Towards an assessment instrument for suffering in patients with psychiatric conditions: assessing cognitive validity

Monica Verhofstadt*, Kenneth Chambaere, Roeslan Leontjevas, Gjalt-Jorn Ygram Peters

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

Abstract

Background
Unbearable suffering is a key criterion in legally granting patients' euthanasia requests in Belgium yet a generally accepted definition of unbearable suffering remains elusive. The ability to understand and assess unbearable suffering is essential, particularly in patients with psychiatric conditions, as the underlying causes of these conditions are not always apparent. To enable research into when and why suffering experiences incite patients with psychiatric conditions to request euthanasia, and to help explore preventive and curative perspectives, the development of an assessment instrument is needed.
Aims

To improve the cognitive validity of a large initial item pool used to assess the nature and extent of suffering in patients with psychiatric conditions.
Method

Cognitive validity was established via two rounds of cognitive interviews with patients with psychiatric conditions with (n = 9) and without (n = 5) euthanasia requests.
Results

During the first round of cognitive interviews, a variety of issues relating to content, form and language were reported and aspects that were missing were identified. During the second round, the items that had been amended were perceived as sufficiently easily to understand, sensitive to delicate nuances, comprehensive and easy to answer accurately. Neither research topic nor method were perceived as emotionally strenuous, but instead as positive, relevant, comforting and valuable.
Conclusions

This research resulted in an item pool that covers the concept of suffering more adequately and comprehensively. Further research endeavours should examine potential differences in suffering experiences over time and in patients with psychiatric conditions with and without euthanasia requests. The appreciation patients demonstrated regarding their ability to speak extensively and openly about their suffering and wish to die further supports the need to allow patients to speak freely and honestly during consultations.
Declaration of interests

None.
Original languageEnglish
Article numbere35
JournalBjpsych open
Volume5
Issue number3
DOIs
Publication statusPublished - 2019

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Psychiatry
Euthanasia
Psychological Stress
Aptitude
Research
Interviews
Belgium
Language
Referral and Consultation

Cite this

@article{8dafa8d6335746058c2827008f140bff,
title = "Towards an assessment instrument for suffering in patients with psychiatric conditions: assessing cognitive validity",
abstract = "BackgroundUnbearable suffering is a key criterion in legally granting patients' euthanasia requests in Belgium yet a generally accepted definition of unbearable suffering remains elusive. The ability to understand and assess unbearable suffering is essential, particularly in patients with psychiatric conditions, as the underlying causes of these conditions are not always apparent. To enable research into when and why suffering experiences incite patients with psychiatric conditions to request euthanasia, and to help explore preventive and curative perspectives, the development of an assessment instrument is needed.AimsTo improve the cognitive validity of a large initial item pool used to assess the nature and extent of suffering in patients with psychiatric conditions.MethodCognitive validity was established via two rounds of cognitive interviews with patients with psychiatric conditions with (n = 9) and without (n = 5) euthanasia requests.ResultsDuring the first round of cognitive interviews, a variety of issues relating to content, form and language were reported and aspects that were missing were identified. During the second round, the items that had been amended were perceived as sufficiently easily to understand, sensitive to delicate nuances, comprehensive and easy to answer accurately. Neither research topic nor method were perceived as emotionally strenuous, but instead as positive, relevant, comforting and valuable.ConclusionsThis research resulted in an item pool that covers the concept of suffering more adequately and comprehensively. Further research endeavours should examine potential differences in suffering experiences over time and in patients with psychiatric conditions with and without euthanasia requests. The appreciation patients demonstrated regarding their ability to speak extensively and openly about their suffering and wish to die further supports the need to allow patients to speak freely and honestly during consultations.Declaration of interestsNone.",
author = "Monica Verhofstadt and Kenneth Chambaere and Roeslan Leontjevas and Peters, {Gjalt-Jorn Ygram}",
year = "2019",
doi = "10.1192/bjo.2019.25",
language = "English",
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Towards an assessment instrument for suffering in patients with psychiatric conditions : assessing cognitive validity. / Verhofstadt, Monica; Chambaere, Kenneth; Leontjevas, Roeslan; Peters, Gjalt-Jorn Ygram.

In: Bjpsych open, Vol. 5, No. 3, e35, 2019.

Research output: Contribution to journalArticleAcademicpeer-review

TY - JOUR

T1 - Towards an assessment instrument for suffering in patients with psychiatric conditions

T2 - assessing cognitive validity

AU - Verhofstadt, Monica

AU - Chambaere, Kenneth

AU - Leontjevas, Roeslan

AU - Peters, Gjalt-Jorn Ygram

PY - 2019

Y1 - 2019

N2 - BackgroundUnbearable suffering is a key criterion in legally granting patients' euthanasia requests in Belgium yet a generally accepted definition of unbearable suffering remains elusive. The ability to understand and assess unbearable suffering is essential, particularly in patients with psychiatric conditions, as the underlying causes of these conditions are not always apparent. To enable research into when and why suffering experiences incite patients with psychiatric conditions to request euthanasia, and to help explore preventive and curative perspectives, the development of an assessment instrument is needed.AimsTo improve the cognitive validity of a large initial item pool used to assess the nature and extent of suffering in patients with psychiatric conditions.MethodCognitive validity was established via two rounds of cognitive interviews with patients with psychiatric conditions with (n = 9) and without (n = 5) euthanasia requests.ResultsDuring the first round of cognitive interviews, a variety of issues relating to content, form and language were reported and aspects that were missing were identified. During the second round, the items that had been amended were perceived as sufficiently easily to understand, sensitive to delicate nuances, comprehensive and easy to answer accurately. Neither research topic nor method were perceived as emotionally strenuous, but instead as positive, relevant, comforting and valuable.ConclusionsThis research resulted in an item pool that covers the concept of suffering more adequately and comprehensively. Further research endeavours should examine potential differences in suffering experiences over time and in patients with psychiatric conditions with and without euthanasia requests. The appreciation patients demonstrated regarding their ability to speak extensively and openly about their suffering and wish to die further supports the need to allow patients to speak freely and honestly during consultations.Declaration of interestsNone.

AB - BackgroundUnbearable suffering is a key criterion in legally granting patients' euthanasia requests in Belgium yet a generally accepted definition of unbearable suffering remains elusive. The ability to understand and assess unbearable suffering is essential, particularly in patients with psychiatric conditions, as the underlying causes of these conditions are not always apparent. To enable research into when and why suffering experiences incite patients with psychiatric conditions to request euthanasia, and to help explore preventive and curative perspectives, the development of an assessment instrument is needed.AimsTo improve the cognitive validity of a large initial item pool used to assess the nature and extent of suffering in patients with psychiatric conditions.MethodCognitive validity was established via two rounds of cognitive interviews with patients with psychiatric conditions with (n = 9) and without (n = 5) euthanasia requests.ResultsDuring the first round of cognitive interviews, a variety of issues relating to content, form and language were reported and aspects that were missing were identified. During the second round, the items that had been amended were perceived as sufficiently easily to understand, sensitive to delicate nuances, comprehensive and easy to answer accurately. Neither research topic nor method were perceived as emotionally strenuous, but instead as positive, relevant, comforting and valuable.ConclusionsThis research resulted in an item pool that covers the concept of suffering more adequately and comprehensively. Further research endeavours should examine potential differences in suffering experiences over time and in patients with psychiatric conditions with and without euthanasia requests. The appreciation patients demonstrated regarding their ability to speak extensively and openly about their suffering and wish to die further supports the need to allow patients to speak freely and honestly during consultations.Declaration of interestsNone.

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