서브메뉴
검색
Thinking Ahead: End of Life Care Preferences for Adults With an Intellectual Disability
Thinking Ahead: End of Life Care Preferences for Adults With an Intellectual Disability
상세정보
- 자료유형
- 학위논문 서양
- 최종처리일시
- 20260202105139
- ISBN
- 9798291588437
- DDC
- 361
- 저자명
- Knoke, Victoria.
- 서명/저자
- Thinking Ahead: End of Life Care Preferences for Adults With an Intellectual Disability
- 발행사항
- [Sl] : The University of Wisconsin - Madison, 2025
- 발행사항
- Ann Arbor : ProQuest Dissertations & Theses, 2025
- 형태사항
- 152 p
- 주기사항
- Source: Dissertations Abstracts International, Volume: 87-03, Section: B.
- 주기사항
- Advisor: Schroepfer, Tracy A.
- 학위논문주기
- Thesis (Ph.D.)--The University of Wisconsin - Madison, 2025.
- 초록/해제
- 요약Adults with intellectual disabilities (ID) are living longer, yet their voices remain largely absent from conversations about end-of-life (EOL) care. This dissertation explores how adults with ID understand death, express preferences for EOL care, and how their life experiences shape those views. It also evaluates the effectiveness of accessible research methods in eliciting meaningful responses from this population.The study involved semi-structured interviews with 16 adults with ID and 8 key support persons across supported living settings. Participants demonstrated a range of understanding about death, from concrete to abstract, and expressed clear preferences regarding physical comfort, emotional support, location of care, and communication about terminal illness. Personal experiences with loss, illness, and religious beliefs were found to significantly influence these preferences.Accessible methods-including simplified language, visual aids, and relational interviewing-proved effective in facilitating engagement, even among individuals with limited verbal communication or conceptual understanding. Support persons played a critical role in interpreting and amplifying participants' voices, though their influence also raised ethical considerations around autonomy and consent.Findings highlight the need for inclusive EOL planning that respects the agency of adults with ID. Social workers and care providers must be equipped to initiate sensitive conversations, honor expressed wishes, and advocate for systems that support dignity and choice at the end of life. This research contributes to a growing movement toward equitable, person-centered care and underscores the importance of listening to those who have historically been silenced in matters of death and dying.
- 일반주제명
- Social work
- 일반주제명
- Disability studies
- 일반주제명
- Aging
- 일반주제명
- Communication
- 키워드
- End-of-life
- 기타저자
- The University of Wisconsin - Madison Social Welfare
- 기본자료저록
- Dissertations Abstracts International. 87-03B.
- 전자적 위치 및 접속
- 로그인 후 원문을 볼 수 있습니다.
MARC
008260126s2025 us c eng d■001000017359570
■00520260202105139
■006m o d
■007cr#unu||||||||
■020 ▼a9798291588437
■035 ▼a(MiAaPQ)AAI32240486
■040 ▼aMiAaPQ▼cMiAaPQ
■0820 ▼a361
■1001 ▼aKnoke, Victoria.
■24510▼aThinking Ahead: End of Life Care Preferences for Adults With an Intellectual Disability
■260 ▼a[Sl]▼bThe University of Wisconsin - Madison▼c2025
■260 1▼aAnn Arbor▼bProQuest Dissertations & Theses▼c2025
■300 ▼a152 p
■500 ▼aSource: Dissertations Abstracts International, Volume: 87-03, Section: B.
■500 ▼aAdvisor: Schroepfer, Tracy A.
■5021 ▼aThesis (Ph.D.)--The University of Wisconsin - Madison, 2025.
■520 ▼aAdults with intellectual disabilities (ID) are living longer, yet their voices remain largely absent from conversations about end-of-life (EOL) care. This dissertation explores how adults with ID understand death, express preferences for EOL care, and how their life experiences shape those views. It also evaluates the effectiveness of accessible research methods in eliciting meaningful responses from this population.The study involved semi-structured interviews with 16 adults with ID and 8 key support persons across supported living settings. Participants demonstrated a range of understanding about death, from concrete to abstract, and expressed clear preferences regarding physical comfort, emotional support, location of care, and communication about terminal illness. Personal experiences with loss, illness, and religious beliefs were found to significantly influence these preferences.Accessible methods-including simplified language, visual aids, and relational interviewing-proved effective in facilitating engagement, even among individuals with limited verbal communication or conceptual understanding. Support persons played a critical role in interpreting and amplifying participants' voices, though their influence also raised ethical considerations around autonomy and consent.Findings highlight the need for inclusive EOL planning that respects the agency of adults with ID. Social workers and care providers must be equipped to initiate sensitive conversations, honor expressed wishes, and advocate for systems that support dignity and choice at the end of life. This research contributes to a growing movement toward equitable, person-centered care and underscores the importance of listening to those who have historically been silenced in matters of death and dying.
■590 ▼aSchool code: 0262.
■650 4▼aSocial work
■650 4▼aDisability studies
■650 4▼aAging
■650 4▼aCommunication
■653 ▼aAccessible methods
■653 ▼aDevelopmental disability
■653 ▼aEnd-of-life
■653 ▼aIntellectual disabilities
■653 ▼aLife Course Theory
■690 ▼a0452
■690 ▼a0201
■690 ▼a0493
■690 ▼a0459
■71020▼aThe University of Wisconsin - Madison▼bSocial Welfare.
■7730 ▼tDissertations Abstracts International▼g87-03B.
■790 ▼a0262
■791 ▼aPh.D.
■792 ▼a2025
■793 ▼aEnglish
■85640▼uhttp://www.riss.kr/pdu/ddodLink.do?id=T17359570▼nKERIS▼z이 자료의 원문은 한국교육학술정보원에서 제공합니다.
