Do men and women with intellectual disabilities understand death?

Chow, Amy Y. M.; McEvoy, John; Chan, Iris; Borschel, Monica; Yuen, Jenay; Lo, Jane C.

doi:10.1111/jir.12431

Cited by 10 publications

(8 citation statements)

References 28 publications

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“…Nine studies (53%) (Cithambaram et al, 2019, 2020; Cithambarm et al, 2021; Forrester‐Jones, 2013; Haider & Zaman, 2022; McEvoy et al, 2012; McEvoy et al, 2017; Thorp et al, 2018; Tuffrey‐Wijne et al, 2013) collected data from people with mild to moderate disabilities and all used interviews. Five studies (29%) (Chow et al, 2017; Rodríguez Herrero et al, 2015; Tuffrey‐Wijne et al, 2009; Tuffrey‐Wijne, Bernal, & Hollins, 2010; Tuffrey‐Wijne, Bernal, Hubert, et al, 2010) collected data from people with mild, moderate, and severe intellectual disabilities. One study (6%) (Young & Garrard, 2016) identified their participant as having profound intellectual disabilities.…”

Section: Resultsmentioning

confidence: 99%

“…Some participants could not relate to the topic of care at end-of-life due to their lack of experience with it and its intangibility (Cithambaram et al, 2019). Chow et al (2017) note that in translating the tools from English used in McEvoy et al (2012) there may be translation errors. Some combined interviews with other methods of data collection.…”

Section: Individual Interviewsmentioning

confidence: 99%

See 1 more Smart Citation

Qualitative methodological approaches involving participants with intellectual disabilities: Scoping review of literature exploring death and dying

Diaz

Bickenbach

Sabariego

et al. 2023

Research Intellect Disabil

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BackgroundA paucity of qualitative research on sensitive topics that focuses on participants with intellectual disabilities leaves their views unexplored. This scoping review mainly aimed to provide an overview of qualitative data collection methods used in research involving participants with intellectual disabilities to explore death and dying.MethodA scoping review of primary research and methodological papers published between January 2008 and March 2022 was conducted. The PRISMA‐ScR checklist was followed.ResultsWe identified 25 articles utilising four data collection methods: interviews, focus groups, the Nominal Group Technique, and participant observation. Data collection trends were identified, including accommodations for participants with intellectual disabilities, visual media used as a facilitator, and reporting of distress protocols. Most participants had mild to moderate intellectual disabilities.ConclusionsThe included studies demonstrate a flexible approach that relies on the use of multiple methods. Future research must adequately report study characteristics to ensure transparency and reliability.

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Section: Resultsmentioning

confidence: 99%

Section: Individual Interviewsmentioning

confidence: 99%

Qualitative methodological approaches involving participants with intellectual disabilities: Scoping review of literature exploring death and dying

Diaz

Bickenbach

Sabariego

et al. 2023

Research Intellect Disabil

View full text Add to dashboard Cite

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“…Children diagnosed with intellectual disability (ID) have shown confusion and difficulty understanding the concepts of non-functionality, irreversibility (associating death with the illness) and universality [37]. Finally, recent studies in adults diagnosed with ID show that they do acquire the components of the death concept, but in a different and, in many cases, partial way [38,39], showing greater difficulty understanding concepts such as causality and universality [40]. Future studies that use the EsCoMu scale may explore the concept of death in these populations, as well as the effectiveness of interventions related to death education and supporting methods for bereavement and end-of-life processes in this population [41].…”

Section: Discussionmentioning

confidence: 99%

A New Instrument to Assess Children’s Understanding of Death: Psychometrical Properties of the EsCoMu Scale in a Sample of Spanish Children

et al. 2021

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The acquisition of the death concept in children may influence how these children cope with the losses that they will confront throughout their lives. At the present time, there is a lack of psychometric instruments in Spanish-speaking countries in order to evaluate the components of the death concept in children. The aim of this study was to create and validate a scale (EsCoMu-Escala sobre el Concepto de Muerte) in order to provide insight about the concept of death in children. The sample was formed by 358 children from ages 6 to 13 years. The final EsCoMu version has 27 items which serve to evaluate universality, irreversibility, non-functionality and causality. The results of the confirmatory factor analysis show an adequate fit index for the four dimensions model, reliability (α = 83) and validity evidence, specifically based on the children’s age. In conclusion, EsCoMu is an instrument that shows adequate reliability and validity indices in order to assess the concept of death and its four components among children. Due to its simplicity, this instrument can be very useful if applied to the field of neurodevelopmental disorders.

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“…The Concept of Death Questionnaire tool has been used in several other studies, including a study designed to replicate the work of McEvoy et al (2012) with 110 Chinese adults with ID (Chow et al, 2017). In addition, Stancliffe et al (2017) completed the first independent psychometric evaluation of the tool with 11 adults with ID and two disability staff in Australia.…”

Section: Concept Of Death Questionnairementioning

confidence: 99%

Understanding the Concepts of Death in Bereaved Teens with Intellectual Disabilities: An Examination of Measurement Tools

Gaines¹

2023

Illness, Crisis & Loss

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Teens with intellectual disabilities experience disenfranchised grief, as they are often excluded from death education and rituals. Such exclusion can impact opportunities to understand the concepts of death and process the loss. This paper examines the psychometric properties of the limited existing tools designed to measure the understanding of concepts of death in parentally bereaved teens with intellectual disabilities (ID) who are included in after-death rituals as compared to those not included. A literature search uncovered no tools for the concept of death understanding for teens with ID, but four related tools were examined due to their potential proximal applicability. Though further development would be needed, the EsCoMu Scale and the Concept of Death Questionnaire showed the most potential use for this population. Further research is needed to develop a tool specific to teens with ID that takes into account the developmental, cognitive, and social aspects of their grieving experiences.

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Do men and women with intellectual disabilities understand death?

Cited by 10 publications

References 28 publications

Qualitative methodological approaches involving participants with intellectual disabilities: Scoping review of literature exploring death and dying

Qualitative methodological approaches involving participants with intellectual disabilities: Scoping review of literature exploring death and dying

A New Instrument to Assess Children’s Understanding of Death: Psychometrical Properties of the EsCoMu Scale in a Sample of Spanish Children

Understanding the Concepts of Death in Bereaved Teens with Intellectual Disabilities: An Examination of Measurement Tools

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