소아암 환아 가족을 위한 건강돌봄교사파견사업의성과에 관한 혼합연구*

김선희(Kim, Sun Hee) 한국복지상담교육학회 2021 복지상담교육연구 Vol.10 No.2

본 연구는 소아암 환아 가족을 위한 건강돌봄교사파견사업의 성과를 규명하여 실천적 함의를 제공하는데 목적이 있다. 본 연구는 혼합연구방법론을 적용하였다. 양적연구에서 사전검사는 2019년 2월부터 건강돌봄교사 최초 파견시 실시하였고, 사후검사는 참여자별로 해당 서비스(20회기)가 종료된 후에 하였다. 양적자료분석방법은 대응표본 t 검정을 실시하였다. 소아암 환아(N=34)의 사전 레질리언스의 평균은 96.79이며, 사후 레질리언스의 평균은 108.68이었다. 보호자(N=58)의 사전 양육스트레스의 평균은 43.90이며, 사후 양육스트레스의 평균은 42.14로 나타났다. 질적연구에 있어서는 소아암 환아 6명, 보호자 6명이 심층 인터뷰에 참여하였다. 질적연구결과에서는 양적연구결과에서 나타난 ‘소아암 환아의 레질리언스의 증가’와 ‘보호자의 양육스트레스 감소’가 동일하게 나타났고 이 밖에도 다차원적인 성과가 다음과 같이 나타났다. 첫째, 건강돌봄교사파견사업에 참여한 소아암 환아가 ‘투병생활에 활기를 주는 특별한 만남’을 갖게 되었으며, 개인 내적 특성 관련 성과로 긍정적 정서 향상 및 긍정적 자기이해가 나타났다. 소아암 환아의 대처 양상 특성 관련 성과로는 자립성 향상과 자원동원성 향상이 나타났다. 소아암 환아의 대인관계 특성 관련 성과로는 관계기술 및 사회성 향상이 나타났다. 둘째, 보호자의 자기돌봄 및 가족돌봄시간이 확보되었으며, 환아에 대한 양육환경이 개선되었고, 환아의 형제관계가 향상된 것으로 나타났다. 이러한 연구결과를 토대로 실천적 함의를 제언하였다. 본 혼합연구는 건강돌봄교사파견사업 수행이 갖는 개입의 효과성을 규명하고 사업의 방향성을 제시한 점에 연구의 의의가 있다. The purpose of the present study was to evaluate the effect of the health care teacher dispatch project for families with pediatric cancer patients and identify the outcomes of the project in order to present practical implications. The present study used mixed methodology. In the quantitative research, the prior inspection had been carried out when dispatching a health care teacher for the very first time from February 2019. Regarding the post-inspection, it had been done after the concerned service (20 sessions) by the participant ended. And, regarding the quantitative data analysis method, a correspondence sample t-test (a matched pair t-test) had been carried out. The average of the pre-resilience of the children with cancer (N=34) was 96.79. And the average of the post-resilience was 108.68. The average of the pre-rearing stress of the protectors (N=58) was 43.90. And the average of the post-rearing stress appeared as being 42.14. For the qualitative approach, 6 children and 6 parents participated in the interviews. As a result of the qualitative research, the ‘increase in resilience of children with cancer’ and ‘reduction in rearing stress of protectors’, which were identically observed even in those of the quantitative research, were found. In addition, the multidimensional outcomes were shown as follows. First, children with cancer who participated in the health care teacher dispatch project had a ‘special meeting that energizes their lives of struggling against illness, thereby showing positive emotional improvement and positive self-understanding as outcomes related to personal intrinsic characteristics. Moreover, there were improvements in self-reliance and resource mobilization as outcomes related to the coping-pattern characteristics of the children, and improvements in relationship skills and sociality as outcomes related to their interpersonal characteristics. Second, the self-care and family-care time of their protectors was secured. In addition, the nurturing environment for the children and their sibling relationship were improved. Based on the findings, this study suggested practical implications. Therefore, this mixed method study has significance in that it identifies the effectiveness of the health care teacher dispatch project and suggests the direction of the project.

희귀난치 환아 가족의 생활 실태와 지원을 위한 방안연구

이경준 ( Kyong Jun Lee ),임수정 ( Soo Jeong Lim ),김희수 ( Heesu Kim ),이보람 ( Boram Lee ) 한국정치사회연구소 2023 한국과 국제사회 Vol.7 No.6

본 연구는 희귀난치 질환 자녀를 둔 가족의 생활 실태와 지원 욕구를 파악하여 지원방안을 모색하는 데 목적이 있다. 이를 위해 2020년 기준 전국의 희귀난치 환아 가족 약 169천 명 중 할당표본추출(quota sampling)을 통해 모집된 총 263명을 대상으로 설문조사를 하였다. 그 결과, 희귀난치 환아 가족의 주양육자는 여성으로 자녀 돌봄 및 간병 비중이 높았고, 치료비지출로 인한 경제적인 부담이 매우 높았다. 전체 삶의 질 평균 및 삶의 질 하위요인 전반에서 보통 이하의 인식수준을 보였고, 교육 현장이나 과정에서 자녀의 질병에 대한 인식과 대처 관련 어려움이 큼을 확인하였다. 희귀난치 질환 및 자녀의 재학 상태에 따른 인식수준도 매우 낮은 수준이었다. 이런 실태에 근거하여 가족지원을 위한 다차원적인 지원방안을 제언하였다. The purpose of this study is to understand the living conditions and support needs of families with children with rare and incurable diseases and explore ways to provide support. To achieve this, a survey was conducted targeting a total of 263 families of children with rare and incurable diseases nationwide, based on quota sampling as of 2020. The results showed that the primary caregivers of children with rare and incurable diseases were predominantly women (84.0%), and they had a high burden of childcare and caregiving. The economic burden due to medical expenses was also very high. The overall quality of life and the sub-factors of quality of life were perceived to be average or below average, and it was found that there were significant difficulties in the awareness and coping related to the child's illness in educational settings or processes. The level of awareness varied greatly depending on the rare and incurable disease and the child's school attendance status, and it was generally very low. Based on these findings, multidimensional support measures for family support were suggested.

소아암 환아 어머니의 가족탄력성이 외상 후 성장에 미치는 영향: 삶의 의미와 적극적 스트레스 대처 이중매개효과

김미정,장진경 한국가족관계학회 2019 한국가족관계학회지 Vol.24 No.1

Objectives: This study was to investigate effects of family- resilience on post-traumatic growth(PTG) of a childhood cancer patient's mothers and to examine the double-mediating effects of the meaning of life and active stress coping strategy. Method: The self-report questionnaires were administered to 113 mothers of children with cancer. For data processing, SPSS 25.0 was utilized to estimate frequency, percentage, mean, standard deviation reliability coefficient(Cronbach's α), and t-test, in addition, one-way ANOVA, Pearson's correlation, Scheff's test, Hierarchical regression analysis, Bootstrap analysis were performed. Results: There were significant correlations among variables discussed above. Post-traumatic growth (PTG) had a significant correlation with family-resilience, the meaning of life and active stress coping strategy. It has been confirmed that family-resilience of childhood cancer patient's mothers affects post-traumatic growth(PTG) by double-mediating the meaning of life and active stress coping strategy. Conclusions: It suggests that family-resilience plays a significant role for mothers with childhood cancer to improve post-traumatic growth(PTG). The results of the study can be used as the basic data for development of the consultation and education program to help post-traumatic growth(PTG) of childhood cancer patient's mothers. This study also provides meaningful insights to improve post-traumatic growth of childhood cancer patient's mothers in medical institutions.

아동의 만성질환이 환아 및 환아 가족의 일상생활에 미치는 영향

한경자,박연환,Han, Kyung-Ja,Park, Yeun-Hwan 한국가정간호학회 2001 가정간호학회지 Vol.8 No.2

The aim of this descriptive study was to identify the impact of chronic illness on children and their families. Mothers of 177 children with chronic disease were recruited from aged one to 17 years hospitalizing the pediatric nursing unit at one university hospital. 28 questions. a self-complete maternal questionnaire developed by researchers based on literatures and 'The Impact of Childhood Illness Scale' (Hoare & Russell, 1995) assess four aspects of the child's and family's lifestyle with two dimensions for each question. the frequency of the problem and its importance of concern that it cause. In the data analysis. Pearson correlation coefficients and analysis of variance were used to test any association and a statistical comparisons. between individual variables and the impact on child's and family's lifestyle. The results were as follows: 1) There were the higher mean scores on the importance dimension than on the frequency dimension on total impact on child's and family's lifestyle. On the importance dimension. mothers had much higher levels of concern about impact on child's development and adjustment among subscales. On the frequency dimension, mothers had much higher levels of concern about impact on the family daily living on subscales. 2) The impact on child's and family's lifestyle related on individual variables were: (1) On the importance dimension. there was statistically significant low in the impact on child's development and adjustment among subscales in older parent group compared with it of younger parent group. (2) On the frequency dimension. there were statistically significant high in the impact on child's development and adjustment among subscales in the children with leukemia or cancer compared with it of the other children who had another chronic illnesses. And there were statistically significant high in the impact on child's development and adjustment among subscales in less than high school educated mothers compared with it of mothers who was educated college level. (3) On the frequency dimension. There were statistically significant high in the impact on family's daily living among subscales and total impact on child's and family's lifestyle in female children. (4) There was positive correlation between impact on parents daily living and frequency of child's hospitalization on the frequency dimension. but there was negative correlation between the two variables on the importance dimension. (5) There was positive correlation between impact of chronic illness and its treatment and duration of child's hospitalization on the frequency dimension. In conclusion. these results were reflected by the high level of concerns about impact on child's development and adjustment although mothers had frequently responded about the impact on the family daily living. We suggest consistent intervening program that help the family empowering to make children live with and adjust to their chronic illnesses from the point of diagnosis and after discharge from the hospital. We also suggest these results can be utilized as a useful data in the practice of home health nursing for children who have chronic illnesses and their families.

입원 환아 가족의 대처

탁영란,여지영,박영의,Tak Young Ran,Yo Ji Young,Park Young Yee 한국아동간호학회 2000 Child Health Nursing Research Vol.6 No.2

Nurses working with families who has a hospitalized child are aware of the complexity of the tasks and stresses they deal with new setting of environment. The challenge is to assess the family coping activity that require the most immediate intervention for the effective nursing care for child and family. This study describe the family coping inventory for the clinical guidance to identify a family coping with stressors. The purpose of this study was to look at the factors related to the family's coping activity when the child was hospitalized. The data were collected with a questionnaire between July and August, 1999, in a sample of 106 families who have hospitalized child. Family coping was assessed using Family Crisis Oriented Personal Evaluation Scale(F-COPES). Data was analyzed using correlation coefficient and analysis of variance. Positive correlation was found between social support, reframe with mobilizing the family to acquire and accept help in sub-domain of family coping. Strongest correlation existed between the family's spiritual support and total family coping. The type of diagnosis, the level of family income, religion, and child's age were significantly different in family coping. The result show that the family coping is affected by the characteristics of child and family, as well as the factors of coping activity. Therefore, early assessment of family coping skill and activity is important to the prevention of problem with function toward wholeness as a unit and child's well being. It can be used with a broad range of child's hospitalization process. It also serve as a nursing record and planning tool for documenting issues that may become priorities for future interventions.

소아암 환아 가족의 적응에 영향을 미치는 회복력요인

심미경 한국아동간호학회 2004 Child Health Nursing Research Vol.10 No.4

Purpose: This study was conducted to identify resiliency factor, to test causal relationship and effect of resiliency factors on adaptation in families of children with cancer. A conceptual framework was constructed based on McCubbin's resiliency model. Hypotheses were tested with empirical data. Method: Data were collected using self-report questionnaire from 232 families of children with cancer. The collected data were analyzed using the SAS program and LISREL program for covariance structural analysis. Result: Family hardiness and problem-solving coping had significant direct effects on adaptation in families of children with cancer. Social support had significant indirect and total effect on adaptation. Family Schema had significant direct effect on family hardiness and problem-solving coping. Problem-solving communication had a significant direct effect on family hardiness and an indirect effect on family functioning and problem-solving coping. Among the resiliency factors, family hardiness had the greatest effect on adaptation in family of children with cancer. Conclusion: The findings suggest that nursing interventions to enhance family hardiness, problem-solving coping and social support would result in an increase in adaptation in families of children with cancer. An integrated intervention that emphasizes and promotes resiliency factors should be developed and established for families of children with cancer.

응급실을 통해 입원한 환아와 외래를 통해 입원한 환아의 가족기능 평가

정종승,박은영,차영부,정영순,서종호 대한가정의학회 1995 Korean Journal of Family Medicine Vol.16 No.10

만성환아의 가족에 관한 국내 연구논문 분석

정연,이군자,백승남,조결자,Jung Yun,Lee Kun Ja,Paik Seung Nam,Cho Kyoul Ja 한국아동간호학회 1996 Child Health Nursing Research Vol.2 No.1

The purpose of study was : 1) to analyze the trend of research on the family with chronically ill children in Korea, 2) to suggest direction for future study on the family with chronically ill children, and contributing to the use of intervention in family nursing practice. Research studies on the family with chronically ill children were selected from the Korean Nusre, the Korean Nurses' Academic Society Journal, and from dissertations, which were conducted between 1975 and 1995. The total numbers of the studies were 35. These studies were analyzed for 1)time of publication or presentation, 2)research design, 3)characteristics of subjects, 4) type of chronic disease, 5)main concepts, 6)measurement tool, 7) the sis for a degree or nondegree, 8) result of correlational studies. The findings of the analysis were as follows : 1) The numbers of studies on the family with chronically ill children have increas rapidly the early 1990's. In research design, the numbers of survey research studies were the highest. Especially, the most frequently research design was the correlational survey. There were 19 correlational studies(25.7%) during the early 1990's. 2) The subjects in 16 studies(45.7%) were mother of chronically ill children and, in 8 studies (22.9% ) were their parents. 3) In most types of chronic diseases, there were 14 hematooncologic disease(32.6%) and 14 hadicapped children (32.6% ). 4) Frequently used research concepts were stress, degree of coping or way of coping, social support, parents' support, family functioning, intensity of family and family adaptation. 5) Acceding to the results of correlational studies, the more family stress was higher the more degree of coping, family functioning, intensity of family and degree of family adaption was lower. The more degree of social support was higher the more stress was lower and degree of coping, family functioning and intensity of family was higher. The more family functioning was higher the more intensity of family and family adaptation was higher. 6) 24 researches on the family with chronically ill children were done for a thesis for a degree and 11 were nondegree research studies. The following suggestions are made based on the above findings : 1) The pattern of these studies related to the family with chronically ill children in domain of Nursing need to be compared with trend in other domains. 2) More replicated research on the family with chronically ill children is needed to develop family nursing intervention and prove the effect of that and more qualitative research on the family with chronically ill children is needed to comprehensive indepth the family with chronically ill children. 3) Further research on the family with chronically ill children is needed to verify subjects and type of chronic disease, develop applicable measurement tools in Korea and identify relation between other concepts. 4) Family nursing researchers should make an effort to apply research result in various clinical settings and community settings, and try to carry out not only team research with clinical nurse but also other multidisciplinary researcher related to the family.