희귀·난치성 질환자의 심리사회적 건강에 영향을 미치는 요인에 관한 연구 = Analysis of elements affecting the socio-psychological wellbeing of people with the rare and intractable disorder

다국어 초록 (Multilingual Abstract)

The purpose of this study is to find affecting elements on the socio-psychological wellbeing of people with the rare and intractable disorder. This research was conducted with 342 patients with rare and intractable disorder. The result of study calculated psychological wellbeing, which was estimated in order of medical approach, family structure, social support and stigma, and economic sufficiency. This research has its meaning in that it dealt with not only medical assistance but also the socio-psychological support system taking into consideration characteristics of social welfare policy for the people with the rare and intractable disorder. And this research was significant in demonstrating that the concept of socio- psychological wellbeing is the most important notion to explain the welfare policy needs of people with rare and intractable disorder and other disabled people.

참고문헌 (Reference)

1 장원기, "희귀질환자에 대한 보호지원 계획 수립에 관한 연구" 한국보건사회연구원 2000

2 권은경, "희귀유전대사질환 아동 어머니의 양육 스트레스와 죄책감" 병원간호사회 14 (14): 153-163, 2008

3 "희귀난치성질환헬프라인"

4 보건복지부, "희귀난치성질환자 의료비지원사업 안내" 보건복지부 2010

5 이해식, "희귀·난치성환자의 사회복지적 지원체계 수립방안에 관한 연구" 한일장신대학교 기독교사회복지대학원 2004

6 김재용, "희귀·난치성 질환자 관리사업의 영향평가와 발전방안 연구" 한국보건사회연구원 2002

7 김현주, "희귀 난치성 질환 등록체계 구축등에 관한 연구" 아주대학교 의과대학·보건복지부 2003

8 전진호, "혈액투석환자의 자기관리 수행도와 이에 영향을 미치는 요인" 16 (16): 149-162, 1999

9 양혜주, "혈액투석 환자와 복막투석 환자의 삶의 질" 2 (2): 96-101, 1998

10 신선인, "한국판 일반정신건강척도(KGHQ)의 개발에 관한 연구" 46 : 210-235, 2001

11 김현주, "포괄적인 희귀질환 지원정책 수립의 필요성" 국민의료보험관리공단 2003

12 박상진, "정부의 희귀·난치성질환 의료비 지원사업 5년 고찰(문제와 개선점)" 2005

13 김혜란, "일 도시 보건소 희귀난치질환자 보건관리 실태와 삶의 질" 전남대학교 2004

14 박은숙, "만성질환아 어머니의 아동질병으로 인한 불확실성 경험" 4 (4): 207-220, 1998

15 "http://www.eurordis.org/IMG/pdf/Princeps_document-HU.pdf"

16 "http://ec.europa.eu/health/ph_threats/non_com/rare_diseases_en.htm"

17 Department of Health and Aged Care, "The orphan drug program and improving community access to effective drugs for rare disease" 2001

18 Anderson, JR., "The nurse’s role in cancer rehabilitation" 12 (12): 85-94, 1989

19 Jewell, E. J., "The New Oxford American Dictionary" 2001

20 Zimet, G. D., "The Multi-dimension scale of Perceived Social Support" 52 (52): 31-41, 1998

21 Dellve, L., "Stress and well-being among parents of children with rare diseases: A perspective intervention study" 53 (53): 392-402, 2006

22 Gregory, R., "Recovery from depression associated with Guillain Barre syndrom" 24 : 129-135, 2003

23 Gant, C., "Overcoming obstacles: Nursing student with rare disease finds success" 31 : 30-, 2001

24 NORD, "Out of darkness, into the light" National Organization for Rare Disorders. INC. 2002

25 NORD, "National Organization for Rare Diseases" Island Dreams, LI Support Group 2003

26 Chuansumrit, A., "Meeting the needs of hamophilic children in developing countries" 4 (4): 19-23, 1998

27 Vital, S. A., "Living with a rare disease: Mycosis Fungoides" New York University 2005

28 Joachim, G., "Life with a rare chronic disease: the scleroderma experience" 42 (42): 598-606, 2003

29 Walker, M., "Face to face with Sturge- Weber syndrome" 4 : 74-82, 1999

30 Burckhardt, C. S., "Coping strategies of the chronically ill Nursing" 22 (22): 543-549, 1987

31 Berglund, B., "Acceptance of disability and sense of coherence in individuals with Ehlers-Danlos syndrome" 12 (12): 770-777, 2003

32 Nishio, K., "A Family affected by mitochondrial encephalomyopathy: A nursing protocol" 11 : 195-203, 1997