Journal of Hospice and Palliative Care

Korean Society for Hospice and Palliative Care (한국호스피스완화의료학회)
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Illness Experiences and Palliative Care Needs in Community Dwelling Persons with Cardiometabolic Diseases

심혈관대사질환이 있는 지역사회 거주 환자의 질환경험 및 완화의료 요구

  • Cha, EunSeok (Chungnam National University College of Nursing) ;
  • Lee, JaeHwan (Department of Cardiology, Chungnam National University Hospital, Chungnam National University College of Medicine) ;
  • Lee, KangWook (Department of Nephrology, Chungnam National University Hospital, Chungnam National University College of Medicine) ;
  • Hwang, Yujin (Department of Psychology, Chungnam National University)
  • 차은석 (충남대학교 간호대학) ;
  • 이재환 (충남대학교 의과대학 충남대학교병원 심장내과) ;
  • 이강욱 (충남대학교 의과대학 충남대학교병원 신장내과) ;
  • 황유진 (충남대학교 심리학과)
  • Received : 2018.05.31
  • Accepted : 2019.02.15
  • Published : 2019.03.01
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Abstract

Purpose: This study was conducted to better understand the illness experiences and palliative care needs in community-dwelling persons with cardiometabolic diseases. Methods: This qualitative descriptive study was conducted with 11 patients (and three family members) among 28 patients contacted. Interviews were led by the principal investigator in her office or at participants' home depending on their preference. All interviews were digitally recorded and transcribed by a research assistant. The interviews were analyzed by two independent researchers using a conventional method. Results: Participants' ages ranged from 42 to 82 years (nine men and two women). Three themes were identified: (1) same disease, but different illness experiences; (2) I am in charge of my disease(s); (3) preparation for disease progression. Participants were informed of the name of their disease when they were diagnosed, but not provided with explanation of the diagnosis or meant or how to do self-care to delay the disease progression, which increased the feelings of uncertainty, hopelessness and anxiety. Taking medication was considered to be the primary treatment option and self-care a supplemental one. Advanced care plans were considered when they felt the progression of their disease(s) while refraining from sharing it with their family or health care professionals to save their concerns. All participants were willing to withhold life-sustaining treatment without making any preparation in writing. Conclusion: Education on self-care and advanced care planning should be provided to community-dwelling persons with cardiometabolic diseases. A patient-centered education program needs to be developed for this population.

목적: 본 질적 연구는 비암성 만성 질환이자 중 심혈관대사 질병(심장병, 신장병, 말기 당뇨병)을 가지고 있는 환자들의 "질환 경험"을 이해하고 이들의 완화의료에 대한 요구를 파악하기 위해 수행되었다. 방법: 서술적 질적 연구방법을 통해 환자들의 질환경험 및 자가간호행태, 질병 진행에 대한 준비 등을 알아보았다. 질적 연구 훈련을 받은 연구자가 반구조화된 면담 지침을 통해 연구참여자가 원하는 장소, 시간에 상담을 진행하였다. 면담내용은 필사되었으며, 필사된 내용은 내용분석을 통해 분석되었다. 결과: 연구 참여자는 40대에서 80대의 11명의 만성 질환이자(남성 9명, 여성 2명)였고, 세 개의 범주(같은 질병- 다른 질환경험; 나의 질병, 내 몸의 주체는 나; 질병진행에 대한 준비)가 도출되었다. 연구 참여자들은 자신의 진단명은 알고 있었지만, 의료진으로부터 질병단계 및 진행에 대한 준비, 자가간호 방법, 생애후기계획(돌봄계획) 수립과 관련한 교육을 받은 적이 없었다. 의료진은 질병진행에 따라 처방을 바꿔주는 사람, 약물은 질병치료를 하는 것, 자가간호는 단순 보조적 요법으로 인식되고 있었다. 약복용을 지시대로 규칙적으로 하고 있음에도 불구하고 질병이 진행된다고 느낄 때, 자가간호에 보다 적극적이 되었다. 모든 연구 참여자들이 질병이 진행되고 있다는 것을 느끼고 있었으나, 생애 말기 대비에는 수동적이고 소극적이었다. 많은 환자들이 돌봄계획 수립이나 성년후견인 지정의 필요성에 공감하였으나, 행동으로 옮기지는 못하고 있었다. 결론: 의료진은 비암성 만성질환자의 질환경험을 듣고 질병 관리를 도울 수 있는 치료적 파트너가 되어야 할 것이며, 환자의 건강정보이해능력을 고려한 교육이 제공 되어야 할 것으로 사료된다. 또한 비암성 만성질환자의 웰리빙에 대한 요구와 삶의 질 향상을 지지하는 측면에서 이들을 위한 완화의료 프로그램을 개발, 제공해야 할 것으로 사료된다.

Keywords

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