Journal of applied research in intellectual disabilities : JARID最新文献_第6页

Intellectual Disabilities and Decision Making at End of Life: A Literature Review. 智障与临终决策:文献综述。

Journal of applied research in intellectual disabilities : JARID Pub Date : 2017-11-01 Epub Date: 2016-07-25 DOI: 10.1111/jar.12270

Abbie Kirkendall, Kristen Linton, Saritha Farris

{"title":"Intellectual Disabilities and Decision Making at End of Life: A Literature Review.","authors":"Abbie Kirkendall, Kristen Linton, Saritha Farris","doi":"10.1111/jar.12270","DOIUrl":"https://doi.org/10.1111/jar.12270","url":null,"abstract":"Background: Individuals with an intellectual disability are vulnerable to having end-of-life decisions made for them merely due to the presence of a disability. As a result, decisions made by others may not reflect the exact wishes of the individual.Methods: This review examines literature on individuals with an intellectual disability in making end-of-life decisions from the years 2000 to 2014. A total of 38 articles were found with 12 articles having a direct focus on end-of-life decision making.Results: The emerging themes include the following: (i) assumption of lack of capacity, (ii) inconsistency in evaluating capacity and communication challenges and (iii) third party decisions.Conclusions: Earlier discussions about end-of-life planning before the diagnosis of a life-limiting illness would be beneficial. Lacking is a consistent approach to determining capacity for individuals with an intellectual disability. The findings from this review provide a foundation for a decision tree in end-of-life decision making for individuals with an intellectual disability.","PeriodicalId":73610,"journal":{"name":"Journal of applied research in intellectual disabilities : JARID","volume":"30 6","pages":"982-994"},"PeriodicalIF":0.0,"publicationDate":"2017-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1111/jar.12270","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"34701838","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

引用次数: 41

The experiences of staff who support people with intellectual disability on issues about death, dying and bereavement: A metasynthesis. 在死亡、临终和丧亲之痛等问题上为智障人士提供支持的工作人员的经验:综合分析。

Journal of applied research in intellectual disabilities : JARID Pub Date : 2017-11-01 Epub Date: 2017-07-12 DOI: 10.1111/jar.12376

Ailsa J Lord, Stephen Field, Ian C Smith

{"title":"The experiences of staff who support people with intellectual disability on issues about death, dying and bereavement: A metasynthesis.","authors":"Ailsa J Lord, Stephen Field, Ian C Smith","doi":"10.1111/jar.12376","DOIUrl":"https://doi.org/10.1111/jar.12376","url":null,"abstract":"Background: Historically, people with intellectual disabilities have tended to be excluded from knowing about death, dying and bereavement. Staff in intellectual disability services can play a valuable role in improving understanding of these issues in those they support. This qualitative metasynthesis aimed to understand the experiences of staff supporting adults with intellectual disabilities with issues of death, dying and bereavement.Method: Thirteen papers were identified following a systematic review of six databases.Results: Three themes were developed following a lines-of-argument synthesis: (i) talking about death is hard: negotiating the uncertainty in death, dying and bereavement; (ii) the commitment to promoting a \"good death\"; and (iii) the grief behind the professional mask. \"A cautious silence: The taboo of death\" was an overarching theme.Conclusions: A more open culture around issues of death, dying and bereavement in intellectual disability settings is essential and could be promoted through staff training and support.","PeriodicalId":73610,"journal":{"name":"Journal of applied research in intellectual disabilities : JARID","volume":"30 6","pages":"1007-1021"},"PeriodicalIF":0.0,"publicationDate":"2017-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1111/jar.12376","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"35164219","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

引用次数: 22

Supporting end of life decision making: Case studies of relational closeness in supported decision making for people with severe or profound intellectual disability. 支持生命终结决策:关系亲密对严重或深度智力残疾人士支持决策的案例研究。

Journal of applied research in intellectual disabilities : JARID Pub Date : 2017-11-01 Epub Date: 2017-08-16 DOI: 10.1111/jar.12393

Joanne Watson, Erin Wilson, Nick Hagiliassis

{"title":"Supporting end of life decision making: Case studies of relational closeness in supported decision making for people with severe or profound intellectual disability.","authors":"Joanne Watson, Erin Wilson, Nick Hagiliassis","doi":"10.1111/jar.12393","DOIUrl":"https://doi.org/10.1111/jar.12393","url":null,"abstract":"Background: The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) promotes the use of supported decision making in lieu of substitute decision making. To date, there has been a lack of focus on supported decision making for people with severe or profound intellectual disability, including for end of life decisions.Methods: Five people with severe or profound intellectual disability's experiences of supported decision making were examined. This article is particularly focused on one participant's experiences at the end of his life.Results: All five case studies identified that supporters were most effective in providing decision-making support for participants when they were relationally close to the person and had knowledge of the person's life story, particularly in relation to events that demonstrated preference.Conclusions: Findings from this study provide new understandings of supported decision making for people with severe or profound intellectual disability and have particular relevance for supporting decision making at the end of life.","PeriodicalId":73610,"journal":{"name":"Journal of applied research in intellectual disabilities : JARID","volume":"30 6","pages":"1022-1034"},"PeriodicalIF":0.0,"publicationDate":"2017-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1111/jar.12393","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"35328184","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

引用次数: 37

Making Sense of Bereavement in People with Profound Intellectual and Multiple Disabilities: Carer Perspectives. 深刻的智力和多重残疾人士的丧亲之痛:照顾者的观点。

Journal of applied research in intellectual disabilities : JARID Pub Date : 2017-11-01 Epub Date: 2016-08-24 DOI: 10.1111/jar.12285

Hannah Young, James Hogg, Brenda Garrard

引用次数: 8

Emergency medical services providers' perspective of end-of-life decision making for people with intellectual disabilities. 紧急医疗服务提供者对智障人士临终决策的看法。

Journal of applied research in intellectual disabilities : JARID Pub Date : 2017-11-01 Epub Date: 2017-05-24 DOI: 10.1111/jar.12363

Jacqueline McGinley, Deborah P Waldrop, Brian Clemency

{"title":"Emergency medical services providers' perspective of end-of-life decision making for people with intellectual disabilities.","authors":"Jacqueline McGinley, Deborah P Waldrop, Brian Clemency","doi":"10.1111/jar.12363","DOIUrl":"https://doi.org/10.1111/jar.12363","url":null,"abstract":"Background: Emergency medical services (EMS) providers are often called to rapidly determine and act upon patients' wishes for end-of-life care. People with intellectual disabilities are living increasingly longer with complex conditions leading to international calls for person-centred advance care planning. Yet, best estimates suggest that very few people with intellectual disabilities document their wishes.Methods: This exploratory-descriptive study incorporated mixed methods to analyse data collected consecutively (surveys, n = 239; interviews, n = 48) with EMS providers from five agencies. Data were subjected to a sequential quantitative-qualitative analysis applying a critical discourse analysis framework.Results: Findings indicate that 62.7% had treated a person with intellectual disability who had medical orders directing end-of-life care. Three themes (provider familiarity, organizational processes, sociocultural context) offer insights about how medical orders inform EMS providers during calls involving people with intellectual disabilities.Conclusion: Multiple contexts influence how wishes are documented and care provided to people with intellectual disabilities near life's end.","PeriodicalId":73610,"journal":{"name":"Journal of applied research in intellectual disabilities : JARID","volume":"30 6","pages":"1057-1064"},"PeriodicalIF":0.0,"publicationDate":"2017-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1111/jar.12363","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"35026923","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

引用次数: 12

An exploration of clinical psychology's response to parental bereavement in adults with intellectual disability. 成人智障患者父母丧亲的临床心理学反应探讨。

Journal of applied research in intellectual disabilities : JARID Pub Date : 2017-11-01 Epub Date: 2017-07-03 DOI: 10.1111/jar.12380

Lynn Irwin, Grace O'Malley, Shazia Neelofur, Suzanne Guerin

{"title":"An exploration of clinical psychology's response to parental bereavement in adults with intellectual disability.","authors":"Lynn Irwin, Grace O'Malley, Shazia Neelofur, Suzanne Guerin","doi":"10.1111/jar.12380","DOIUrl":"https://doi.org/10.1111/jar.12380","url":null,"abstract":"Background: The dearth of literature regarding how or when to intervene when an adult with intellectual disability is bereaved may impede clinical practice; this study therefore aimed to explore the current clinical psychology response, so as to enhance understanding of the role of the profession in supporting grief within this population.Method: A collective case study design was used. Data for six persons with intellectual disability, including interviews with parentally bereaved persons and involved staff members, were integrated into individual case stories for cross-case synthesis.Results: Data were analysed using thematic analysis. Five overarching themes illustrated that the clinical psychology role is broadly distributed and identified potentially complicating factors such as \"gatekeeping\" and \"staff uncertainty.\"Conclusions: A model of bereavement supports reflecting that by Read (Learning Disability Practice, 8, 2005, 31) is being approximated in clinical practice; further research is required to determine how best to implement this, and whether this meets the true needs of the population.","PeriodicalId":73610,"journal":{"name":"Journal of applied research in intellectual disabilities : JARID","volume":"30 6","pages":"1065-1075"},"PeriodicalIF":0.0,"publicationDate":"2017-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1111/jar.12380","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"35136757","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

引用次数: 6

Direct care workers' experiences of grief and needs for support. 直接护理人员的悲伤经历和支持需求。

Journal of applied research in intellectual disabilities : JARID Pub Date : 2017-11-01 Epub Date: 2017-03-01 DOI: 10.1111/jar.12339

Jennifer A Gray, Jinsook Kim

{"title":"Direct care workers' experiences of grief and needs for support.","authors":"Jennifer A Gray, Jinsook Kim","doi":"10.1111/jar.12339","DOIUrl":"https://doi.org/10.1111/jar.12339","url":null,"abstract":"Background: A paucity of information is available on direct care workers' (DCWs') experiences with loss when their clients (people with intellectual and developmental disabilities [I/DD]) die. This study explored DCWs' grief experiences, their coping methods and their needs for support.Methods: A thematic analysis approach was used to examine data from nine focus groups with 60 DCWs from five community-based organizations that provide services to people with I/DD.Results: Three themes (factors affecting DCW loss, ways that DCWs cope with loss and organizational issues affecting the bereavement experience) and associated subthemes emerged from the data. This highlighted not only DCW professional grief experiences but how organizational communication and policy affected their grief experience.Conclusions: DCWs experience grief in the workplace but may receive insufficient organizational bereavement supports. Recommendations are made for organizational policies and resources to improve organizational communication and assist DCWs in coping with their grief.","PeriodicalId":73610,"journal":{"name":"Journal of applied research in intellectual disabilities : JARID","volume":"30 6","pages":"995-1006"},"PeriodicalIF":0.0,"publicationDate":"2017-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1111/jar.12339","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"34772780","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

引用次数: 9

"I'm still here": Exploring what matters to people with intellectual disability during advance care planning. “我还在这里”:探索在预先护理计划中对智障人士来说什么是重要的。

Journal of applied research in intellectual disabilities : JARID Pub Date : 2017-11-01 Epub Date: 2017-04-04 DOI: 10.1111/jar.12355

Nicola McKenzie, Brigit Mirfin-Veitch, Jennifer Conder, Sharon Brandford

{"title":"\"I'm still here\": Exploring what matters to people with intellectual disability during advance care planning.","authors":"Nicola McKenzie, Brigit Mirfin-Veitch, Jennifer Conder, Sharon Brandford","doi":"10.1111/jar.12355","DOIUrl":"https://doi.org/10.1111/jar.12355","url":null,"abstract":"Background: This study sought to identify, from the perspective of people with intellectual disabilities and life limiting conditions, the factors that strengthened and inhibited their Advance Care Planning.Methods: This in depth qualitative study explored the experiences of four people with intellectual disability and life limiting conditions, through interviews and documentation reviews.Results: There was strong agreement across all participants about what positively influenced Advance Care Planning, namely; going at my pace; supporting me to make my own choices; adapting the process to suit me, and, most importantly; continuing to support and plan the life I'm still living. With the exception of being comfortable/skilled in end-of-life support, the skills required of facilitators were similar to those required for all forms of person-centred planning.Conclusion: The findings are encouraging and demonstrate that Advance Care Planning is a useful tool in ensuring that people with intellectual disability have control and choice over their lives, right to the end.","PeriodicalId":73610,"journal":{"name":"Journal of applied research in intellectual disabilities : JARID","volume":"30 6","pages":"1089-1098"},"PeriodicalIF":0.0,"publicationDate":"2017-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1111/jar.12355","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"34887704","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

引用次数: 26

End of life and people with intellectual disability. 生命终结和智障人士。

Journal of applied research in intellectual disabilities : JARID Pub Date : 2017-11-01 Epub Date: 2017-07-31 DOI: 10.1111/jar.12383

Roger J Stancliffe, Michele Y Wiese, Sue Read

引用次数: 5

Agency, social and healthcare supports for adults with intellectual disability at the end of life in out-of-home, non-institutional community residences in Western nations: A literature review. 机构、社会和医疗保健支持在西方国家的智力残疾成人在家庭外，非机构社区住宅生命结束:文献综述。

Journal of applied research in intellectual disabilities : JARID Pub Date : 2017-11-01 Epub Date: 2017-06-06 DOI: 10.1111/jar.12374

Teresa T Moro, Teresa A Savage, Sarah Gehlert

{"title":"Agency, social and healthcare supports for adults with intellectual disability at the end of life in out-of-home, non-institutional community residences in Western nations: A literature review.","authors":"Teresa T Moro, Teresa A Savage, Sarah Gehlert","doi":"10.1111/jar.12374","DOIUrl":"https://doi.org/10.1111/jar.12374","url":null,"abstract":"Background: The nature and quality of end-of-life care received by adults with intellectual disabilities in out-of-home, non-institutional community agency residences in Western nations is not well understood.Method: A range of databases and search engines were used to locate conceptual, clinical and research articles from relevant peer-reviewed journals.Results: The present authors present a literature review of the agency, social and healthcare supports that impact end-of-life care for adults with intellectual disabilities. More information is needed about where people with intellectual disabilities are living at the very end of life and where they die.Conclusions: The support needs for adults with intellectual disabilities will change over time, particularly at the end of life. There are some areas, such as removing barriers to providing services, staff training, partnerships between agencies and palliative care providers, and advocacy, where further research may help to improve the end-of-life care for adults with intellectual disabilities.","PeriodicalId":73610,"journal":{"name":"Journal of applied research in intellectual disabilities : JARID","volume":"30 6","pages":"1045-1056"},"PeriodicalIF":0.0,"publicationDate":"2017-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1111/jar.12374","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"35063779","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

引用次数: 12