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Q Methodology - Bruce McKeown, Dan Thomas, Dan B. Thomas - Google Books
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Human Subjectivity, 2, pp Determining the various perspectives and consensus within a classroom using Q Methodology. Physics Education Research Conference Proceedings, 1 , pp Journal of Research in Education, 15 1 , Further, to die free of pain was a priority for only two of the five opinion types, and in fact a weak dis-priority for one. On the other hand, to be able to self bathe and feed, to be able to control bowels, to die clean, and to die without having body exposed were variably among the top seven priorities of the five opinion types.
The importance of having pain free death has been documented in previous studies. A study on terminally ill men revealed heterogeneity in views about presence of others at the very end of life [ 10 ]. Wanting family present at the time of death may reflect family dependence rather than family caring.
Overall, to die in the hospital was the most extreme dis-priority for our respondents, whereas to die at home was a non-priority. However, there was clear heterogeneity, to die in the hospital was a dis-priority for three opinion types, to die at home was a dis-priority for one opinion type, and two opinion types were silent as to the preferred place of death. The preferred place of death appears to be, to some extent, role-dependent. For example, non-physician care providers were more likely than patients to agree with the importance of dying at home [ 8 ].
Preferring not to die at home may be related to lower medical coverage and symptoms control, a desire not to burden family resources, refusal to admit that a cure is not possible, and difficulty in taking care of the dead body. Nevertheless, the following were non-priorities, being able to communicate with others, having the doctor available to answer questions, and receiving medical information regularly. Our results are consistent with results in other cultures. On the other hand, strong religious beliefs may not necessarily result in greater acceptance of death; spiritual coping can be through seeking control through a partnership with a higher power, giving up control to a higher power, or seeking spiritual support through the love and care of a higher power [ 9 ].
The results of this study and our previous study on desired information disclosure in clinical informed consent [ 47 ] are not consistent with such hypothesis.
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Interestingly, governing codes on disclosure of terminal illness to patients and families in Islamic countries vary considerably [ 48 ]. Adequate information disclosure provides an opportunity to complete unfinished business and say goodbye to important people. However, discussing death fears with family, friends, or physician may only remind the dying person of the unwelcomed event without added benefit to a previous disclosure.
Seriously ill patients were less likely than recently bereaved family, physicians, and non-physician care providers to rate discussing personal fears as important [ 8 ]. Although not to know if one has a fatal illness was a dis-priority, making own medical decisions was a non-priority for our respondents. People value the right to not have their physical, emotional, and dispositional privacy invaded negative liberty ; however, the value of decisional privacy positive liberty is less certain [ 49 ].
Further, avoidance of shaping patients decisions framing by clinicians may be impossible, and it has been advocated that clinicians should aim to avoid restricting choice rather influencing choice [ 49 , 50 ]. Previous studies showed that patients and the general public want to be involved in end-of life decision making rather than making their own decisions shared decision making model.
Development of an optimal instrument for studying end-of-life care continues to be a work in progress [ 53 , 54 ]. On the other hand, QODD does not include methods for importance weighting [ 41 ].
Our instrument has built on previous instruments and included statements related to Islamic Middle eastern culture and is applicable to forced-ranking and Q-methodology. With independent rating, respondents tend to attribute maximum importance to a large number of priorities, [ 14 ] which is avoided by forced-ranking, where items are evaluated relative to each other.
Further, averaging analysis has a homogenization and depersonalizing effect, which is avoided by factor analysis and Q-methodology that has the advantage of quantifying minority groups. We hypothesized that there are latent constellations of end-of-life choices that may be masked by averaging analysis.
This study had a number of limitations. First, it was based on convenience sampling and performed at a single tertiary healthcare institution in a major metropolitan city. Further, because forced-ranking is mentally demanding, only educated and committed individuals were suitable for the study. Thus our results could be generalized only with caution even though the institution is a governmental referral center for the entire country.
Second, the study confronted rather healthy individuals with a hypothetical scenario. Responses to hypothetical scenarios may not accurately indicate what people would choose in real-life situations. However, such responses have enriched our understanding of end-of-life choices, [ 19 , 32 — 37 ] as they likely reflect internalized range of norms and general beliefs in the society.
Arguably, choices of terminally ill patients may be rather reactive, reflecting the desire of the immediate self rather than the planning, calculating self. Over a few months, half of the terminally ill patients who reported seriously considering euthanasia and physician-assisted suicide for unremitting pain changed their mind [ 21 ]. Third, Q-methodology is exploratory and not exhaustive in nature. Opinion types are defined as prototypical exemplars rather than as discrete categories; Q-methodology assumes neither discontinuous data nor clear cut-off points between categories.
Thus the five opinion types extracted in this study should be seen as impressionistic conclusions. Further, it is likely that there are opinion types other than those identified in the study. Moreover, the prevalence of the identified opinion types among the larger population requires large sample surveys and standard analytic methods.
Despite these limitations, our data support four main conclusions. This is the first study, to our knowledge to assess end-of-life priorities in such cultures; our findings need to be expanded and confirmed. The results also emphasize diversity in prioritizing end-of-life issues; one average opinion profile may not be useful as concerns can appear in varying combinations and hierarchy. Preference about dying and death.
Quality of dying and death. Exploring end of life priorities in Saudi males: usefulness of Q-methodology. BMC Palliative Care 14 Conclusions 1 Transcendence was the extreme end-of-life priority, and dying in the hospital was the extreme dis-priority. Instrument development and validation The study instrument Q-set was developed, validated, and piloted by the authors.
Instrument administration Each respondent was given the Q-sorting instructions, Q-set cards, a Q-sort grid, and a Q-sorting sheet. Sample size and sampling Sample size was based on convenience and practicality, consistent with Q-methodology exploratory nature. Analysis Data were verified by double entry and validity checks. Mean age was Age-mean SD , yr. Mean SD scores of the 47 statements are shown in Fig.
To facilitate interpretation of results, we considered that the cohort of respondents, on average, held the ten statements with the highest mean ranking scores 8. To facilitate interpretation of results, we considered that an issue was important to respondents belonging to a particular opinion type if its related statement received one of the seven highest priority or seven lowest dis-priority scores corresponding to the two extreme columns in the sorting sheet, bilaterally in the model Q-sort of the opinion type.
Issues related to the rest of the statements were considered non-priority. All of the five opinion types were highly transcendent. Table 3 Opinion types identified by by-person factor analysis.
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Compared to the other opinion types, Opinion type I had the highest mean age, the longest sorting time, and the lowest self-rated religiosity, general health, life quality, and life satisfaction. Table 4 Characteristics of respondents per opinion type. Transcendence Religious traditions often provide a framework for understanding death and dying as well as norms for end-of-life care. Life-quality vs. Life-quantity Arguably, sanctity of life is related not only to its intrinsic value but also to some of its qualities, such as self-consciousness, ability to establish relationship, and ability to derive pleasure [ 30 ].
Decision making Although not to know if one has a fatal illness was a dis-priority, making own medical decisions was a non-priority for our respondents. Value of Q-methodology in exploring end-of-life preferences Development of an optimal instrument for studying end-of-life care continues to be a work in progress [ 53 , 54 ]. Study limitations This study had a number of limitations. Quality end-of-life care: a global perspective.
BMC Palliat Care.
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