueva G, Trenholm M. Impact of specialized pediatric palliative care programs on communication and decision-making. Patient Educ Couns 2019; 102(8): 1404-12.
  • Thompson A. Paediatric palliative care. Paediatr Child Health 2015; 25(10): 458-62.
  • Ullrich CK, Lehmann L, London WB, Guo D, Sridharan M, Koch R, et al. End-of-life care patterns associated with pediatric palliative care among children who underwent hematopoietic stem cell transplant. Biol Blood Marrow Transplant 2016; 22(6): 1049-55.
  • Uthaya S, Mancini A, Beardsley C, Wood D, Ranmal R, Modi N. Managing palliation in the neonatal unit. Arch Dis Child Fetal Neonatal Ed 2014; 99(5): F349-52.
  • Wittenberg-Lyles E, Goldsmith J, Platt CS. Palliative care communication. Semin Oncol Nurs 2014; 30(4): 280-6.
  • Wolfe J, Hammel JF, Edwards KE, Duncan J, Comeau M, Breyer J, et al. Easing of suffering in children with cancer at the end of life: is care changing? J Clin Oncol. 2008; 26(10): 1717-23.

Ayrıntılar

Birincil Dil Türkçe
Konular Sağlık Bilimleri ve Hizmetleri
Bölüm Derleme
Yazarlar

Abdullah SARMAN (Sorumlu Yazar)
BINGOL UNIVERSITY, HEALTH SERVICES VOCATIONAL SCHOOL, DEPARTMENT OF MEDICAL SERVICES AND TECHNIQUES, FIRST AND EMERGENCY AID
0000-0002-5081-4593
Türkiye


Suat TUNCAY
BINGOL UNIVERSITY, FACULTY OF HEALTH SCIENCES, DEPARTMENT OF NURSING, DEPARTMENT OF PEDIATRIC NURSING
0000-0001-5493-6507
Türkiye


Emine SARMAN
SULEYMAN DEMIREL UNIVERSITY, FACULTY OF MEDICINE, DEPARTMENT OF BASIC MEDICAL SCIENCES, DEPARTMENT OF HISTOLOGY AND EMBRYOLOGY
0000-0002-4671-9315
Türkiye

Yayımlanma Tarihi 30 Ağustos 2021
Başvuru Tarihi 25 Nisan 2020
Kabul Tarihi 5 Nisan 2021
Yayınlandığı Sayı Yıl 2021, Cilt 14, Sayı 2

Kaynak Göster

APA Sarman, A. , Tuncay, S. & Sarman, E. (2021). Pediatrik Palyatif Bakımda İletişim . Van Sağlık Bilimleri Dergisi , 14 (2) , 237-242 . DOI: 10.52976/vansaglik.726582

ISSN 

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