Journal of Hospice and Palliative Care

Korean Society for Hospice and Palliative Care (한국호스피스완화의료학회)
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Palliative Care Practitioners' Perception toward Pediatric Palliative Care in the Republic of Korea

소아완화의료에 대한 호스피스 완화의료 전문기관 종사자의 인식

  • Moon, Yi Ji (Integrative Care Hub, Seoul National University Hospital) ;
  • Shin, Hee Young (Department of Pediatrics, Seoul National University Hospital) ;
  • Kim, Min Sun (Department of Pediatrics, Seoul National University Hospital) ;
  • Song, In Gyu (Central Hospice Center, National Cancer Center) ;
  • Kim, Cho Hee (Integrative Care Hub, Seoul National University Hospital) ;
  • Yu, Juyoun (Department of Nursing, Suwon Women's University) ;
  • Park, Hye Yoon (Department of Psychiatry, Seoul National University Hospital)
  • 문이지 (서울대학교병원 통합케어센터) ;
  • 신희영 (서울대학교병원 소아청소년과) ;
  • 김민선 (서울대학교병원 소아청소년과) ;
  • 송인규 (국립암센터 중앙호스피스센터) ;
  • 김초희 (서울대학교병원 통합케어센터) ;
  • 유주연 (수원여자대학 간호학과) ;
  • 박혜윤 (서울대학교병원 정신건강의학과)
  • Received : 2018.10.11
  • Accepted : 2019.02.26
  • Published : 2019.03.01
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Abstract

Purpose: This study was performed to investigate the current status of pediatric palliative care provision and how it is perceived by the palliative care experts. Methods: A descriptive study was conducted with 61 hospice institutions. From September through October 2017, a questionnaire was completed by experts from the participating institutions. Data were analyzed using SPSS 21.0. Results: Among 61 institutions, palliative care is currently provided for pediatric cancer patients by 11 institutions (18.0%), all of which are concentrated in Seoul, Incheon and Gyeonggi and Gyengsang provinces; 85.2% of all do not plan to provide specialized pediatric palliative care in the future. According to the experts, the main barriers in providing pediatric palliative care were the insufficient number of trained specialists regardless of the delivery type. Experts said that it was appropriate to intervene when children were diagnosed with cancer that was less likely to be cured (33.7%) and to move to palliative care institutions when their conditions worsened (38.2%); and it was necessary to establish a specialized pediatric palliative care system, independent from the existing institutions for adult patients (73.8%). Conclusion: It is necessary to develop an education program to establish a nationwide pediatric palliative care centers. Pediatric palliative care intervention should be provided upon diagnosis rather than at the point of death. Patients should be transferred to palliative care institutions after intervention by their existing pediatric palliative care team at the hospital is started.

목적: 본 연구는 소아완화의료 대상 환자와 가족을 돌보는 전문기관 종사자의 환자진료 및 시스템 연계에 대한 인식을 알아보기 위해 수행된 서술적 조사 연구이다. 방법: 자료 수집은 호스피스 완화의료 전문기관(이하 전문기관)에 근로하는 전문가를 대상으로 2017년 9월부터 10월까지 진행되어 총 61건의 자료를 수거하였다. 결과: 소아완화의료를 입원형, 자문형, 가정형 중 한가지 형태로라도 제공하고 있는 기관은 11기관(18.0%)이었으며, 지역별 분포는 서울, 경기, 인천, 경상 지역에 집중되어 있어 기타 지역에서는 활용 가능한 자원이 전무한 상황이다. 개입 시 장애요인은 '훈련된 전문인력을 확보하는 것의 어려움'이며, 비암성 소아청소년 환자의 경우 '예후 및 경과 예측의 어려움 47.5% (n=28)' 으로 확인되었다. 소아완화의료 구성형태는 '성인과 다른 소아청소년의 특성, 소아청소년 전문인력 필요, 관리 및 제도보완 필요'를 이유로 응답자 중 73.8% (n=45)이 별도의 소아완화의료팀 구성이 필요하다는 의사를 밝혔다. 개입시점은 '완치가능성이 적은 소아암 진단 시'부터 진행해야 하는 것이 33.7% (n=33)로 가장 높았으나 의뢰시점은 '사망시점을 예상하기 어려우나 지속적 악화상태인 경우'가 38.2% (n=39)로 가장 높아, 전문기관으로 의뢰 전 기존 치료 병원에서 개입을 진행되는 것을 선호하였다. 응답기관 중 14.8% (n=9)만이 추후 소아완화의료 제공에 참여할 의사가 있다고 밝혔다. 결론: 2018년 두 곳으로 시작한 소아청소년 완화의료 시범사업기관에 더해 지역별로 배치되어 있는 전문기관에서 소아완화의료를 제공할 수 있도록 하여 자원의 접근성을 높일 필요가 있다. 별도 소아완화의료 구성의 필요성을 인정함에도 소아완화의료를 제공하는 것에 대한 부담감으로 실제적 서비스를 제공하는 데 어려움이 있기에 우선적으로 소아완화의료 전문가를 양성하고 교육 개발 및 의뢰 시점에 대한 논의 등을 통하여 소아완화의료 확산에 대한 현실적 논의를 진행해야 할 것이다.

Keywords

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