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Assessing Knowledge and Attitudes about End of Life: Evaluation of Three Instruments Designed for Adults with Intellectual Disability

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Title: Assessing Knowledge and Attitudes about End of Life: Evaluation of Three Instruments Designed for Adults with Intellectual Disability
Language: English
Authors: Stancliffe, R. J. (ORCID 0000-0003-4265-7433), Wiese, M. Y., Read, S., Jeltes, G., Clayton, J. M.
Source: Journal of Applied Research in Intellectual Disabilities. Nov 2017 30(6):1076-1088.
Availability: Wiley-Blackwell. 350 Main Street, Malden, MA 02148. Tel: 800-835-6770; Tel: 781-388-8598; Fax: 781-388-8232; e-mail: cs-journals@wiley.com; Web site: http://www.wiley.com/WileyCDA
Peer Reviewed: Y
Page Count: 13
Publication Date: 2017
Document Type: Journal Articles
Reports - Research
Descriptors: Test Construction, Psychometrics, Decision Making, Adults, Intellectual Disability, Planning, Death, Caregivers, Test Validity, Test Reliability, Correlation, Aging (Individuals), Attitude Measures, Knowledge Level
DOI: 10.1111/jar.12358
ISSN: 1360-2322
Abstract: Background: This paper examines the development and psychometric characteristics of three instruments about end of life, designed for use with adults with intellectual disability (ID). Respectively, the instruments assess understanding of the concept of death, end-of-life planning, and fear of death. Methods: Part 1: instruments were developed or adapted, and pilot tested with 11 adults with ID and 2 disability staff. Part 2: 39 adults with ID and 40 disability staff were assessed on all three instruments. Results: We evaluated comprehensibility, internal consistency, inter-rater reliability, subscale: total score correlations, missing data, and withdrawal. Psychometric findings were mostly good. Overall, 23% of participants with ID withdrew at some point. This outcome may have been as much due to assessment fatigue as to sensitive content. There were no adverse events. Conclusions: People with ID can reliably complete assessments about end-of-life. Generally, each instrument was found to be comprehensible, reliable and valid.
Abstractor: As Provided
Entry Date: 2017
Accession Number: EJ1156948
Database: ERIC
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  Value: <anid>AN0125591787;e0301nov.17;2018Aug13.16:03;v2.2.500</anid> <title id="AN0125591787-1">Assessing knowledge and attitudes about end of life: Evaluation of three instruments designed for adults with intellectual disability. </title> <p>Background: This paper examines the development and psychometric characteristics of three instruments about end of life, designed for use with adults with intellectual disability (ID). Respectively, the instruments assess understanding of the concept of death, end ‐ of ‐ life planning, and fear of death. Methods: Part 1: instruments were developed or adapted, and pilot tested with 11 adults with ID and 2 disability staff. Part 2: 39 adults with ID and 40 disability staff were assessed on all three instruments. Results: We evaluated comprehensibility, internal consistency, inter ‐ rater reliability, subscale: total score correlations, missing data, and withdrawal. Psychometric findings were mostly good. Overall, 23% of participants with ID withdrew at some point. This outcome may have been as much due to assessment fatigue as to sensitive content. There were no adverse events. Conclusions: People with ID can reliably complete assessments about end ‐ of ‐ life. Generally, each instrument was found to be comprehensible, reliable and valid.</p> <p>assessment; death; end of life; fear of death; intellectual disability; planning; questionnaire; staff</p> <p>Measurement is fundamental to research. Research can be hampered by the lack of suitable assessment instruments, especially in relation to newer research topics such as people with intellectual disability (ID) and end ‐ of ‐ life (EOL) issues. This paper reports on three instruments used to assess adults with intellectual disability on issues related to EOL.</p> <hd id="AN0125591787-2">Concerns Related to Self ‐ Report Assessments on End of Life for Adults with ...</hd> <p>Evaluation of any assessment must deal with reliability and validity, but for adults with intellectual disability and EOL there are additional concerns. These are (i) the cognitive and communication needs of this group, and (ii) the sensitive nature of the topic. In part, both issues can be evaluated by monitoring missing data due to (i) inability to understand or answer assessment questions, or (ii) because the person finds the topic too confronting, is unwilling to answer (some) questions, and may even withdraw from the assessment process. Researchers have an ethical responsibility to actively ensure that participants know they can withdraw at any time, and to monitor and report any adverse events.</p> <hd id="AN0125591787-3">Untitled</hd> <p>Assessing knowledge, understanding, or internal emotional states such as fear involves asking the individual to self ‐ report. Instruments are designed to meet the cognitive and communication needs of people with intellectual disability, typically through simplified item wording and easier response options (Finlay & Lyons, [<reflink idref="bib4" id="ref1">4</reflink>] ; Stancliffe, Wilson, Bigby, Balandin, & Craig, [<reflink idref="bib13" id="ref2">13</reflink>] ).</p> <p>Researchers have identified desirable linguistic and other features that make questions easier to understand and respond to by people with intellectual disability. These include avoiding negative wording and the passive tense; using simple sentences; keeping meaning and vocabulary simple and clear; avoiding uncommon or technical terms; using pictures of concrete concepts to increase understanding and responsiveness; using concrete examples when asking about abstract concepts; and employing simple response scales (Fang et al., [<reflink idref="bib3" id="ref3">3</reflink>] ; Finlay & Lyons, [<reflink idref="bib4" id="ref4">4</reflink>] ). One approach to quantifying comprehensibility is to use readability statistics (Stancliffe et al., [<reflink idref="bib13" id="ref5">13</reflink>] ). Velez and Ashworth ([<reflink idref="bib20" id="ref6">20</reflink>] ) proposed using readability formulas when designing and testing questionnaires. When interviewing people with intellectual disability about sensitive or taboo content, Finlay and Lyons ([<reflink idref="bib4" id="ref7">4</reflink>] ) recommended use of vignettes and/or asking what other people would do.</p> <p>Using mainstream instruments without modification often presents difficulties for adults with intellectual disability with understanding questions and communicating answers (Finlay & Lyons, [<reflink idref="bib4" id="ref8">4</reflink>] ; Stancliffe et al., [<reflink idref="bib13" id="ref9">13</reflink>] ), and can result in much missing data, preventing people with intellectual disability the from expressing their views, and creating difficulties for researchers because of data loss (Stancliffe et al., [<reflink idref="bib13" id="ref10">13</reflink>] ). Therefore, evaluation of self ‐ report assessments for people with intellectual disabilityshould include analysis of missing data, to help identify how appropriate the instrument is for this population (Stancliffe et al., [<reflink idref="bib13" id="ref11">13</reflink>] ).</p> <p>These issues have led to the creation of many intellectual disability ‐ specific instruments (Finlay & Lyons, [<reflink idref="bib4" id="ref12">4</reflink>] ). However, instrument development should not take place in a vacuum. Where possible, intellectual disability researchers should build on available mainstream knowledge and instruments. Thus, it is common practice to adapt existing mainstream assessments and to test the modified versions for usability, reliability and validity when assessing people with intellectual disability.</p> <hd id="AN0125591787-4">Untitled</hd> <p>EOL is a sensitive, even taboo topic often avoided by caregivers of concern that the person with ID will become upset (Kirkendall, Linton, & Farris, [<reflink idref="bib8" id="ref13">8</reflink>] ; Todd, [<reflink idref="bib16" id="ref14">16</reflink>] , [<reflink idref="bib17" id="ref15">17</reflink>] ; Wiese, Stancliffe, Read, Jeltes, & Clayton, [<reflink idref="bib23" id="ref16">23</reflink>] ). Such concerns raise the question of whether people with intellectual disability would be willing to talk about these issues or instead find them too distressing.</p> <p>The appropriateness of these concerns has not been evaluated directly by researchers, although indirect evidence suggests that such worries may be overstated. Becoming upset is a normal response to discussing dying and death. That said, Tuffrey ‐ Wijne, Bernal, Butler, Hollins, and Curfs ([<reflink idref="bib19" id="ref17">19</reflink>] ) noted that adults with mild or moderate intellectual disability “relished the opportunity” (p. 85) to discuss EOL issues. McEvoy, MacHale, and Tierney ([<reflink idref="bib10" id="ref18">10</reflink>] ) interviewed adults with intellectual disability about death and reported that “No person chose to end the interview… subsequent follow ‐ up with staff indicated no evidence of ill effects from the interview process” (p. 195). Until recently, dying and death were rarely considered by intellectual disability researchers (Todd, [<reflink idref="bib15" id="ref19">15</reflink>] ), so some basic instruments for EOL research have yet to be developed.</p> <p>Guscia, Harries, Kirby, Nettelbeck, and Taplin ([<reflink idref="bib7" id="ref20">7</reflink>] ) noted that “other factors also require consideration in establishing an instrument's suitability …; for example, completion time, assessor training requirements, ease of administration” (p. 154). There is also the issue of instrument content acceptability to participants. Withdrawal provides one indication that the content may be unacceptable. We will also briefly comment on these issues in our evaluation of EOL assessments.</p> <hd id="AN0125591787-5">The Current Study</hd> <p>This study examined three instruments, (i) the Concept of Death Questionnaire (CODQ) (McEvoy et al., [<reflink idref="bib10" id="ref21">10</reflink>] ), (ii) the End ‐ of ‐ Life Planning Scale (EOLPS) (Wiese et al., [<reflink idref="bib22" id="ref22">22</reflink>] ), and (iii) a revised version of the Collett ‐ Lester Fear of Death Scale, version 3.0 (FODS3.0)(Lester & Abdel ‐ Khalek, [<reflink idref="bib9" id="ref23">9</reflink>] ). Each was used with a sample of adults with intellectual disability and a sample of disability support staff. Assessment findings and group comparisons, involving the same participants as the current study, are reported in a companion paper (Stancliffe, Wiese, Read, Jeltes, & Clayton, [<reflink idref="bib12" id="ref24">12</reflink>] ). The current study examines the development and psychometric characteristics of these instruments.</p> <p>Because measurement approaches are still developing, we needed to adopt somewhat different instrument ‐ development approaches to the three EOL areas.</p> <hd id="AN0125591787-6">Untitled</hd> <p>Given the availability of the CODQ (McEvoy et al., [<reflink idref="bib10" id="ref25">10</reflink>] ), we undertook the first independent psychometric evaluation of this instrument.</p> <hd id="AN0125591787-7">Untitled</hd> <p>There was no available EOL ‐ planning assessment, so we developed a new intellectual disability ‐ specific instrument, the EOLPS (Wiese et al., [<reflink idref="bib22" id="ref26">22</reflink>] ). This study reports on the development and psychometric evaluation of this instrument.</p> <hd id="AN0125591787-8">Untitled</hd> <p>We adapted a mainstream assessment, the FODS3.0 (Lester & Abdel ‐ Khalek, [<reflink idref="bib9" id="ref27">9</reflink>] ) to measure fear of death by people with intellectual disability. Here, we report the process of adaptation and the results of psychometric evaluation.</p> <p>Details of pilot testing procedures, instrument development and modification are set out in the Method section. The Results section contains the psychometric findings.</p> <hd id="AN0125591787-9">METHOD</hd> <p>Our study had two parts. Part 1 involved developing or modifying the instruments, pilot testing and refinement. In Part 2, the final versions were used with adults with intellectual disability and disability staff to evaluate each instrument's psychometric properties (reported in the current paper) and to evaluate participants’ substantive responses (see Stancliffe et al., [<reflink idref="bib12" id="ref28">12</reflink>] ). To help with continuity, we present the Part 1 method and results, followed by the Part 2 method and results.</p> <p>A project advisory group provided feedback and advice about the instruments used in the current study. This group consisted of a disability service manager, a self ‐ advocate with intellectual disability, a parent of an adult child with intellectual disability, a palliative pastoral ‐ care coordinator, a clinical nurse consultant (advance care planning), a senior intensive ‐ care specialist, a senior academic lawyer and the four Sydney ‐ based authors (RJS, MYW, GJ and JMC). All had expertise in aspects of EOL.</p> <hd id="AN0125591787-10">Untitled</hd> <p>We obtained University of Sydney (no. 2014/061) ethics approval. Written consent was given by all participants.</p> <hd id="AN0125591787-11">PART 1 METHOD: INSTRUMENT DEVELOPMENT AND PILOT TESTING</hd> <p>Here we describe the development and pilot testing of the three instruments. Brief descriptions of the final versions of each are presented in the Part 2 section of the Method.</p> <p>The authors had extensive EOL experience to inform instrument development, including intellectual disability ‐ specific EOL research (RJS, MYW, SR), EOL service delivery to adults with intellectual disability (GJ), and palliative care research and clinical palliative experience with the general population (JMC). This combined experience helped us to develop relevant, easy ‐ to ‐ understand content and assessment procedures, appropriate to people with intellectual disability.</p> <hd id="AN0125591787-12">Untitled</hd> <p>Eleven people with intellectual disability (seven men, four women) and two disability staff (both women) from two disability services in Sydney, Australia participated. Inclusion criteria were: 21+ years, no known terminal diagnosis and able to self ‐ consent to participation. Disability staff were permanently employed. Pilot participants were not involved in Part 2.</p> <hd id="AN0125591787-13">Untitled</hd> <p>Every participant did not necessarily complete all three instruments. Some chose to stop part way due to fatigue or comprehension difficulties (particularly with early versions of some instruments), personal choice, or time constraints. To minimise literacy and comprehension difficulties, each instrument was administered via a personal interview, with the interviewer reading the questions aloud and recording the answers. Authors RJS and MYW administered all assessments.</p> <hd id="AN0125591787-14">Untitled</hd> <hd id="AN0125591787-15">Untitled</hd> <p>The CODQ (McEvoy et al., [<reflink idref="bib10" id="ref29">10</reflink>] ) was designed for people with intellectual disability, so we hoped to use it unchanged. Our pilot testing with five participants with intellectual disability and two staff revealed that the CODQ worked satisfactorily, so no changes were made.</p> <hd id="AN0125591787-16">Untitled</hd> <p>We created the End ‐ of ‐ Life Planning Scale (EOLPS) (Wiese et al., [<reflink idref="bib22" id="ref30">22</reflink>] ) specifically for people with intellectual disability. The initial draft EOLPS was revised twice following review and discussion among several authors. It was then reviewed twice by the advisory group and further extensive changes made. Following additional refinement by the authors, pilot testing began (described below).</p> <hd id="AN0125591787-17">Untitled</hd> <p>Seven subscales were developed, based on the seven EOL planning content areas identified by Wiese ([<reflink idref="bib21" id="ref31">21</reflink>] ). Within each subscale, our key interest was whether people with intellectual disability understood that they could make that type of EOL decision for themselves (e.g., bequeathing), and whether they could outline a simple plan to ensure their EOL wishes were known, so EOLPS questions address these issues.</p> <hd id="AN0125591787-18">Untitled</hd> <p>Each section of the CODQ (McEvoy et al., [<reflink idref="bib10" id="ref32">10</reflink>] ) involved a short EOL vignette about a named fictional individual, followed by a consistent series of questions about the vignette. McEvoy et al.'s ([<reflink idref="bib10" id="ref33">10</reflink>] ) findings and our pilot testing showed that this approach worked well for people with intellectual disability, so we emulated this structure for the EOLPS. We added one or two photos to each vignette to depict key terms or situations (e.g., a photo of a ring in the bequeathing vignette about leaving the ring to a friend). Finlay and Lyons ([<reflink idref="bib4" id="ref34">4</reflink>] ) noted that pictures can increase understanding and responsiveness when interviewing people with intellectual disability. Pictures provide a concrete representation of aspects of the vignette and may reduce the memory load of verbally presented vignettes. Pictures about EOL have been used successfully with adults with intellectual disability (Tuffrey ‐ Wijne et al., [<reflink idref="bib19" id="ref35">19</reflink>] ).</p> <p>In wording each EOLPS vignette, we used simple words and short sentences to maximise understanding. In addition to expert review, we used readability statistics to assess ease of understanding and to check that wording modifications improved readability.</p> <hd id="AN0125591787-19">Untitled</hd> <p>We used a three ‐ point scoring system simple enough for people with intellectual disability to communicate different responses (cf Stancliffe & Parmenter, [<reflink idref="bib11" id="ref36">11</reflink>] ). Fang et al. ([<reflink idref="bib3" id="ref37">3</reflink>] ) found that adults with intellectual disability respond more consistently to a 3 ‐ point response scale than a 5 ‐ point scale. To accommodate the limited vocabulary of many people with intellectual disability, there was no scoring requirement for use of technical terms like “advance care planning” when answering EOLPS questions.</p> <hd id="AN0125591787-20">Untitled</hd> <p>The EOLPS was piloted with eight adults with intellectual disability over multiple separate sessions with refinements between sessions. Some sessions involved one researcher administering the EOLPS and another observing. Sometimes a disability staff member was also present and provided feedback. Pilot testing resulted in multiple revisions of vignette and question content and wording, changes of pictures and refinement of item scoring.</p> <hd id="AN0125591787-21">Untitled</hd> <p>Initial review of the FODS3.0 revealed multiple limitations for use with adults with intellectual disability, so we modified it to create the FODS3.0 ‐ intellectual disability. We retained the item content and factor structure of the FODS3.0, but changed the order of presentation of the factors, item wording, response scale and mode of administration and responding. These changes arose initially from review and discussion among the researchers and by the advisory group, followed by pilot testing and further refinement.</p> <hd id="AN0125591787-22">Untitled</hd> <p>The FODS 3.0 presents the four 7 ‐ item factors in the order: own death, own dying, death of others and dying of others. We changed the order to have dying precede death (as it does in real life), and others’ dying and death administered before one's own, as it is easier to start with a situation for others and presumably is less confronting than contemplating one's own demise. The order of the items within each subscale was unchanged.</p> <hd id="AN0125591787-23">Untitled</hd> <p>The Flesch Reading ‐ Ease Test (Flesch, [<reflink idref="bib5" id="ref38">5</reflink>] ) readability score was 67.3 (U.S. 8th grade) for the FODS 3.0 items, underlining likely comprehension difficulties. We simplified the wording for 26 of the 28 items. Two items were unchanged and two others had very minor changes of one or two words. Major wording changes were made to simplify most other items. For example, the FODS 3.0 item “Being reminded that you are going to go through the experience also one day” was changed to “Being reminded that one day you will die too”. We made the questions shorter—FODS 3.0 items had 35% more words than FODS 3.0 ‐ intellectual disability items. We altered long, complex or unfamiliar words. For example, the FODS 3.0 item “Watching the deterioration of the person's mental abilities” was changed to “Watching the person's mind get sicker”.</p> <hd id="AN0125591787-24">Untitled</hd> <p>The FODS 3.0 has a 5 ‐ point Likert response scale. We changed the FODS 3.0 ‐ intellectual disability to a 3 ‐ point scale (Fang et al., [<reflink idref="bib3" id="ref39">3</reflink>] ).</p> <hd id="AN0125591787-25">Untitled</hd> <p>Among the general community, FODS 3.0 respondents circle a number between 1 and 5 to indicate “How disturbed or made anxious” they are about each item (Lester & Abdel ‐ Khalek, [<reflink idref="bib9" id="ref40">9</reflink>] , p. 84). Based on Cuskelly, Moni, Lloyd, and Jobling ([<reflink idref="bib1" id="ref41">1</reflink>] ), we developed a 3 ‐ point visual response scale (a “concrete referent”) for the FODS 3.0 ‐ intellectual disability. This also enabled participants to respond by pointing if desired. This card depicted three vertical shaded small, medium and large bars, corresponding to the FODS 3.0 ‐ intellectual disability responses “Not frightened”, “A bit frightened”, and “Very frightened”. These words were printed below the relevant bar. Before asking the first question, the card was placed in front of the participant and explained.</p> <hd id="AN0125591787-26">Untitled</hd> <p>Because of recruitment delays and logistical difficulties, we only piloted the FODS 3.0 with one participant with intellectual disability and two staff. Methodologically, piloting was similar to the EOLPS, and led to successive additional changes, mostly refinement of question wording.</p> <hd id="AN0125591787-27">PART 1 RESULTS: PILOT TESTING</hd> <hd id="AN0125591787-28">Untitled</hd> <p>Based on readability scores using the Flesch Reading Ease Test (Flesch, [<reflink idref="bib5" id="ref42">5</reflink>] ), and item ‐ difficulty characteristics noted by Finlay and Lyons ([<reflink idref="bib4" id="ref43">4</reflink>] ), we documented the difficulty of the CODQ, EOLPS and FODS3.0 ‐ intellectual disability in Table [NaN] . Flesch scores of 90–100 are considered very easy to read (a U.S. 5th grade level). Scores of 80–90 equate to easy reading (6th grade) and of 70–80 indicate fairly easy reading (7th grade).</p> <p>Instrument characteristics associated with item difficulty</p> <p> <ephtml> <table><tr><th align="left">Characteristic</th><th align="left">Scale</th></tr><tr><th align="left">CODQ</th><th align="left">EOLPS</th><th align="left">FODS 3.0 ‐ intellectual disability</th></tr><tr><td align="left">Vignettes</td></tr><tr><td align="left">Number of vignettes</td><td align="left">3</td><td align="left">7</td><td align="left">na</td></tr><tr><td align="left">Negatively worded sentences (“no”, “not” or “never” part of wording)</td><td align="left">10%</td><td align="left">10%</td><td align="left">na</td></tr><tr><td align="left">Passive sentences</td><td align="left">42%</td><td align="left">9%</td><td align="left">na</td></tr><tr><td align="left">Average words per sentence</td><td align="left">6.8</td><td align="left">11.1</td><td align="left">na</td></tr><tr><td align="left">Readability (Flesch Reading Ease)</td><td align="left">81.7</td><td align="left">84.5</td><td align="left">na</td></tr><tr><td align="left">Questions</td></tr><tr><td align="left">Number of questions</td><td align="left">13</td><td align="left">21</td><td align="left">28</td></tr><tr><td align="left">Negative questions (“no”, “not” or “never” part of wording)</td><td align="left">23%</td><td align="left">14%</td><td align="left">14%</td></tr><tr><td align="left">Passive sentences</td><td align="left">0%</td><td align="left">33%</td><td align="left">3%</td></tr><tr><td align="left">Average words per sentence</td><td align="left">7.5</td><td align="left">15.0</td><td align="left">6.0</td></tr><tr><td align="left">Readability (Flesch Reading Ease)</td><td align="left">74.3</td><td align="left">80.3</td><td align="left">85.9</td></tr><tr><td align="left">Number of pictures</td><td align="left">0</td><td align="left">10 photos</td><td align="left">0</td></tr><tr><td align="left">Responses</td></tr><tr><td align="left">Response scale</td><td align="left">3 ‐ point</td><td align="left">3 ‐ point</td><td align="left">3 ‐ point, concrete ‐ referent scale</td></tr></table> </ephtml> </p> <p>1 na, not applicable.</p> <ulist> <item>2 The higher the Flesch Reading ‐ Ease Test score, the easier the document is to understand.</item> <item>3 Readability of CODQ questions was assessed without including the probes “Why do you think that?”</item> <item>4 Readability of all FODS 3.0 ‐ intellectual disability questions was assessed without the stem “How frightened are you of …”.</item> </ulist> <hd id="AN0125591787-29">PART 2 METHOD: PSYCHOMETRIC EVALUATION</hd> <hd id="AN0125591787-30">Untitled</hd> <p>Participants were 39 adults with intellectual disability and 40 disability staff. They came from five disability services providing sheltered employment and/or community living to adults with intellectual disability. Inclusion criteria for all participants were the same as Part 1.</p> <hd id="AN0125591787-31">Untitled</hd> <p>Participants with intellectual disability averaged 48.62 (SD = 11.55) years. There were 25 men and 14 women. Based on agency records or staff report, level of intellectual disability ranged from mild (n = 26) to moderate (n = 12) (1 missing). Many had additional disability diagnoses, the most common being psychiatric disability (n = 16), and epilepsy (n = 8).</p> <p>Overall 17 people lived alone, 11 lived with others with disability, and 11 lived with others without disability (e.g., family). The 20 participants with intellectual disability with drop ‐ in staffing received weekly staff support on an average of 2.8 days for an average total of 9.7 hr. Only five people had paid support overnight (all had sleepover staffing). Some 28 people were employed, 23 in sheltered employment and five in mainstream jobs.</p> <p>Only one person with intellectual disability had received professional bereavement support (counsellor), and none reported having EOL training. Almost all had experienced the death of others (e.g., family, friend), with only two people (5%) reporting no such experience.</p> <hd id="AN0125591787-32">Untitled</hd> <p>Staff participants (31 direct ‐ support workers, nine managers; 13 men and 27 women) had worked in disability for an average of 7.6 years, and in their current position for 4.6 years. Mean age was 41.60 (SD = 12.40) years. Half (n = 20) had completed a technical college qualification, and a further 15 had a university degree. Most (n = 32) had received no EOL training. Most with such training (n = 7) had completed a short course. All staff participants had experienced the death of others, and 27 had experienced the death of a person with intellectual disability.</p> <hd id="AN0125591787-33">Untitled</hd> <p>All instruments were administered by one of the first two authors (RJS or MYW). All three EOL instruments were administered individually, with the interviewer reading aloud the vignettes (if applicable) and the questions. Repetition and paraphrasing questions to aid understanding were permitted. The interviewer scored the person's response to each question, using verbal probes as needed to clarify answers and maximise accurate scoring. For each EOLPS item, the interviewer placed a single sheet in front of the interviewee which showed the photo(s) for that item with the vignette printed below. During the FODS 3.0 ‐ intellectual disability, the concrete referent was placed in front of each interviewee and explained, so interviewees could point to an answer if they wished. The CODQ was always asked first, followed by the EOLPS, then the FODS 3.0 ‐ intellectual disability. The fixed presentation order for these three assessments was based on a two ‐ part rationale. Firstly, we were concerned that asking about fear of death before anything else could risk inducing fear on subsequent instruments (hence FODS 3.0 ‐ intellectual disability was assessed last). Secondly, it was a natural progression to ask about understanding death (CODQ) before questions about end ‐ of ‐ life planning (EOLPS).</p> <p>Within each instrument, the items were presented in the same order, except for the CODQ, where we used a random vignette order as specified by McEvoy et al. ([<reflink idref="bib10" id="ref44">10</reflink>] ). All participants were periodically asked how they were coping and if they wanted to stop, especially if there were indications of discomfort.</p> <hd id="AN0125591787-34">Untitled</hd> <hd id="AN0125591787-35">Untitled</hd> <p>The CODQ (McEvoy et al., [<reflink idref="bib10" id="ref45">10</reflink>] ) assesses understanding of the five components of death (Causality, Finality, Non ‐ functionality, Universality, and Inevitability). Most items relate to three vignettes. For example, one vignette states “Sheila's Mother is very ill in hospital. One day Sheila is told her mother is dead.” The interviewer reads each vignette aloud then asks the same four questions. With 13 items, CODQ total scores can range from 0 to 26. The CODQ has α = 0.75 for total CODQ scores and inter ‐ rater agreement of r<subs>s</subs> = 0.87, with an average 79.8% agreement (McEvoy et al., [<reflink idref="bib10" id="ref46">10</reflink>] ).</p> <hd id="AN0125591787-36">Untitled</hd> <p>The EOLPS has seven subscales: (<reflink idref="bib1" id="ref47">1</reflink>) Bequeathing, (<reflink idref="bib2" id="ref48">2</reflink>) Preferred place of care, (<reflink idref="bib3" id="ref49">3</reflink>) Funeral wishes, (<reflink idref="bib4" id="ref50">4</reflink>) Preferred carers, (<reflink idref="bib5" id="ref51">5</reflink>) Advance care planning, (<reflink idref="bib6" id="ref52">6</reflink>) Things to take with me and (<reflink idref="bib7" id="ref53">7</reflink>) Organ donation. Each subscale starts with a vignette read aloud by the interviewer. For example, the Bequeathing vignette says “Nina has a pretty ring. Her best friend Jill loves it. Nina thinks it would be nice if Jill could have the ring after Nina dies” and has a colour photo of a ring and a separate photo of a woman (Nina) looking pensive.</p> <p>Each subscale has three questions. Each is scored 0–2, so subscale totals range from 0 to 6. With 21 items, EOLPS total scores range from 0 to 42. Question wording varies from one subscale to the next to match the vignette content, but the meaning of each question is consistent across each subscale.</p> <p>Question 1 asks “Who decides if …”. For the Bequeathing subscale this question continues “who will get Nina's ring after Nina dies?” Question 2 asks if the person could decide. Question 3 asks what the person can do now (i.e., while alive and well) to ensure their wish is known. There is no requirement to use technical words such as “will”, so long as the person can explain in basic terms what is planned.</p> <p>Zero is scored for any EOLPS question with no response, an unintelligible or irrelevant answer. The reason for this approach is that if the person cannot answer clearly they are probably not able to exercise their right to decide or to generate and convey their EOL plan.</p> <hd id="AN0125591787-37">Untitled</hd> <p>The FODS 3.0 ‐ intellectual disability (Lester & Abdel ‐ Khalek, [<reflink idref="bib9" id="ref54">9</reflink>] ) contains 28 items in four 7 ‐ item factors: (a) others’ dying, (b) others’ death, (c) your own dying and (d) your own death. Questions ask “How frightened are you of …”. The 3 ‐ point response scale, 1 (not frightened), 2 (a bit frightened) and 3 (very frightened), is supported by a 3 ‐ point pictorial concrete ‐ referent scale. Pointing is an acceptable response. Each 7 ‐ item factor has a total score ranging from 7 to 21. FODS3.0 ‐ intellectual disability total scores range from 28 to 84.</p> <hd id="AN0125591787-38">Untitled</hd> <p>Non ‐ responses (or irrelevant, unintelligible or “don't know” responses) provide no basis to determine the degree of fear, so we treated FODS 3.0 ‐ intellectual disability non ‐ responses as missing data.</p> <hd id="AN0125591787-39">PART 2 RESULTS: PSYCHOMETRIC EVALUATION</hd> <hd id="AN0125591787-40">Untitled</hd> <p>We did not record administration time for each instrument, but the time to complete all three instruments with participants with intellectual disability was 20–30 min. This suggests typical administration time for each instrument is 7–10 min.</p> <hd id="AN0125591787-41">Untitled</hd> <p>To evaluate missing data, we needed to (i) identify who withdrew and at what point, and (ii) distinguish between questions not asked (because the person had withdrawn) and questions that were asked but no scoreable response was given.</p> <hd id="AN0125591787-42">Untitled</hd> <p>The number of participants with intellectual disability who withdrew before or during each of the three assessments is shown in Figure [NaN] . One staff member withdrew, at the start of the FOD 3.0 ‐ intellectual disability. As noted, assessments were presented in a fixed order—CODQ, EOLPS then FODS 3.0 ‐ intellectual disability—so withdrawal usually also meant subsequent instruments were not administered. Significantly more participants with intellectual disability (n = 9, 23.1%) withdrew from one or more EOL assessments than staff (n = 1, 2.5%), χ<sups>2</sups> = 9.54, N = 79, df = 1, p < .01.</p> <p>With only one staff member withdrawing from a single instrument (FODS 3.0 ‐ intellectual disability), it seems that all three assessments were acceptable to this group and did not result in significant discomfort. For participants with intellectual disability, only one person (2.6%) withdrew from CODQ assessment, suggesting good acceptability. Excluding those who were not assessed due to withdrawal from an instrument administered earlier, four (10.3%) participants with intellectual disability withdrew from the EOLPS and five (12.8%) withdrew from the FODS 3.0 ‐ intellectual disability.</p> <hd id="AN0125591787-43">Untitled</hd> <p>Participants with intellectual disability's stated reasons for withdrawal were mostly about perceived discomfort with instrument content. Some simply agreed with the interviewer's invitation to stop, but gave no reason for withdrawal. We immediately supported their request, but did not probe further for the exact reasons for withdrawing. Others offered unclear reasons—one participant said “Want to stop”. This could be seen as wishing not to discuss death, or that participation was too tiring. Others explained their reasons. One person with intellectual disability said “If it's death, I don't want to think about it” and commented that she did not like the EOLPS photos.</p> <hd id="AN0125591787-44">Untitled</hd> <p>We did not record interviewer prompts about stopping, but are confident that every participant was offered the opportunity at least once (usually several times). Only nine participants with intellectual disability (23%) withdrew, and only one (2.6%) declined to respond to any EOL assessment items. Only one staff participant (2.5%) withdrew. Most participants in both groups declined the offer to stop and chose to continue. In a few cases, after choosing to continue, a person with intellectual disability persisted with several items before then stopping. We propose that the procedures were effective in empowering participants in both groups to stop the assessment if they wished. The absence of adverse events provides further evidence that participants made appropriate judgements about withdrawal.</p> <hd id="AN0125591787-45">Untitled</hd> <hd id="AN0125591787-46">Untitled</hd> <hd id="AN0125591787-47">Untitled</hd> <p>Our findings for Cronbach's alpha are shown in Table [NaN] .</p> <p>Cronbach's alpha and subscale: total score Spearman correlation by group for each scale</p> <p> <ephtml> <table><tr><th align="left">Scale</th><th align="char">No. of items</th><th align="char">Participant group</th></tr><tr><th align="char">Intellectual disability</th><th align="char">Staff</th><th align="char">Full sample</th></tr><tr><th align="left">Subscale</th><th align="char">α</th><th align="char">r<sub>s</sub></th><th align="char">α</th><th align="char">r<sub>s</sub></th><th align="char">α</th><th align="char">r<sub>s</sub></th></tr><tr><td align="left">CODQ</td><td align="char" /><td align="char">(n = 38)</td><td align="char">(n = 40)</td><td align="char">(N = 78)</td></tr><tr><td align="left">Causality</td><td align="char" char=".">1</td><td align="char" char=".">–</td><td align="char" char=".">0.41**</td><td align="char" char=".">–</td><td align="char" char=".">na</td><td align="char" char=".">–</td><td align="char" char=".">0.45**</td></tr><tr><td align="left">Finality</td><td align="char" char=".">3</td><td align="char" char=".">1.00</td><td align="char" char=".">0.21</td><td align="char" char=".">1.00</td><td align="char" char=".">na</td><td align="char" char=".">0.84</td><td align="char" char=".">0.33**</td></tr><tr><td align="left">Cessation</td><td align="char" char=".">3</td><td align="char" char=".">0.02</td><td align="char" char=".">0.47**</td><td align="char" char=".">na</td><td align="char" char=".">na</td><td align="char" char=".">0.09</td><td align="char" char=".">0.55***</td></tr><tr><td align="left">Universality</td><td align="char" char=".">3</td><td align="char" char=".">0.95</td><td align="char" char=".">0.65***</td><td align="char" char=".">na</td><td align="char" char=".">na</td><td align="char" char=".">0.95</td><td align="char" char=".">0.59***</td></tr><tr><td align="left">Inevitability</td><td align="char" char=".">3</td><td align="char" char=".">0.91</td><td align="char" char=".">0.82***</td><td align="char" char=".">na</td><td align="char" char=".">na</td><td align="char" char=".">0.92</td><td align="char" char=".">0.79***</td></tr><tr><td align="left">Total score</td><td align="char" char=".">13</td><td align="char" char=".">0.80</td><td align="char" char=".">–</td><td align="char" char=".">1.00</td><td align="char" char=".">–</td><td align="char" char=".">0.81</td><td align="char" char=".">–</td></tr><tr><td align="left">EOLPS</td><td align="left" /><td align="char" char=".">(n = 33–37)</td><td align="char" char=".">(n = 40)</td><td align="char" char=".">(N = 73–77)</td></tr><tr><td align="left">Bequeathing</td><td align="char" char=".">3</td><td align="char" char=".">0.32</td><td align="char" char=".">0.77***</td><td align="char" char=".">na</td><td align="char" char=".">na</td><td align="char" char=".">0.63</td><td align="char" char=".">0.90***</td></tr><tr><td align="left">Place of care</td><td align="char" char=".">3</td><td align="char" char=".">0.58</td><td align="char" char=".">0.83***</td><td align="char" char=".">0.73</td><td align="char" char=".">1.00***</td><td align="char" char=".">0.77</td><td align="char" char=".">0.91***</td></tr><tr><td align="left">Funeral wishes</td><td align="char" char=".">3</td><td align="char" char=".">0.58</td><td align="char" char=".">0.89***</td><td align="char" char=".">na</td><td align="char" char=".">0.47**</td><td align="char" char=".">0.69</td><td align="char" char=".">0.94***</td></tr><tr><td align="left">Carers</td><td align="char" char=".">3</td><td align="char" char=".">0.48</td><td align="char" char=".">0.79***</td><td align="char" char=".">na</td><td align="char" char=".">na</td><td align="char" char=".">0.68</td><td align="char" char=".">0.90***</td></tr><tr><td align="left">Advance care</td><td align="char" char=".">3</td><td align="char" char=".">0.65</td><td align="char" char=".">0.78***</td><td align="char" char=".">1.00</td><td align="char" char=".">0.47**</td><td align="char" char=".">0.81</td><td align="char" char=".">0.87***</td></tr><tr><td align="left">Take with</td><td align="char" char=".">3</td><td align="char" char=".">0.56</td><td align="char" char=".">0.81***</td><td align="char" char=".">na</td><td align="char" char=".">na</td><td align="char" char=".">0.72</td><td align="char" char=".">0.89***</td></tr><tr><td align="left">Organ donation</td><td align="char" char=".">3</td><td align="char" char=".">0.67</td><td align="char" char=".">0.89***</td><td align="char" char=".">na</td><td align="char" char=".">na</td><td align="char" char=".">0.75</td><td align="char" char=".">0.92***</td></tr><tr><td align="left">Total score</td><td align="char" char=".">21</td><td align="char" char=".">0.91</td><td align="char" char=".">–</td><td align="char" char=".">0.92</td><td align="char" char=".">–</td><td align="char" char=".">0.96</td><td align="char" char=".">–</td></tr><tr><td align="left">FODS 3.0 ‐ ID</td><td align="char" /><td align="char" char=".">(n = 24–32)</td><td align="char" char=".">(n = 38–39)</td><td align="char" char=".">(N = 62–70)</td></tr><tr><td align="left">Dying of others</td><td align="char" char=".">7</td><td align="char" char=".">0.75</td><td align="char" char=".">0.79***</td><td align="char" char=".">0.77</td><td align="char" char=".">0.65***</td><td align="char" char=".">0.84</td><td align="char" char=".">0.81***</td></tr><tr><td align="left">Death of others</td><td align="char" char=".">7</td><td align="char" char=".">0.74</td><td align="char" char=".">0.86***</td><td align="char" char=".">0.76</td><td align="char" char=".">0.81***</td><td align="char" char=".">0.83</td><td align="char" char=".">0.85***</td></tr><tr><td align="left">Own dying</td><td align="char" char=".">7</td><td align="char" char=".">0.77</td><td align="char" char=".">0.87***</td><td align="char" char=".">0.86</td><td align="char" char=".">0.81***</td><td align="char" char=".">0.83</td><td align="char" char=".">0.76***</td></tr><tr><td align="left">Own death</td><td align="char" char=".">7</td><td align="char" char=".">0.80</td><td align="char" char=".">0.90***</td><td align="char" char=".">0.78</td><td align="char" char=".">0.78***</td><td align="char" char=".">0.85</td><td align="char" char=".">0.89***</td></tr><tr><td align="left">Total score</td><td align="char" char=".">28</td><td align="char" char=".">0.93</td><td align="char" char=".">–</td><td align="char" char=".">0.90</td><td align="char" char=".">–</td><td align="char" char=".">0.94</td><td align="char" char=".">–</td></tr></table> </ephtml> </p> <ulist> <item>5 **p < .01, ***p < .001.</item> <item>6 na, not analysed because items/scores with zero variance have been removed. Cronbach's alpha for Causality was not evaluated because that CODQ subscale contains only one item.</item> <item>7 1 item removed from analysis because of zero variance.</item> <item>8 10 items removed from analysis because of zero variance.</item> <item>9 15 items removed from analysis because of zero variance.</item> </ulist> <hd id="AN0125591787-48">Untitled</hd> <p>Table [NaN] reports correlations between the five CODQ component scores and CODQ total scores. Because most scores had non ‐ normal distributions, we used Spearman correlation. Lack of variance in staff scores meant that correlations could not be calculated.</p> <hd id="AN0125591787-49">Untitled</hd> <p>Inter ‐ rater reliability was evaluated for eight participants (five with intellectual disability, three staff) by having a second rater sit in during each person's interview and independently score responses. There was 100% agreement on scoring for every CODQ item and for CODQ total scores. The correlation between raters on CODQ total scores for all eight participants and for participants with intellectual disability was r<subs>s</subs> = 1.00. Correlations for staff could not be calculated because of non ‐ existent variance (all three scored at the scale maximum).</p> <hd id="AN0125591787-50">Untitled</hd> <hd id="AN0125591787-51">Untitled</hd> <p>Table [NaN] shows the findings on internal consistency.</p> <hd id="AN0125591787-52">Untitled</hd> <p>Table [NaN] presents Spearman correlations between the seven EOLPS subscale scores and EOLPS total scores. Because of lack of variance in staff scores, several correlations could not be calculated.</p> <hd id="AN0125591787-53">Untitled</hd> <p>Inter ‐ rater reliability was evaluated in the same manner as the CODQ. Table [NaN] shows EOLPS inter ‐ rater agreement findings.</p> <p>Percentage agreement by item and Spearman correlation between raters for each subscale total score by group for each scale</p> <p> <ephtml> <table><tr><th align="left">Scale</th><th align="char">No. of items</th><th align="char">Participant group</th></tr><tr><th align="char">Intellectual disability</th><th align="char">Staff</th><th align="char">Full sample</th></tr><tr><th align="left">Subscale</th><th align="char">%</th><th align="char">r<sub>s</sub></th><th align="char">%</th><th align="char">r<sub>s</sub></th><th align="char">%</th><th align="char">r<sub>s</sub></th></tr><tr><td align="left">EOLPS</td><td align="char" /><td align="char" char=".">(n = 5)</td><td align="char" char=".">(n = 3)</td><td align="char" char=".">(N = 8)</td></tr><tr><td align="left">Bequeathing</td><td align="char" char=".">3</td><td align="char" char=".">73</td><td align="char" char=".">0.62</td><td align="char" char=".">100</td><td align="char" char=".">na</td><td align="char" char=".">83</td><td align="char" char=".">0.78</td></tr><tr><td align="left">Place of care</td><td align="char" char=".">3</td><td align="char" char=".">100</td><td align="char" char=".">1.00</td><td align="char" char=".">100</td><td align="char" char=".">na</td><td align="char" char=".">100</td><td align="char" char=".">1.00</td></tr><tr><td align="left">Funeral wishes</td><td align="char" char=".">3</td><td align="char" char=".">100</td><td align="char" char=".">1.00</td><td align="char" char=".">100</td><td align="char" char=".">na</td><td align="char" char=".">100</td><td align="char" char=".">1.00</td></tr><tr><td align="left">Carers</td><td align="char" char=".">3</td><td align="char" char=".">100</td><td align="char" char=".">1.00</td><td align="char" char=".">100</td><td align="char" char=".">na</td><td align="char" char=".">100</td><td align="char" char=".">1.00</td></tr><tr><td align="left">Advance care</td><td align="char" char=".">3</td><td align="char" char=".">100</td><td align="char" char=".">1.00</td><td align="char" char=".">100</td><td align="char" char=".">na</td><td align="char" char=".">100</td><td align="char" char=".">1.00</td></tr><tr><td align="left">Take with</td><td align="char" char=".">3</td><td align="char" char=".">100</td><td align="char" char=".">1.00</td><td align="char" char=".">100</td><td align="char" char=".">na</td><td align="char" char=".">100</td><td align="char" char=".">1.00</td></tr><tr><td align="left">Organ donation</td><td align="char" char=".">3</td><td align="char" char=".">93</td><td align="char" char=".">1.00</td><td align="char" char=".">100</td><td align="char" char=".">na</td><td align="char" char=".">96</td><td align="char" char=".">1.00</td></tr><tr><td align="left">Total Score</td><td align="char" char=".">21</td><td align="char" char=".">95</td><td align="char" char=".">0.98</td><td align="char" char=".">100</td><td align="char" char=".">na</td><td align="char" char=".">97</td><td align="char" char=".">0.99</td></tr><tr><td align="left">FODS 3.0 ‐ intellectual disability</td><td align="char" /><td align="char" char=".">(n = 4–5)</td><td align="char" char=".">(n = 3)</td><td align="char" char=".">(N = 7–8)</td></tr><tr><td align="left">Dying of others</td><td align="char" char=".">7</td><td align="char" char=".">100</td><td align="char" char=".">1.00</td><td align="char" char=".">100</td><td align="char" char=".">1.00</td><td align="char" char=".">100</td><td align="char" char=".">1.00</td></tr><tr><td align="left">Death of others</td><td align="char" char=".">7</td><td align="char" char=".">100</td><td align="char" char=".">1.00</td><td align="char" char=".">100</td><td align="char" char=".">1.00</td><td align="char" char=".">100</td><td align="char" char=".">1.00</td></tr><tr><td align="left">Own dying</td><td align="char" char=".">7</td><td align="char" char=".">93</td><td align="char" char=".">1.00</td><td align="char" char=".">100</td><td align="char" char=".">1.00</td><td align="char" char=".">96</td><td align="char" char=".">1.00</td></tr><tr><td align="left">Own death</td><td align="char" char=".">7</td><td align="char" char=".">100</td><td align="char" char=".">1.00</td><td align="char" char=".">100</td><td align="char" char=".">1.00</td><td align="char" char=".">100</td><td align="char" char=".">1.00</td></tr><tr><td align="left">Total</td><td align="char" char=".">28</td><td align="char" char=".">98</td><td align="char" char=".">1.00</td><td align="char" char=".">100</td><td align="char" char=".">1.00</td><td align="char" char=".">99</td><td align="char" char=".">1.00</td></tr></table> </ephtml> </p> <ulist> <item>10 na, not able to be analysed because of zero variance.</item> <item>11 One participant with intellectual disability withdrew after item 8. Remaining FODS 3.0 ‐ intellectual disability items had four participants with intellectual disability.</item> </ulist> <hd id="AN0125591787-54">Untitled</hd> <hd id="AN0125591787-55">Untitled</hd> <p>As noted, no response to an FODS 3.0 ‐ intellectual disability item was scored as missing. Where up to two of the seven items were missing in a factor, we imputed the missing value to equal the mean of non ‐ missing scores for that factor. More than two missing items was considered too much for a factor score to be calculated. FODS 3.0 ‐ intellectual disability total scores were the sum of the four imputed factor scores.</p> <hd id="AN0125591787-56">Untitled</hd> <p>The internal consistency results are presented in Table [NaN] .</p> <hd id="AN0125591787-57">Untitled</hd> <p>Table [NaN] shows the Spearman correlations between the four FODS 3.0 ‐ intellectual disability factor scores and FODS 3.0 ‐ intellectual disability total scores.</p> <hd id="AN0125591787-58">Untitled</hd> <p>FODS 3.0 ‐ intellectual disability inter ‐ rater reliability was evaluated identically to preceding instruments and is shown in Table [NaN] .</p> <hd id="AN0125591787-59">Untitled</hd> <p>When CODQ and EOLPS questions are asked, non ‐ responses (no response, don't know, irrelevant or unintelligible responses) were assigned a substantive score, a score of zero indicating lack of knowledge. FODS 3.0 ‐ intellectual disability non ‐ responses were scored as missing and so could affect factor scores and total scores. It is therefore important to examine the missing FODS 3.0 ‐ intellectual disability data to see how many participants had missing FODS 3.0 ‐ intellectual disability factor scores and total scores due to non ‐ responding and, if relevant, identify problematic items.</p> <p>There were no disability ‐ staff non ‐ responses to FODS 3.0 ‐ intellectual disability items. For participants with intellectual disability, there were 17 instances of non ‐ responding, or 1.9% of all FODS 3.0 ‐ intellectual disability questions asked, suggesting this was a minor issue. Moreover, 11 of these non ‐ responses came from a single respondent, so that participant had only 2 of the 4 FODS 3.0 ‐ ID factor scores available, with the total FODS 3.0 ‐ intellectual disability also missing. This participant was the only person with FODS 3.0 ‐ intellectual disability factor scores or total score unavailable due to non ‐ responding. Of the other five participants with intellectual disability with non ‐ responses, four had only one non ‐ response and one had two non ‐ responses. Based on FODS 3.0 ‐ intellectual disability scoring rules, these missing items were imputed, so all five participants had all their FODS 3.0 ‐ intellectual disability factor scores and total score available for analysis.</p> <p>At the item level, 14 (50%) of FODS 3.0 ‐ intellectual disability items had between one and three participants provide non ‐ responses, but for 10 items this involved a single non ‐ response. Items 11, 13 and 14 had two non ‐ responses and item 26 had three (9.7% of participants with intellectual disability who were asked this question). These findings suggest no notable comprehension problems with individual items.</p> <hd id="AN0125591787-60">DISCUSSION</hd> <p>This study shows that people with intellectual disability can complete assessments about EOL issues. The three assessments have acceptable to excellent reliability, with evidence of several forms of validity. There were no adverse events. Compared to disability staff, more people with intellectual disability withdrew, suggesting that more people with intellectual disability experienced fatigue and/or discomfort. Any discomfort was managed effectively through offering participants the opportunity to withdraw from assessment, together with routine emotional support.</p> <p>We discuss each instrument separately, followed by examination of general issues, limitations and conclusions. Because the main focus was on use of these instruments with people with intellectual disability, we devote little attention to disability staff findings.</p> <hd id="AN0125591787-61">Untitled</hd> <hd id="AN0125591787-62">Untitled</hd> <p>Using a Flesch Reading ‐ Ease Test score of 80 or above as an indicator of easy comprehensibility, the CODQ vignettes were easy to understand (Table [NaN] ). Although the CODQ questions had somewhat lower readability scores, they were sufficiently comprehensible for people with intellectual disability to be able to answer. That said, both assessors reported a need to paraphrase CODQ question 2 from “What can Sheila's mother do now that she is not living anymore?” to “What can Sheila's mother do now that she is dead?”</p> <hd id="AN0125591787-63">Untitled</hd> <p>Streiner and Norman ([<reflink idref="bib14" id="ref55">14</reflink>] ) proposed that Cronbach's alpha of 0.5–0.7 shows acceptable internal consistency, 0.7–0.9 good, and above 0.9 excellent. For total CODQ scores for individuals with ID, McEvoy et al. ([<reflink idref="bib10" id="ref56">10</reflink>] ) reported α = 0.75, and we found α = 0.80, showing that the CODQ has good internal consistency. CODQ component scores also had good internal consistency except for Cessation. CODQ inter ‐ rater agreement was excellent. Other evidence of reliability came from correlations between CODQ component scores and total scores that ranged from 0.21 to 82 and averaged 0.51 for participants with intellectual disability.</p> <hd id="AN0125591787-64">Untitled</hd> <p>Stancliffe et al. ([<reflink idref="bib12" id="ref57">12</reflink>] ) and McEvoy et al. ([<reflink idref="bib10" id="ref58">10</reflink>] ) found that participants with mild intellectual disability scored higher on the CODQ than those with moderate ID, indicating better understanding. Further, Stancliffe et al. ([<reflink idref="bib12" id="ref59">12</reflink>] ) found that disability staff had higher CODQ scores than participants with intellectual disability. These findings provide evidence of criterion ‐ related validity, because these groups are expected to differ on an assessment of understanding.</p> <hd id="AN0125591787-65">Untitled</hd> <p>Almost all staff scored at the CODQ scale maximum (Stancliffe et al., [<reflink idref="bib12" id="ref60">12</reflink>] ), so it was not possible to calculate alpha or subscale:total correlations for staff, except alpha for the finality component and CODQ total scores.</p> <p>With cautions about the reliability of some CODQ component scores, available data show that this instrument is a valid and reliable instrument for assessing understanding of death by adults with ID. The independent psychometric data from the current study, complementing McEvoy et al.'s ([<reflink idref="bib10" id="ref61">10</reflink>] ) findings, strengthen this conclusion.</p> <hd id="AN0125591787-66">Untitled</hd> <p>To our knowledge the EOLPS is the first instrument for adults with intellectual disability to assess understanding and self ‐ determination about EOL planning.</p> <hd id="AN0125591787-67">Untitled</hd> <p>Readability scores for EOLPS vignettes and questions suggested they were easy to understand (Table [NaN] ). All participants looked at the photos for each item, and many individuals with intellectual disability pointed at or commented on the photos. We took no data on the role of photos in aiding comprehension, but anecdotally they appeared helpful, although one person commented that she did not like looking at these photos.</p> <hd id="AN0125591787-68">Untitled</hd> <p>For adults with intellectual disability, internal consistency was excellent for the EOLPS total scores (α = 0.91) and acceptable for five of the seven EOLPS subscales (0.56–0.67, Table [NaN] ). However, two subscales (Bequeathing, Carers) had unsatisfactory internal consistency (0.32 and 0.48, respectively), so it seems prudent to treat these scores with caution. Reliability was clearly demonstrated with high correlations between all EOLPS subscales scores and total scores for the full sample (0.87–0.94, mean = 0.90) and the intellectual disability sample (0.77–0.89, mean = 0.82). Inter ‐ rater agreement was excellent for six subscales, and acceptable for Bequeathing.</p> <hd id="AN0125591787-69">Untitled</hd> <p>Evidence for face and content validity came from several sources. Firstly, the seven EOLPS domains were based on multiple interviews and focus groups with community living staff who supported adults with intellectual disability, many of whom had experienced the death of a client with intellectual disability (Wiese, [<reflink idref="bib21" id="ref62">21</reflink>] ). Secondly, the EOLPS was reviewed in detail by the expert advisory group and subject to careful pilot testing. Evidence for criterion validity arises from Stancliffe et al.'s ([<reflink idref="bib12" id="ref63">12</reflink>] ) findings that (i) participants with mild intellectual disability had significantly higher EOLPS scores than those with moderate intellectual disability, and (ii) disability staff had much higher EOLPS scores than adults with ID. These group differences are each in the expected direction.</p> <hd id="AN0125591787-70">Untitled</hd> <p>Because of a ceiling effect for many staff (Stancliffe et al., [<reflink idref="bib12" id="ref64">12</reflink>] ), alpha and subscale:total correlations for staff were often unable to be calculated.</p> <p>In conclusion, the EOLPS has acceptable to excellent reliability, with evidence of several forms of validity.</p> <hd id="AN0125591787-71">Untitled</hd> <hd id="AN0125591787-72">Untitled</hd> <p>The readability score indicated that FODS 3.0 ‐ intellectual disability questions were easy to understand. This conclusion was supported by very low levels of non ‐ responding to FODS 3.0 ‐ intellectual disability items.</p> <hd id="AN0125591787-73">Untitled</hd> <p>Internal consistency of the original FOD 3.0 instrument is well established with the general population (Lester & Abdel ‐ Khalek, [<reflink idref="bib9" id="ref65">9</reflink>] ). For adults with intellectual disability and for disability staff, FODS 3.0 ‐ intellectual disability internal consistency was excellent for total scores and good for each of the four factors. For participants with intellectual disability, correlations between FODS 3.0 ‐ intellectual disability factor scores and the total score ranged from 0.79 to 0.90 (mean = 0.86), providing further evidence of reliability. FODS 3.0 ‐ intellectual disability inter ‐ rater agreement was excellent.</p> <hd id="AN0125591787-74">Untitled</hd> <p>Basing the FODS 3.0 ‐ intellectual disability closely on an existing, well ‐ researched fear ‐ of ‐ death instrument provides evidence of content validity. Compared to disability staff, Stancliffe et al. ([<reflink idref="bib12" id="ref66">12</reflink>] ) reported that adults with intellectual disability had significantly higher FODS 3.0 ‐ intellectual disability scores, indicating more fear. This result provides evidence of criterion ‐ related validity, because research on fears generally (not fear of death) shows individuals with intellectual disability are more fearful than people without intellectual disability (Duff et al., [<reflink idref="bib2" id="ref67">2</reflink>] ; Gullone, Cummins, & King, [<reflink idref="bib6" id="ref68">6</reflink>] ).</p> <hd id="AN0125591787-75">Untitled</hd> <p>Psychometric findings for staff data were similar to those for participants with intellectual disability.</p> <p>Overall, the evidence was strong for the reliability of the FODS 3.0 ‐ intellectual disability. There was evidence of content validity and criterion ‐ related validity.</p> <hd id="AN0125591787-76">Untitled</hd> <hd id="AN0125591787-77">Untitled</hd> <p>Kirkendall et al. ([<reflink idref="bib8" id="ref69">8</reflink>] ) noted widespread acceptance of the notion that “people with intellectual disabilities are unable to make decisions related to end of life and need to be protected.” (p. 4), suggesting possible risks when asking adults with intellectual disability about EOL. Therefore, it is important to consider how these participants reacted during assessment, and how any discomfort was managed.</p> <p>We encountered no adverse events. Some people with intellectual disability experienced transient emotional upset (as did a few disability staff members), but this resolved rapidly with routine emotional support. Although some content was challenging for some participants (e.g., the EOLPS photo of a coffin in an open grave), none seemed too confronting. During assessment, all participants were asked how they were coping (usually repeatedly) and offered the opportunity to stop. Overwhelmingly, they chose to continue and completed all assessments without significant discomfort. Some did withdraw, usually when prompted by the interviewer. When offered the opportunity to withdraw, people made an informed, self ‐ determined decision, usually to continue. We suggest that such practices be adopted during routine use of these instruments, so that people with intellectual disability have the opportunity to talk about EOL, but are offered the chance to stop, especially if it is discomforting. Our findings indicate that with administration safeguards, these instruments can be used with minimal risk of serious discomfort or adverse outcomes. Mild discomfort when discussing EOL is not unusual and, in itself, should not automatically exclude people with or without intellectual disability. We propose that it is better to support people to make their own judgements about their participation than to paternalistically protect them from a normal emotional response.</p> <p>Significantly more participants with intellectual disability (n = 9, 23.1%) than staff (n = 1, 2.5%) withdrew from assessment at some point. Participants with intellectual disability may have found the assessments somewhat more discomforting, but people with intellectual disability found the questions harder to answer (see Stancliffe et al., [<reflink idref="bib12" id="ref70">12</reflink>] ). That is, cognitive load and related assessment fatigue were no doubt greater for people with intellectual disability and may have contributed to the higher rate of withdrawal.</p> <p>With low or non ‐ existent staff withdrawal rates, all three instruments seemed acceptable to staff. Among participants with ID, the highest rate of withdrawal (12.8%) was from the FODS3.0 ‐ intellectual disability and the lowest (2.6%) from the CODQ. These results indicate moderate ‐ to ‐ good acceptability, but also point to the need to monitor participants with intellectual disability when administering these instruments.</p> <p>With only one intellectual disability participant withdrawal, the CODQ was evidently acceptable to participants with intellectual disability, mirroring McEvoy et al.'s ([<reflink idref="bib10" id="ref71">10</reflink>] ) findings. The higher rate of withdrawal by participants with intellectual disability from the EOLPS and FODS 3.0 ‐ intellectual disability may have been partly due to the fixed assessment order. Instruments asked later were presumably more affected by the cumulative effects of discomfort and/or assessment fatigue. Fewer people may have withdrawn from the EOLPS and the FODS 3.0 ‐ intellectual disability had these instruments been asked alone or first. Our initial concern that asking about fear of death might sensitise participants to react fearfully did not seem to be a problem in practice. There was no evident difference in participants’ emotional response to the FODS3.0 ‐ intellectual disability from their response to the CODQ or EOLPS. Therefore, our decision to present the FODS 3.0 ‐ ID last did not seem warranted, but we did not directly test this notion by presenting the FODS 3.0 ‐ ID earlier in the sequence of assessments.</p> <p>Withdrawal by 23% of participants with intellectual disability might suggest a problem with topic sensitivity or could be typical regardless of topic. When Stancliffe et al. ([<reflink idref="bib13" id="ref72">13</reflink>] ) assessed adults with intellectual disability using a loneliness assessment designed for the general community, non ‐ responsiveness was 75%. With an easier intellectual disability ‐ specific loneliness instrument, only 18% of participants with intellectual disability were non ‐ responsive, a result comparable with withdrawal by 23% in the current study. The large difference in responsiveness between the two loneliness instruments used by Stancliffe et al. ([<reflink idref="bib13" id="ref73">13</reflink>] ) suggests that item difficulty is more important than the sensitivity of the content.</p> <p>Use of fictional CODQ and EOLPS vignettes may have helped to minimise discomfort because participants responded to an EOL situation involving someone else, not themselves (Finlay & Lyons, [<reflink idref="bib4" id="ref74">4</reflink>] ). This notion is intuitively appealing, but we know of no research involving people with intellectual disability on sensitive content that compares questions about one's own views or experiences with vignette ‐ based assessment.</p> <hd id="AN0125591787-78">Untitled</hd> <p>For participants who withdrew, subsequent questions were not asked, resulting in missing data for those items and/or instruments. When a question is asked, but elicits no response (or an irrelevant, unintelligible or do not know response), there is a fundamental difference in scoring such non ‐ responses when assessing (i) knowledge and understanding (e.g., CODQ, EOLPS), and (ii) subjective factors such as emotions (e.g., fear). With the former instruments, a non ‐ response can be interpreted as indicating lack of knowledge or understanding, and scored accordingly. However, a non ‐ response when asked about fear cannot reasonably be interpreted as an indicator of fear, and should be treated as missing data.</p> <p>There was very little missing data due to non ‐ responses. As noted, in the CODQ and the EOLPS, non ‐ responses are assigned a score of zero and considered to indicate lack of understanding. For the FODS 3.0 ‐ intellectual disability, non ‐ responses constituted missing data. There was a low level of missing FODS 3.0 ‐ intellectual disability data for participants with intellectual disability (1.9%), and this only affected scores for one participant. That is, missing data due to non ‐ responding was not a problem for any instrument.</p> <hd id="AN0125591787-79">Untitled</hd> <p>Many aspects of death are abstract (Wiese et al., [<reflink idref="bib23" id="ref75">23</reflink>] ) and questions about abstract concepts are harder for people with intellectual disability to understand and answer. Finlay and Lyons ([<reflink idref="bib4" id="ref76">4</reflink>] ) recommended the use of concrete events when asking people with intellectual disability about abstract concepts. The use of vignettes (CODQ, EOLPS) and photos (EOLPS) was intended to operationalise this recommendation.</p> <hd id="AN0125591787-80">Untitled</hd> <p>At 7–10 min per instrument, administration time is reasonable. With familiarisation and some practice, we consider that anyone with experience of interviewing people with intellectual disability could use these instruments without special training, so long as they responded appropriately to signs of discomfort.</p> <hd id="AN0125591787-81">Untitled</hd> <p>One limitation arose from the fixed presentation order of the three assessments. It was not possible to tell whether withdrawal was due to the specific instrument content or the cumulative fatigue/stress of the preceding instruments. We focussed on ensuring participants knew about their right to withdraw and on promptly respecting their wishes. Future researchers should explicitly ask participants about their reasons for withdrawing, and systematically record and analyse these data.</p> <p>One unanswered question was whether individuals with greater fear of death were more likely to withdraw. We were unable to evaluate this notion because we assessed fear of death last, so almost all individuals who withdrew from a preceding instrument did not complete the FODS 3.0 ‐ intellectual disability. Future evaluations of acceptability and withdrawal should present the instruments on separate occasions and/or counterbalance the order of assessment. Logistically, it was not feasible for us to reduce assessment fatigue by presenting the three instruments on three separate occasions. Our failure to counterbalance was an oversight, which had the consequences just described. Counterbalancing assessment order would distribute withdrawal ‐ related missing data more equally across the three scales, as each would be presented last only one ‐ third of the time. Nevertheless, the problem described about determining the relationship between assessed fear of death and withdrawal from assessment would be reduced but not eliminated. Using a counterbalancing condition, the FODS 3.0 ‐ intellectual disability would only be presented first for one ‐ third of participants.</p> <p>The small amount of pilot testing of the FOD 3.0 ‐ intellectual disability was not ideal. Nevertheless, the Part ‐ 2 FOD 3.0 ‐ intellectual disability results were satisfactory and did not reveal unexpected administration problems that should have been remedied during piloting.</p> <p>We assessed adults with mild or moderate intellectual disability who could self ‐ consent. Therefore, the appropriateness of these instruments is unknown for individuals with intellectual disability with different characteristics.</p> <p>In proposing suggestions for future research, we echo the sentiments of Todd, Bernal, and Forrester ‐ Jones ([<reflink idref="bib18" id="ref77">18</reflink>] ) that research on EOL and intellectual disability should be included into other research topics. For example, the EOLPS could be used to assess one component of overall self ‐ determination. Likewise, one validity issue for the EOLPS is the relationship between self ‐ determination about EOL planning and self ‐ determination in other areas of life.</p> <p>Another key issue is the association between assessment results and real ‐ life behaviour. For example, does assessed fear of death relate to engagement in learning about EOL or the outcomes of such intervention; do people with higher EOLPS scores actually do more EOL planning? At present, the answers to these questions are unknown.</p> <p>Additional psychometric research is needed, including independent studies of reliability and validity for the EOLPS and FODS 3.0 ‐ ID. Evaluation of test ‐ retest reliability is necessary for all three instruments, to determine whether scores are stable over time, so they can be used with confidence in pre ‐ and post ‐ intervention research evaluating intervention effectiveness.</p> <p>We did not evaluate sensitivity to change. Given the evident ceiling effects for staff on the CODQ and EOLPS reported by Stancliffe et al. ([<reflink idref="bib12" id="ref78">12</reflink>] ), these instruments would be insensitive to change among staff because almost all scored at the scale maximum. Evaluating interventions with individuals with intellectual disability presupposes that the three instruments can detect clinically meaningful change. This issue too should be addressed in future research.</p> <hd id="AN0125591787-82">CONCLUSIONS</hd> <p>These three instruments for people with intellectual disability are potentially important for EOL research given that (i) “individuals with intellectual disabilities are often excluded from being direct participants and often research focuses on the perspectives of informal or formal caregivers” (Kirkendall et al., [<reflink idref="bib8" id="ref79">8</reflink>] , p. 10), (ii) people with intellectual disability are routinely omitted from planning and decision making about their own EOL (Kirkendall et al., [<reflink idref="bib8" id="ref80">8</reflink>] ), and (iii) a key outcome of proposed interventions for people with intellectual disability is to educate and empower them about EOL planning and decision making (Wiese et al., [<reflink idref="bib23" id="ref81">23</reflink>] ). These instruments can be used to identify individuals with knowledge gaps, low self ‐ determination or high levels of fear, and to evaluate intervention effectiveness.</p> <p>We acknowledge that there may be other important aspects of dying and death for which no assessments are available for use with adults with intellectual disability. Nevertheless, we believe that these three instruments represent important aspects of EOL, and that the availability of robust instruments represents a step forward for research and practice.</p> <hd id="AN0125591787-83">ACKNOWLEDGMENTS</hd> <p>This research was supported under the Australian Research Council's Linkage Projects scheme (Project number: LP130100300) with the assistance of a disability industry partner, Sunshine. The views expressed are those of the authors and are not necessarily those of the Australian Research Council or the industry partner.</p> <hd id="AN0125591787-84">CONFLICT OF INTEREST</hd> <p>None of the authors had a conflict of interest.</p> <ref id="AN0125591787-85"> <title>Footnotes</title> <blist> <bibl id="bib1" idref="ref41" type="bt">1</bibl> <bibtext>Copies of the following instruments are available on request from the first two authors: End ‐ of ‐ Life Planning Scale (EOLPS; Wiese, Stancliffe, Clayton, Read, & Jeltes, 22), and the revised Collett ‐ Lester Fear of Death Scale, version 3.0—intellectual disability (FODS3.0 ‐ ID). </bibtext> </blist> <blist> <bibl id="bib2" idref="ref48" type="bt">2</bibl> <bibtext>Under the Editorship of Professor Chris Hatton. </bibtext> </blist> </ref> <ref id="AN0125591787-86"> <title>REFERENCES</title> <blist> <bibtext>Cuskelly, M., Moni, K., Lloyd, J., & Jobling, A. (2013). Reliability of a method for establishing the capacity of individuals with an intellectual disability to respond to Likert scales. Journal of Intellectual & Developmental Disability, 38 (4), 318 – 324. </bibtext> </blist> <blist> <bibtext>Duff, R., La Rocca, J., Lizzet, A., Martin, P., Pearce, L., Williams, M., & Peck, C. (1981). A comparison of the fears of mildly retarded adults with children of their mental age and chronological age matched controls. Journal of Behaviour Therapy and Experimental Psychiatry, 12, 121 – 124. </bibtext> </blist> <blist> <bibl id="bib3" idref="ref3" type="bt">3</bibl> <bibtext>Fang, J., Fleck, M. P., Green, A., McVilly, K., Hao, Y., Tan, W., … Power, M. (2011). The response scale for the intellectual disability module of the WHOQOL: 5 ‐ point or 3 ‐ point. Journal of Intellectual Disability Research, 55 (6), 537 – 549. </bibtext> </blist> <blist> <bibl id="bib4" idref="ref1" type="bt">4</bibl> <bibtext>Finlay, W. M. L., & Lyons, E. (2001). Methodological issues in interviewing and using self ‐ report questionnaires with people with mental retardation. Psychological Assessment, 13, 319 – 335. </bibtext> </blist> <blist> <bibl id="bib5" idref="ref38" type="bt">5</bibl> <bibtext>Flesch, R. F. (1948). A new readability yardstick. Journal of Applied Psychology, 32, 221 – 233. </bibtext> </blist> <blist> <bibl id="bib6" idref="ref52" type="bt">6</bibl> <bibtext>Gullone, E., Cummins, R. A., & King, N. J. (1996). Self ‐ reported fears: A comparison study of youths with and without an intellectual disability. Journal of Intellectual Disability Research, 40, 227 – 240. </bibtext> </blist> <blist> <bibl id="bib7" idref="ref20" type="bt">7</bibl> <bibtext>Guscia, R., Harries, J., Kirby, N., Nettelbeck, T., & Taplin, J. (2006). Construct and criterion validities of the service need assessment profile (SNAP): A measure of support for people with disabilities. Journal of Intellectual & Developmental Disability, 31 (3), 148 – 155. </bibtext> </blist> <blist> <bibl id="bib8" idref="ref13" type="bt">8</bibl> <bibtext>Kirkendall, A., Linton, K., & Farris, S. (2016). Intellectual disabilities and decision making at end of life: A literature review. Journal of Applied Research in Intellectual Disabilities, Advance online publication. doi: 10.1111/jar.12270 </bibtext> </blist> <blist> <bibl id="bib9" idref="ref23" type="bt">9</bibl> <bibtext>Lester, D., & Abdel ‐ Khalek, A. (2003). The Collett ‐ Lester fear of death scale: A correction. Death Studies, 27 (1), 81 – 85. </bibtext> </blist> <blist> <bibl id="bib10" idref="ref18" type="bt">10</bibl> <bibtext>McEvoy, J., MacHale, R., & Tierney, E. (2012). Concept of death and perceptions of bereavement in adults with intellectual disabilities. Journal of Intellectual Disability Research, 56 (2), 191 – 203. </bibtext> </blist> <blist> <bibl id="bib11" idref="ref36" type="bt">11</bibl> <bibtext>Stancliffe, R. J., & Parmenter, T. R. (1999). The choice questionnaire: A scale to assess choices exercised by adults with intellectual disability. Journal of Intellectual & Developmental Disability, 24, 107 – 132. </bibtext> </blist> <blist> <bibl id="bib12" idref="ref24" type="bt">12</bibl> <bibtext>Stancliffe, R. J., Wiese, M. Y., Read, S., Jeltes, G., & Clayton, J. M. (2016). Knowing, planning for and fearing death: Do adults with intellectual disability and disability staff differ? Research in Developmental Disabilities, 49–50, 47 – 59. doi: 10.1016/j.ridd.2015.11.016 </bibtext> </blist> <blist> <bibl id="bib13" idref="ref2" type="bt">13</bibl> <bibtext>Stancliffe, R. J., Wilson, N. J., Bigby, C., Balandin, S., & Craig, D. (2014). Responsiveness to self ‐ report questions about loneliness: A comparison of mainstream and intellectual disability ‐ specific instruments. Journal of Intellectual Disability Research, 58 (5), 399 – 405. doi: 10.1111/jir.12024 </bibtext> </blist> <blist> <bibl id="bib14" idref="ref55" type="bt">14</bibl> <bibtext>Streiner, D., & Norman, G. (1995). Health measurement scales: A practical guide to their development and use. Oxford, UK : Oxford University Press. </bibtext> </blist> <blist> <bibl id="bib15" idref="ref19" type="bt">15</bibl> <bibtext>Todd, S. (2003). Death does not become us: Death and intellectual disability research. Journal of Gerontological Social Work, 38, 225 – 240. doi: 10.1300/J083v38n01_07 </bibtext> </blist> <blist> <bibl id="bib16" idref="ref14" type="bt">16</bibl> <bibtext>Todd, S. (2004). Death counts: The challenge of death and dying in learning disability services. Learning Disability Practice, 7 (10), 12 – 15. doi: 10.7748/ldp2004.12.7.10.12.c1551 </bibtext> </blist> <blist> <bibl id="bib17" idref="ref15" type="bt">17</bibl> <bibtext>Todd, S. (2013). ‘Being there’: The experiences of staff in dealing with matters of dying and death in services for people with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 26, 215 – 230. doi: 10.1111/jar.12024 </bibtext> </blist> <blist> <bibl id="bib18" idref="ref77" type="bt">18</bibl> <bibtext>Todd, S., Bernal, J., & Rachel Forrester ‐ Jones, R. (2013). Death, dying and intellectual disability research. Journal of Applied Research in Intellectual Disabilities, 25 (6), 571 – 583. doi: 10.1111/jar.12027 </bibtext> </blist> <blist> <bibl id="bib19" idref="ref17" type="bt">19</bibl> <bibtext>Tuffrey ‐ Wijne, I., Bernal, J., Butler, G., Hollins, S., & Curfs, L. (2007). Using nominal group technique to investigate the views of people with intellectual disabilities on end ‐ of ‐ life care provision. Journal of Advanced Nursing, 58, 80 – 89. </bibtext> </blist> <blist> <bibl id="bib20" idref="ref6" type="bt">20</bibl> <bibtext>Velez, P., & Ashworth, S. D. (2007). The impact of item readability on the endorsement of the midpoint response in surveys. Survey Research Methods, 1, 69 – 74. </bibtext> </blist> <blist> <bibl id="bib21" idref="ref31" type="bt">21</bibl> <bibtext>Wiese, M. Y. (2014). End ‐ of ‐ life care of people with intellectual disabilities in community living services. Unpublished PhD thesis, The University of Sydney, Sydney. </bibtext> </blist> <blist> <bibl id="bib22" idref="ref22" type="bt">22</bibl> <bibtext>Wiese, M. Y., Stancliffe, R. J., Clayton, J., Read, S., & Jeltes, G. (2014). End ‐ of ‐ life planning scale. Sydney : Centre for Disability Research and Policy, The University of Sydney. </bibtext> </blist> <blist> <bibl id="bib23" idref="ref16" type="bt">23</bibl> <bibtext>Wiese, M., Stancliffe, R. J., Read, S., Jeltes, G., & Clayton, J. (2015). Learning about dying, death and end ‐ of ‐ life planning: Current issues informing future actions. Journal of Intellectual & Developmental Disability, 40 (2), 230 – 235. doi: 10.3109/13668250.2014.998183 </bibtext> </blist> </ref> <p>Graph: Flow chart of participation and withdrawal by participants with intellectual disability by assessment instrument. *One participant withdrew during the EOLPS but returned to the FOS 3.0 ‐ intellectual disability, before also withdrawing from the FOS 3.0 ‐ intellectual disability after a few questions. Therefore, because of double counting this individual, the total number of participants with intellectual disability who withdrew is 9, not 10 as is suggested by adding the number of withdrawals in Figure </p> <aug> <p>By R. J. Stancliffe; M. Y. Wiese; S. Read; G. Jeltes and J. M. Clayton</p> </aug>
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  Data: <searchLink fieldCode="AR" term="%22Stancliffe%2C+R%2E+J%2E%22">Stancliffe, R. J.</searchLink> (ORCID <externalLink term="http://orcid.org/0000-0003-4265-7433">0000-0003-4265-7433</externalLink>)<br /><searchLink fieldCode="AR" term="%22Wiese%2C+M%2E+Y%2E%22">Wiese, M. Y.</searchLink><br /><searchLink fieldCode="AR" term="%22Read%2C+S%2E%22">Read, S.</searchLink><br /><searchLink fieldCode="AR" term="%22Jeltes%2C+G%2E%22">Jeltes, G.</searchLink><br /><searchLink fieldCode="AR" term="%22Clayton%2C+J%2E+M%2E%22">Clayton, J. M.</searchLink>
– Name: TitleSource
  Label: Source
  Group: Src
  Data: <searchLink fieldCode="SO" term="%22Journal+of+Applied+Research+in+Intellectual+Disabilities%22"><i>Journal of Applied Research in Intellectual Disabilities</i></searchLink>. Nov 2017 30(6):1076-1088.
– Name: Avail
  Label: Availability
  Group: Avail
  Data: Wiley-Blackwell. 350 Main Street, Malden, MA 02148. Tel: 800-835-6770; Tel: 781-388-8598; Fax: 781-388-8232; e-mail: cs-journals@wiley.com; Web site: http://www.wiley.com/WileyCDA
– Name: PeerReviewed
  Label: Peer Reviewed
  Group: SrcInfo
  Data: Y
– Name: Pages
  Label: Page Count
  Group: Src
  Data: 13
– Name: DatePubCY
  Label: Publication Date
  Group: Date
  Data: 2017
– Name: TypeDocument
  Label: Document Type
  Group: TypDoc
  Data: Journal Articles<br />Reports - Research
– Name: Subject
  Label: Descriptors
  Group: Su
  Data: <searchLink fieldCode="DE" term="%22Test+Construction%22">Test Construction</searchLink><br /><searchLink fieldCode="DE" term="%22Psychometrics%22">Psychometrics</searchLink><br /><searchLink fieldCode="DE" term="%22Decision+Making%22">Decision Making</searchLink><br /><searchLink fieldCode="DE" term="%22Adults%22">Adults</searchLink><br /><searchLink fieldCode="DE" term="%22Intellectual+Disability%22">Intellectual Disability</searchLink><br /><searchLink fieldCode="DE" term="%22Planning%22">Planning</searchLink><br /><searchLink fieldCode="DE" term="%22Death%22">Death</searchLink><br /><searchLink fieldCode="DE" term="%22Caregivers%22">Caregivers</searchLink><br /><searchLink fieldCode="DE" term="%22Test+Validity%22">Test Validity</searchLink><br /><searchLink fieldCode="DE" term="%22Test+Reliability%22">Test Reliability</searchLink><br /><searchLink fieldCode="DE" term="%22Correlation%22">Correlation</searchLink><br /><searchLink fieldCode="DE" term="%22Aging+%28Individuals%29%22">Aging (Individuals)</searchLink><br /><searchLink fieldCode="DE" term="%22Attitude+Measures%22">Attitude Measures</searchLink><br /><searchLink fieldCode="DE" term="%22Knowledge+Level%22">Knowledge Level</searchLink>
– Name: DOI
  Label: DOI
  Group: ID
  Data: 10.1111/jar.12358
– Name: ISSN
  Label: ISSN
  Group: ISSN
  Data: 1360-2322
– Name: Abstract
  Label: Abstract
  Group: Ab
  Data: Background: This paper examines the development and psychometric characteristics of three instruments about end of life, designed for use with adults with intellectual disability (ID). Respectively, the instruments assess understanding of the concept of death, end-of-life planning, and fear of death. Methods: Part 1: instruments were developed or adapted, and pilot tested with 11 adults with ID and 2 disability staff. Part 2: 39 adults with ID and 40 disability staff were assessed on all three instruments. Results: We evaluated comprehensibility, internal consistency, inter-rater reliability, subscale: total score correlations, missing data, and withdrawal. Psychometric findings were mostly good. Overall, 23% of participants with ID withdrew at some point. This outcome may have been as much due to assessment fatigue as to sensitive content. There were no adverse events. Conclusions: People with ID can reliably complete assessments about end-of-life. Generally, each instrument was found to be comprehensible, reliable and valid.
– Name: AbstractInfo
  Label: Abstractor
  Group: Ab
  Data: As Provided
– Name: DateEntry
  Label: Entry Date
  Group: Date
  Data: 2017
– Name: AN
  Label: Accession Number
  Group: ID
  Data: EJ1156948
PLink https://search.ebscohost.com/login.aspx?direct=true&site=eds-live&db=eric&AN=EJ1156948
RecordInfo BibRecord:
  BibEntity:
    Identifiers:
      – Type: doi
        Value: 10.1111/jar.12358
    Languages:
      – Text: English
    PhysicalDescription:
      Pagination:
        PageCount: 13
        StartPage: 1076
    Subjects:
      – SubjectFull: Test Construction
        Type: general
      – SubjectFull: Psychometrics
        Type: general
      – SubjectFull: Decision Making
        Type: general
      – SubjectFull: Adults
        Type: general
      – SubjectFull: Intellectual Disability
        Type: general
      – SubjectFull: Planning
        Type: general
      – SubjectFull: Death
        Type: general
      – SubjectFull: Caregivers
        Type: general
      – SubjectFull: Test Validity
        Type: general
      – SubjectFull: Test Reliability
        Type: general
      – SubjectFull: Correlation
        Type: general
      – SubjectFull: Aging (Individuals)
        Type: general
      – SubjectFull: Attitude Measures
        Type: general
      – SubjectFull: Knowledge Level
        Type: general
    Titles:
      – TitleFull: Assessing Knowledge and Attitudes about End of Life: Evaluation of Three Instruments Designed for Adults with Intellectual Disability
        Type: main
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            NameFull: Read, S.
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              Type: published
              Y: 2017
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            – Type: issn-print
              Value: 1360-2322
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              Value: 30
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            – TitleFull: Journal of Applied Research in Intellectual Disabilities
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