Qualitative Evaluation of Effectiveness of 'Family Hope Partner Project' for Pediatric Cancer Patients and their Families

소아암 환아와 가족을 위한 가족희망파트너사업의 효과에 대한 질적 평가

The purpose of this study is to identify the overall effect of Family Hope Partner Project conducted by the Korean Association for Children with Leukemia and Cancer (KACLC) for pediatric cancer patients and their families and provide empirical basic data for the support of them. For this purpose, this study applied a qualitative research methodology as follows; 6 parents and 5 children who used the service for more than one year through the Family Hope Partner Project participated in the interviews. The interviews were conducted from June to July 2016, and the collected data were analyzed through the processes of qualitative analysis. The results of this study are as follows. Pediatric cancer patients and their families who were previously confronted with problems such as a 'barrier of severe pain' and 'swirling anxiety and exhaustion' experienced multi-dimensional effects, thanks to the intervention of 'a genuine master serving as a stepping stone toward their recovery and growth', who were linked to the pediatric cancer patients through Family Hope Partner Project. In other words, they experienced positive effects such as 'support for overall rehabilitation of pediatric patients', 'improvement of family relations', 'relief of needs for social relations', and 'liberation from pressure'. The results of this study were meaningful, in that it substantially corroborated the multidimensional effects of the Family Hope Partner Project, and presented the development direction of the Family Hope Partner Project, which was the first of its kind at home and abroad initiated by the Korean Association for Children with Leukemia and Cancer (KACLC) for pediatric cancer patients and their families.

본 연구는 소아암 환아와 가족을 위해 한국백혈병소아암협회에서 실시된 '가족희망파트너사업' 의 총체적인 효과를 규명하고 이들에 대한 지원의 실증적 기초자료를 마련하는데 그 목적이있다. 이를 위해 본 연구는 '가족희망파트너사업'을 통해 1년 이상 서비스를 이용 중인 보호자6명, 소아암 아동 5명을 2016년 6~7월까지 인터뷰하였으며, 수집된 자료는 질적분석 과정을거쳐 해석되었다. 본 연구의 결과는 다음과 같다. 소아암 환아와 가족은 '혹독한 아픔의 장벽' 과 '소용돌이치는 불안과 소진'에 직면해있었는데, '가족희망파트너사업'을 통해 연계된 '회복과 성장의 디딤돌이 되어준 참 스승'으로 말미암아 다차원적인 효과를 경험하게 되었다. 즉'환아의 전반적인 재활 지원', '가족관계의 향상', '사회적 관계에 대한 해갈(解渴)', '압박에서의 해방'이라는 긍정적인 효과들을 체험하게 되었다. 본 연구는 '가족희망파트너사업'의 다차원적인 효과를 심층적으로 확증하였으며, 한국백혈병소아암협회에 의해서 소아암 환아와 가족을 위해 국내외적으로 최초로 시도된 '가족희망파트너사업'의 방향성을 모색하였다는데 의의가있다.