Introduction
Advanced age phenomenon is the result of the natural course of time, leading to physiological, psychological, and social changes in the elderly population [
1]. According to the WHO regarding the elderly’s population by 2030 out of every six persons in the world one will be 60 years old or older [
2]. In Iran, according to a census performed in 2018, 10% of the entire population of the country is elderly, and it is predicted that by 2041, it would reach 20% and by 2050 reach 31.2% [
3].
With aging, the probability of developing chronic diseases increases significantly among the elderly population [
4,
5]. Suffering from diseases would confront the elderly person to limitations at the end of life [
6]. Studies show that the end-of-life care needs of the elderly patients do not receive the attention they deserve [
7,
8]. It is estimated that close to 30 million people worldwide have an immediate need to end-of-life care, with 69% of them being 60 years above [
9].
In Iran, attention to end-of-life issues and problems can be enhanced through an approach called palliative care [
10]. The study by Fereidouni et al. in Iran indicated that in order to support patients, care providers and families of patients, the place where palliative care is provided for patients at the end-of-life should be compatible with their wishes and preferences [
11]. Furthermore, elderly patients at the end-of-life should share their preferences with others around them, or choose a person as a proxy decision-maker [
12]. Accordingly, studies suggest that the elderlies who can make decisions should plan for their preferences for end-of-life care [
10,
13].
These measures are generally known as advanced care planning (ACP), with the aim of helping patients who lack decision-making capacity at the end-of-life about future care [
14] and it is considered as an essential step for achieving “a good death” [
15,
16]. ACP is defined as the process of making end-of-life treatment preferences, communicating goals of care, ordering life-sustaining treatments, and completing advance directives (ADs) [
13].
In Iran, like other Muslim countries, palliative care planning faces various challenges. For some Muslims, ACP is a vague concept and rarely discussed [
17]. In one study found that Muslim people put off uncomfortable conversations about care planning until they become ill or suddenly become unable to express their wishes [
18]. Despite the interesting of Muslim community in learning and receiving the concept of ACP [
19], ACP in Iran, does not exist in a coherent way, but researchers and clinician have separately and limitedly investigated the dimensions of it, including palliative care [
10,
20] and hospice care [
15,
21], preferred place of care and preferred place of death [
11], have a kind of ADs as Vasiyyah [
22], and do not resuscitation [
23] in their practice and research [
24].
Considering that achieving ACP in the elderly requires older people’s awareness and acceptance evaluation, so far, numerous instruments have been developed for evaluating views as well as advanced care planning. The most important instruments include the Cultural values and beliefs scale designed in the United States [
25], The ethnicity and attitudes toward advance care directives questionnaires designed in the South Korea [
26], Asian American quality of life survey designed in China [
27], and Advance Care Planning Questionnaire (ACPQ) designed in Malaysia [
28]. ACPQ is one of the instruments for examining the awareness and acceptance of the patient for receiving end-of-life care. This instrument was designed by Lai et al. in Malaysia in 2016. The aim of this questionnaire was to assess awareness and acceptance of the elderly about advanced care planning [
28]. This instrument has been developed in Malaysia as a Muslim country, which is a shared feature with Iran. This, in turn, makes this instrument a means for better achieving its items [
29].
So far, in Iran attention to patients’ preferences for end-of-life care is in its early stages and extensive search across the literature suggests that the studies performed in the country on the knowledge and attitude to ACP at end of life are very limited and there is no standard instrument about its measurement in Iran. Thus, the present study was done to examine the psychometric properties of Persian version of ACPQ in the elderly referring to hospitals in Tehran.
Discussion
The present study was performed to investigate the psychometric properties of the Persian version of ACPQ. According to the results, the face validity was confirmed by the elderly individuals, and the content validity was confirmed by palliative care experts. Furthermore, the results obtained from the construct validity using EFA and CFA indicated that the utilized instrument has a suitable structure. The reliability of the instrument was calculated by internal consistency test (Cronbach alpha coefficient = 0.72–0.94), showing suitable reliability of the instrument. Also, test-retest stability was conducted, which showed the time stability of the instrument.
In the present study, the translation process was performed carefully until achieving a final Persian version. Investigation of the face validity of the instrument using the opinions of 10 eligible elderlies showed that the items were simple and clear, and only in item number 12, some brief changes were made. The content validity was also explored using the opinions of 10 experts in palliative care by calculating CVI. In examination of CVI, all items had a score above 0.79. The face and content validity were examined in the original Malaysian version by two physicians specialized in palliative care, two specialists of geriatric medicine, family medicine specialist, and one family medicine clinical postgraduate candidate. Thereafter, each item was investigated and the relevancy of each item was discussed. Some items were eliminated, some were rewritten, and some new items were added until the panel of experts recognized that ACPQ covers all important areas in ACP [
28]. In the study by Lim et al., the translation was performed as back-and-forth, and the English questionnaire was translated to Malaysian. Next, the face and content validity were confirmed by a specialist panel consisting of two first aid physicians, three pharmacists, and one pharmacist currently involved in the field of ACP in Malaysia [
47].
In the present study, in EFA, four domains including “feelings regarding advance care planning”, “justifications for advance care planning”, justifications for not having advance care planning: fate and religion”, and “justifications for not having advance care planning: avoid thinking about death” were extracted, which is similar to the original study [
28].
Various studies have examined feelings regarding ACP. According to studies, feeling regarding ACP can be unpleasant feeling or positive. In some studies, it has been mentioned that patients feel disturbed [
48,
49]. But some studies have also paid attention to the positive side of the feeling, such as the feeling of power [
50,
51] Or in Holden Caplan et al.‘s study, most patients felt comfortable talking to their doctor about ACP and EOL decisions and were satisfied with how their doctor talked about EOL. They also felt comfortable discussing their EOL wishes with their trusted physician [
52]. In the dimension of “justifications for advance care planning”, there was no change in the Persian version of the tool according to the Malaysian version [
53]. According to the results of this study, this dimension was not changed in the Malay version [
47].
In the field of justifications for not having advance care planning: fate and religion, studies have mentioned religiosity as an important factor in avoiding ACP. In Martina’s study, patients who believed that life is a sacred loan that must be protected often avoided discussions about limiting invasive interventions and saw the concept of ACP as conflicting with their beliefs [
54]. Despite the positive effects of religious beliefs, strong religious beliefs on people’s physical and mental health [
55], higher levels of religiosity, reliance on religious coping, conservative faith traditions, and belief in God’s control over lifespan and divine intervention have lower levels of ACP and extreme EOL care preferences [
56]. Also, in a study, religious participants indicated that the manner of death and self-medication should be consistent with their religious teachings and values. They often discussed their disease status and treatment plan during hospitalization and preferred comfort care or limited care near EOL because of their faith. However, the results of some studies show that health care providers rarely pay attention to their religious beliefs [
57].
In all dimensions, KMO varied between 0.68 and 0.89. This indicates that the size of samples has been sufficient in all dimensions. Bartlett’s test was also significant in all dimensions, suggesting that the correlation between the items has been sufficient for exploratory factor analysis. In line with this study, in the research by Lim et al., again KMO in all dimensions was above 0.6 and the factor loading values were also above 0.4. Furthermore, they reported suitable exploratory factor analysis for the ACPQ [
47]. We are not able to compare the study results with more studies since only one study has dealt with translation and psychometric properties determination of this study. Nevertheless, it seems that while extracting four factors similar to the original questionnaire and similar to Lim, the overall framework of the questionnaire has been preserved.
In this study, CFA showed that the three-factor model extracted from EFA has a good fit of the data (RMSEA: 0.04; NFI: 0.97 CFI: 0.99; IFI: 0.99; RFI: 0.96; AGFI: 0.87; GFI 0/90; standardized RMR: 0.02). The four-factor model well confirms the questionnaire. The original study performed in Malaysia had not performed confirmatory validity [
28]. However, similarly the study by Lim et al. has also confirmed the four-dimensional model of this instrument [
47]. Thus, considering the confirmation of the four dimensions of the model in the present study as well as the original study together with its confirmation in the study by Lim et al., it seems that the four-dimensional model is also suitable in Persian language.
In the present study, reliability measurement of the Persian version was confirmed using internal consistency (Cronbach’s alpha = 0.72–0.94) along with stability ICC = 0.85–0.96, indicating suitable reliability of the instrument. The reliability of the instrument in the Malaysian version was investigated and confirmed using test-retest method with Kohen Kappa coefficient and score (0.738–0.94) as well as Cronbach alpha coefficient (0.637–0.915) [
28]. Lim et al. in their study reported that the Cronbach alpha value for four areas ranged from 0.674 and 0.947. In the retest, second-order weighted kappa values for all domains were 0.340–0.674, except for two domains (justifications of not having ACP (fate and religion) and “justifications for not having ACP (avoidance of thinking about death), ranging from 0.20 to 0.46 [
47]. Therefore, the instrument enjoys sufficient internal consistency and stability for usage in clinical and research settings.
Strengths of the study
The low number of items in this instrument has contributed to short completion time, and yet this instrument can also be used for examining the factors associated with advanced care planning. This can be a credible source for investigation of personal preferences in receiving the most suitable treatment and care in terminal stages of life. This questionnaire has not been limited to any special disease or condition or stage of disease. Indeed, it can be employed in other chronic diseases and different stages of the disease as well as healthcare centers including hospitals, geriatric healthcare centers, or hospice.
Conclusion
ACPQ is a reliable and valid instrument for investigating the awareness and approval of advanced care planning among the elderlies of Iranian society. This can help policymakers to determine the preparation of the elderly for ACP, so that in a not very far future, we can witness development of palliative care and advanced care planning as one of its dimensions. Also, this instrument can be employed in clinical evaluation and for research purposes.
Limitations
As one of the limitations of this study, it has investigated only the views of the elderly, and conducting some further studies as well as an exploration of the factors associated with advanced care planning according to other patients with different age conditions, or the views of physicians, nurses, and other healthcare providers and its comparison with the present study can be important. Another limitation is that ultimately these results may not be generalizable to all diseases, and it is recommended to conduct similar studies on special chronic or life-threatening diseases. Meanwhile, most respondents consisted of women, which can influence the results. Considering the limitations of access to the elderly eligible to be included in this study at the time of sampling as well as the novel nature of the concept and their familiarization with the concept, the access to the subjects was heavily time-consuming.
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