간질(뇌전증)장애인의 사회참여경험 = Social participation experience of people with epilepsy disability

다국어 초록 (Multilingual Abstract)

Participation means the level of engagement in the boundary of life environment. Briefly, a person's social participation is based on the results from the interaction between the person's ability and environmental factors. However, epilepsy- disabled persons have many struggling factors in life environment, being different from others due to their handicap.
The study aims to understand epilepsy-disabled persons' experience of participating in society through exploring the process of essential meaning within the social participation that epilepsy-disabled person’s experience.
The 12 participants in the study are those with epilepsy disability level three or four who can possibly communicate and are able enough to express their social participation experience.
The study is based on the Giorgi descriptive phenomenological method which actively describes the social participation experience in the perspective of epilepsy-disabled persons.
The following is the summarized results:
First, it is to describe corroborative details based on epilepsy-disabled persons' social participation experience. As a result, the following was shown: the building element of <fear in dialogue> as 'being embarrassed in communicating with a stranger' and 'not being easy to remember talks and behaviors'; the building element of <uneasy with driving> as 'drive more carefully' and 'driving requires social restriction'; the building element of <not showing epilepsy disability> as 'want to hide spasm', ‘the feeling like a burden from others' response after a spasm' and 'not differentiating both appearances of normal persons and disabled persons'; the building element of <a spasm is the largest obstacle> as 'a spasm is unbearably bad looking', 'social participation is not prior' and 'try to properly respond for reasonable recognition and reaction'; the building element of <marriage is difficult> as ‘stay away from marriage' and 'worrying about heredity is not serious'; the building element of <family relationship is not satisfactory> as 'families show both emotions of good and bad' and 'depending on family'; the building element of <employment is difficult> as 'epilepsy is an obstacle to employment', 'the mind and the body don't go together', 'being indrawn' and 'being alienated at work'; the building element of <prefer to accompany non-disabled persons> as 'distance toward epileptic persons should be removed', 'would like to live a normal life' and 'change of perception toward epilepsy is needed.'
Second, the time-based situational meaning structure of epilepsy-disabled persons' social participation experience proved the following steps: outbreak, adaptation of disability, social participation, and self-reliance.
Third, the significance of epilepsy-disabled persons' social participation experience lies within the co-existence of them appearing as a non-disabled person lacking external spasms being equal to a person not suffering from epilepsy at all.
Lastly, the study thoroughly speculated and classified the essential meaning of social participation based on various experiences. The participants mainly used public transportation and intentionally avoided driving by themselves. Also, in regards to self administration, the highest priority was given to stopping the most distinct feature of spasms. Both positive and negative feelings existed between the participants and their family members, particularly showing negative opinions toward marriage. In relationships with others and mutual interaction, participants were petrified by the thought of building new relationships with others. In the job-related major life boundary, once employers were aware that participants were epileptic, employment became almost impossible and participants were forced to resign. In social community life, participants wanted to accompany non-disabled persons as well as to receive affectionate words and companionship from warm-hearted non-disabled individuals.
In conclusion, since epilepsy-disabled persons have the appearance of a non-disabled person but live in world of epilepsy, they often face chaotic circumstances. For example, like the Mobius Strip, with a surface with only one side and only one boundary component, non-orientable, yet co-existing. Just the same, epileptic persons also try to co-exist by accompanying non-disabled persons and participating in society.

keywards : epilepsy-disabled person, social participation,
Giorgi phenomenological, Mobius Strip

목차 (Table of Contents)

• ABSTRACT ⅲ
• 제 1장 서론 1
• 제1절 문제제기 1
• 제2절 연구의 목적과 연구문제 7
• 제3절 연구의 의의 8
• 제 2장 이론적 배경 9
• 제 1절 간질장애인 9
• 1. 간질장애의 개념 9
• 2. 간질장애의 원인 및 특성 10
• 1) 간질장애의 원인 10
• 2) 간질장애의 특성 11
• 제 2절 장애인의 사회참여 14
• 1. 사회참여 개념 14
• 2. 간질장애인의 사회참여 16
• 1) 간질장애로 인한 어려움 16
• 2) 간질장애인의 사회적 능력 18
• 3) 간질장애인 고용 19
• 4) 간질장애인의 사회환경 21
• 제 3장 연구방법 24
• 제 1절 현상학적 연구방법 24
• 1. 현상학 연구 24
• 2. Giorgi 현상학 25
• 제 2절 연구과정 26
• 1. Giorgi연구방법의 진행단계 26
• 2. 연구자의 준비 28
• 제 3절 연구참여자 28
• 제 4절 자료수집 30
• 제 5절 연구자의 선이해 31
• 제 6절 연구의 엄격성 32
• 제 4장 연구결과 34
• 제 1절 상황적 의미구조 35
• 제 2절 본질구조 62
• 1. 본질과 구성요소 62
• 2. 경험의 본질 및 구성요소 65
• 제 3절 일반적 구조적 진술 116
• 1. 일반적 의미구조 116
• 2. 간질장애인의 사회참여 경험 의미 : 뫼비우스의 띠 121
• 제 5장 결 론 125
• 제 1절 연구결과 요약 125
• 제 2절 논의 128
• 제 3절 연구의 함의 및 제언 134
• 1. 이론적 함의 134
• 2. 실천적 함의 135
• 3. 정책적 함의 136
• 4. 후속 연구를 위한 제언 137
• 참고문헌 139
• [부 록] 148