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Older migrant patients with cancer face many language- and culture-related barriers to patient participation during medical consultations. To bridge these barriers, an eHealth tool called
This study aims to systematically develop, implement, and conduct a pilot evaluation of an oncological module that can be integrated into the Health Communicator to stimulate patient participation among older Turkish-Dutch and Moroccan-Dutch patients with cancer.
The Spiral Technology Action Research model, which incorporates 5 cycles that engage key stakeholders in intervention development, was used as a framework. The
The
Older migrant patients with cancer, survivors, and health care professionals found the oncological module to be a useful tool and have shown intentions to incorporate it into future consultation sessions. Both QPLs and videos were evaluated positively, the latter indicating that the use of narratives to inform older, low-literate migrant patients with cancer about health-related topics in their mother tongue is a viable approach to increase the effectiveness of health care communication with this target group.
Migrant patients across the world are facing numerous adversities within the health care system. For instance, health care professionals communicate less adequately with migrant patients compared with nonmigrant patients [
The number of Dutch migrant patients with cancer is expected to triple within the next 20 years, mainly because of the aging of the first generation Turkish-Dutch and Moroccan-Dutch population [
In general, patient-targeted intervention strategies that have been found to enhance patient participation significantly include coaching, providing educational materials, and having patients offer their opinions to their health care professionals [
However, Fukui et al [
Given the lack of interventions tailored specifically to older Turkish-Dutch and Moroccan-Dutch migrant patients with cancer to combat the barriers they experience in communicating with their health care professionals [
Our goal of implementing this new oncological module is further supported by evidence pointing toward the fact that older adults and Turkish-Dutch patients are more inclined to use media than interpersonal sources to gather health information, ranging from the television to the internet [
The Spiral Technology Action Research (STAR) [
Overview of the phases, their aims, actions, and publications.
Phase | Aim | Actions | Publication |
Listen | Target group analysis |
Conduct a literature review to identify (older) ethnic minority cancer patients’ information and participation preferences and needs Conduct a qualitative study to identify unfulfilled instrumental and affective needs of older Turkish-Dutch and Moroccan-Dutch patients with cancer, and the barriers perceived by health care professionals (ie, general practitioners and oncology nurses) to fulfil patients’ needs |
Review [ Submitted; paper under review (Yilmaz et al, unpublished data, 2020) |
Plan | Methodology development |
Develop question prompt lists and pilot testing them among patients Developing narrative patient education videos and pilot testing them among both patients and health care professionals (ie, general practitioners and oncology nurses) |
Results shortly described in the Methods section of this paper |
Do | Development of the oncological module prototype |
Finalize the 6 question prompt lists and 5 narrative patient education videos by revising them based on feedback from patients and health care professionals (ie, general practitioners and oncology nurses) from the |
No publication |
Study | Pilot evaluation of the oncological module |
Conduct a qualitative study to pilot-evaluate the oncological module prototype among patients and health care professionals (ie, general practitioners and oncology nurses) |
Findings described in the Results section of this paper |
Act | Creating a dissemination plan |
Create and disseminate a stand-alone module: |
No publication |
To identify existing findings on the needs of older migrant patients with cancer, a systematic literature review was conducted. The results of the literature review revealed that most non-Western ethnic minority patients with cancer and survivors have a high preference and need for information and shared or active participation. However, no information was available regarding the preferences and needs of our target population, Moroccan-Dutch and Turkish-Dutch older patients with cancer [
Given the limited findings in the literature regarding the needs of older Turkish-Dutch and Moroccan-Dutch patients with cancer, further in-depth interviews were conducted to determine the topics that need to be addressed within the oncological module. A total of 19 interviews were carried out with Turkish-Dutch and Moroccan-Dutch patients with cancer and cancer survivors. Interviews were conducted by bilingual interviewers in patients’ first language (ie, Turkish, Moroccan Arabic, or Berber dialects). Participants were recruited by reaching out to prominent figures within Turkish and Moroccan communities that work in the health sector and via snowball sampling. The results revealed unmet instrumental needs concerning the treatment of cancer and the health care system and unmet affective needs concerning psychosocial support and affective doctor-patient communication. Acceptance of the Health Communicator
Following patient interviews, 2 focus groups with general practitioners (GPs) and oncology nurses were conducted. Health care professionals were asked to reflect on the findings of the patient interviews, share their own experiences, and indicate the type of information they would like to receive from their patients to better fulfill their unmet needs. Although health care professionals acknowledged the most unmet instrumental and affective needs of patients that emerged from the interviews, they appeared not to be aware of patients’ need for psychosocial support or misunderstandings surrounding clinical trial requests. Health care professionals also needed more information about patients’ instrumental needs and the role of family members in the treatment process (Yilmaz et al, unpublished data, 2020). Overall, the patient interviews and focus groups with GPs and oncology nurses provided valuable insights into the content creation phases.
On the basis of the results of the target group analysis, 2 types of content, namely QPLs and narrative patient education videos, were created for the oncological module. QPLs are essentially structured question lists that aim to make it easier for patients to ask questions to their providers during consultations [
On the basis of the emergent instrumental and affective needs of patients, 5 QPLs were developed. The content of the QPLs was not disease-specific (ie, not about breast cancer or other cancer types) but rather included topics relevant to general oncological care that addresses the issues that older migrant patients with cancer face during their illness, namely (1) patient rights, (2) lifestyle and access to health care services, (3) treatment, (4) psychosocial support, and (5) clinical trials. Each QPL consisted of 4 or 5 simple questions aimed at stimulating patients to ask more questions to their health care professionals and have a more active role during consultations (eg, “Can I discuss my problems in my mother tongue with someone sharing my culture?” and “Can I ask for a second opinion?”). In addition, to address health care professionals’ instrumental needs, a sixth QPL was developed, which enabled them to learn more about patients’ instrumental and decision-making preferences and health behaviors (eg, “Are you using any medication bought from another country?” and “Who do you want, next to your doctor, to help you make healthcare decisions for you?”). Additional illustrations representing each question were developed to assist patients with low literacy.
All QPLs and accompanying illustrations were pilot-tested during in-depth interviews conducted with 11 older migrant patients with cancer and survivors (8 Moroccan and 3 Turkish; mean age 61.50, SD 9.36 years). Participants were recruited by reaching out to prominent figures within Turkish and Moroccan communities that work in the health sector and via snowball sampling.
Interviews were conducted by bilingual interviewers in the patients’ first language (ie, Turkish, Moroccan Arabic, or Berber dialects). Patients evaluated each question and illustration for ease of understanding of the content and language (eg, “Do you understand this question?” and “Do you think this picture is a clear illustration of the question?”). Results showed that patients found the QPL questions easy to understand, whereas some illustrations were found to be too abstract. Patients had specific recommendations for word choices and requested increasing concreteness and familiarity of illustrations, such as adding headscarves to some of the female figures and removing abstract symbols. On the basis of their recommendations, revisions were made and incorporated in the
We created 5 scripts for each video. Similar to QPLs, the content of the videos addressed general oncological issues that older migrant patients with cancer typically face during their illness, namely (1) patient rights and access to health care services, (2) doctor-patient communication, (3a and 3b) psychosocial support, and (4) clinical trials. We created 2 separate scripts featuring a male and female patient as the main characters for the psychosocial support video. This was done to enhance identification with characters for both male and female patients. Each script was related to the experiences of an older migrant patient who survived cancer from the patients’ point of view. The scripts incorporated actual experiences and specific language used by patients during interviews in the target group analysis phase as much as possible. All scripts were prepared in Dutch for health care providers and in Turkish, Moroccan Arabic, and Berber dialects for patients.
The scripts were pilot-tested with 8 older migrant patients with cancer (Turkish, n=3; Moroccan, n=5; mean age 63.75, SD 6.39 years) during individual in-depth interviews. Participants were recruited by reaching out to prominent figures within Turkish and Moroccan communities that work in the health sector and via snowball sampling. Interviews were conducted by bilingual interviewers in patients’ first language (ie, Turkish, Moroccan Arabic, or Berber dialects). Patients evaluated each script on ease of understanding (“Can you understand everything said in the video/happening in the video easily?”), familiarity (“Does this story sound familiar to you?”
We also tested the scripts in 2 separate focus group meetings with GPs (n=6 [2 women and 4 men]; mean age 45.17, SD 11.89 years) and oncology nurses (n=5, all women; mean age 49.60, SD 12.16 years). The health care professionals evaluated the scripts on accuracy (“Is all the information provided in the script correct?”), the usefulness of the provided information (“How useful do you find the information in the script?”), and their willingness to share videos once they are available (“Would you share these videos with your patients in the future?”). The results showed that health care professionals found the scripts to be accurate and useful, and they expressed their intentions to use them in the future.
On the basis of the results of the pilot tests with patients and health care professionals, we created a prototype for the oncological module. The prototype included 6 QPLs tested in the previous phase. We used voice actors and added audio support to the QPLs in Turkish, Moroccan Arabic, and Berber (Tarafit dialect), enabling (illiterate) patients to listen to the QPLs in their mother tongue.
Similarly, feedback on the scripts was incorporated, and 5 short videos (1.5-3.5 min long) featuring Turkish-Dutch and Moroccan-Dutch actors were filmed. Once again, voice actors narrated these stories in Turkish, Moroccan Arabic, and Berber (Tarafit). Scripts were largely based on patients’ answers during the interviews in the target group analysis. The first video addressed patients’ instrumental needs about patient rights (eg, right to informed consent) and access to health care services (eg, dietitian, home care, psychological support). The second video included suggestions to improve GP-patient communication by encouraging patients to prepare before consultations, ask more questions, make use of interpreters, and inform the doctor about their affective needs. The third and fourth videos aimed to provide psychosocial support to patients. The videos acknowledged the negative emotions experienced by patients with cancer and tried to counter them by giving a positive but also realistic message of hope. Topics about self-care, such as the importance of good diet, social contacts, psychological and spiritual support, were incorporated into these videos. The final video aimed to clarify the misunderstandings surrounding clinical trial requests; the video emphasized that a request to join a clinical trial does not mean that the patient has no hope of treatment and that patients can take time to decide on joining these trials, can refuse to join without risking their relationship with their doctors, and can quit if they have accepted to join previously. Furthermore, information regarding the general aim of these trials was provided.
The oncological module was pilot-evaluated in practice among 27 Turkish-Dutch and Moroccan-Dutch older patients with cancer aged 50 years and older and cancer survivors (Turkish: n=15, 9 women, mean age 63.47, SD 2.59 years; Moroccan: n=12, mean age 63.33 years, SD 2.70 years) and their health care professionals (GPs and oncology nurses: n=12, mean age 53.50 years, SD 13.34 years; see
Background characteristics of patients.
Demographics | Turkish (n=15) | Moroccan (n=12) | Total (n=27) | |
Age (years), mean (SD) | 63.47 (2.59) | 63.33 (2.70) | 63.41 (9.55) | |
Years residing in the Netherlands, mean (SD) | 39.40 (3.21) | 34.09 (3.54) | 37.15 (12.19) | |
Dutch language proficiency, mean (SD) | 1.89 (0.30) | 2.21 (0.29) | 2.02 (1.08) | |
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Female | 9 (60) | 9 (75) | 18 (67) |
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Male | 6 (40) | 3 (25) | 9 (33) |
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No schooling | 4 (26) | 6 (50) | 10 (36) |
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Primary school in Turkey or Morocco | 7 (47) | 5 (40) | 12 (44) |
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Secondary school in Turkey or Morocco | 1 (7) | —a | 1 (4) |
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Primary school in the Netherlands | — | 1 (10) | 1 (4) |
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Secondary school in the Netherlands | 2 (13) | — | 2 (8) |
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Higher education in the Netherlands | 1 (7) | — | 1 (4) |
aNo participants belonging to the category.
Background characteristics of health care professionals.
Demographic | General practitioners (n=10) | Oncology nurses (n=2) | Total (n=12) | |
Age (years), mean (SD) | 57.50 (10.50) | 33.50 (2.12) | 53.50 (13.34) | |
Work experience in years, mean (SD) | 23.44 (10.37) | 6.00 (2.82) | 20.27 (11.67) | |
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Female | 5 (50) | 2 (100) | 7 (58) |
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Male | 5 (50) | —a | 5 (42) |
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1-2 | 1 (10) | — | 1 (8) |
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2-4 | 4 (40) | — | 4 (30) |
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5-10 | 5 (50) | 1 (50) | 6 (50) |
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≥10 | — | 1 (50) | 1 (8) |
aNo participants belonging to the category.
Before the beginning of the pilot testing with patients, all participating health care professionals received an hour-long individual training on how to use the oncological module. Patients evaluated the QPL content and use before their consultations in GP practices or hospitals by means of surveys that were verbally administered to patients in their mother tongue by bilingual trained interviewers. Interviewers presented patients with QPL themes in the oncological module and asked them to choose one or more QPLs that they would like to fill out. After choosing a theme (eg, patient rights), patients saw all available questions within that QPL (eg, “Can I record consultations?”) and selected the ones they wanted to discuss with their professionals during the consultation (
Following the QPL selection, patients and professionals consulted the same GP practice or hospital; 18 patients gave consent to have their consultations audio-taped. Patients who did not consent felt that the topics were too private and did not want anyone else to hear them, although their anonymity and confidentiality were guaranteed. After the consultations, patients completed a survey again, measuring their evaluation of the consultation.
After the consultations, the topics of all available narrative videos were briefly described to patients. Patients selected the videos they wanted to watch (
Breakdown of question prompt lists selected by the patients in the evaluation study. Percentages reflect the percentage of participants that selected that question prompt list. Among the 27 participants, 10 selected 1 and 17 selected 2 question prompt lists. QPLs: question prompt lists.
Videos selected by the patients. Percentages reflect the percentage of participants that selected that video. 33% of patients selected 1 video, 22% selected 2 videos, 4% selected 3 videos, 19% selected 4 videos, and 11% selected 5 videos, amounting to an average of 2.27 (SD 1.59) videos requested per patient. GP: general practitioner.
All survey items were measured using 5-point Likert scales (eg, 1=completely disagree, 5=completely agree; 1=very difficult, 5=very easy; and 1=very unsatisfied, 5=very satisfied).
After making their selection, patients assessed the ease of using the tool (both with and without assistance), ease of understanding QPL content and accompanying graphic images, and finally how convenient it was to choose QPLs before a consultation.
Patients’ general satisfaction with the consultation was measured with 1 item (ie, “Overall, how satisfied are you with your consultation?”). Patients’ perceptions of the informativeness and supportiveness of the health care professional were measured by 3 and 4 items, respectively, based on Street et al [
Patients’ perceived participation during the consultation was measured using 5 items from Street et al [
Patient participation was assessed with a self-developed codebook containing 2 measures: (1) relative talk for each person (ie, patient, health care professional, interpreter or companion) and (2) number and type of questions asked by patients, professionals, and interpreters or companion. In 11 of 18 consultations, an informal interpreter and/or companion was present; 8 consultations were held by nurses, 10 by GPs. Questions were divided according to the QPLs, except for clinical trials because this QPL could not be chosen because it was deemed irrelevant for GPs (ie, patient rights, treatment-related information, psychosocial support, lifestyle and access to health care services, patient information). In addition, a
During the phone interviews, patients rated how easy it was for them to access (“How easy was it for you to access the videos”) and understand the videos (“The video was easy to understand”) and the usefulness (“The video was useful to improve my understanding of the topic about…”) and informativeness (“The video was very informative concerning the topic about…”) of each video that they had seen. The level of identification with the main characters in the narrative videos was measured with 4 items (Cronbach α=.81); 2 items were based on Murphy et al [
After each consultation, health care professionals evaluated the participation of the patients during the consultation. To measure this, the same questions that patients responded to when reporting their participation were used. Specifically, these were the 5 items from the PICS (eg, “The patient asked me to explain the discussed topics in detail”; Cronbach α=.74) and the additional question about comparison of the participation level (ie, “The patient participated more than usual in this consultation”). During the final survey study, health care professionals also evaluated the QPLs and narrative videos on perceived usefulness, ease of sharing with patients, and their intentions to use in the future.
Correlations between variables were calculated by running bivariate correlations using Pearson
After the
Overall, patients perceived the questions in the QPLs as easy to understand (mean 4.30, SD 0.65) and useful (mean 3.96, SD 0.72). Graphic images accompanying the QPLs were perceived as easy to understand (mean 3.75, SD 1.14). Patients found the usefulness of the images in aiding the understanding of the questions as neutral (mean 3.23, SD 1.27). Overall, participants found it relatively easy to use the QPL function in the oncological module (mean 3.54, SD 1.07). They had low confidence, although still neutral, about their ability to use the tool easily without any assistance (mean 3.19, SD 1.44). There was a strong negative correlation between the ease of using the tool and patient age. It was harder for older patients to use the QPLs (
Health care professionals rated the QPLs as rather useful (mean 3.67, SD 1.07) and overall somewhat easy to use (mean 3.44, SD 0.96).
The mean consultation length was 14.09 min (SD 7.60; range 3.37-35.06 min). Professionals spoke, on average, most words (48.15%; range 166-2481), followed by patients (33.5%; range 130-2544), and interpreters or companions (18.35%; range 38-1672). The mean number of questions asked per consultation was 24.55 (SD 17.21; range 11-89). Professionals asked significantly more questions (mean 15.72, SD 9.36; range 3-43) than both patients (mean 4.56, SD 5.45; range 0-23; t17=6.61;
Overall, no significant relationship was found between the first QPL selection and the number of questions asked by patients during the consultation about that topic (patient rights:
Similarly, we tested the relationship between patients’ first QPL choice and the number of questions posed by health care professionals about that topic. The number of questions asked by the health care professionals in a given topic was marginally significantly predicted by the first QPL topic selected by the patients for patient rights (
Overall, patients reported being highly satisfied with their consultations (mean 4.31, SD 0.55). They perceived their providers as informative (mean 4.17, SD 0.57) and supportive (mean 4.34, SD 0.59). They also reported that using the module positively impacted consultations (mean 3.90, SD 0.55). Patients perceived themselves to be rather active during the consultations (mean 3.75, SD 0.84) and thought they were somewhat more active in comparison with previous consultations (mean 3.75, SD 0.79). Most (70%) of the participants reported that they would like to use the tool in the future (mean 3.85, SD 1.25). The age of the participants had a strong negative correlation with their wish to use the tool in the future (
Professionals’ evaluation of the patients’ participation revealed similar, although slightly lower scores. Professionals found patients to be slightly more active in asking questions and expressing themselves (mean 3.42, SD 0.70) and somewhat more active than their usual levels of participation (mean 3.61, SD 1.06). Both patients’ and providers’ evaluations were positively correlated for each of these measures (
Patients rated the videos as easy to understand (mean 4.30, SD 0.47), useful (mean 4.00, SD 0.62)
Professionals rated the videos as useful (mean 3.92, SD 1.08). They were neutral about the ease of sharing the videos with their patients (mean 3.25, SD 1.06) and showed some intentions to share them (mean 3.42, SD 1.08).
Overall, patients found the tool to be useful in improving their communication with their health care professionals (mean 4.27, SD 0.88). Health care professionals rated the usefulness of the oncological module less favorable than the patients (mean 3.42, SD 1.16).
This paper elaborates on the development of an oncological module aimed at increasing patient participation between older migrant patients with cancer and their health care professionals. Using the STAR model as our framework, the module was developed with continuous input from relevant community members, namely older migrant patients with cancer, oncology nurses, GPs, and researchers. This multifaceted contribution allowed us to develop a multilingual intervention that received positive evaluations from both migrant patients with cancer and professionals. Patients most often chose the QPL for patient rights. Both patients and health care professionals perceived the QPLs as somewhat easy to understand and useful. The correlation between the ease of using the tool and patient age was negative. Health care professionals asked significantly more questions than patients, whereas patients reported that using the module impacted the consultations positively and thought they were more active compared with previous consultations. Health care professionals echoed that patients were more active than usual. However, there were no significant relations between patients’ first choice of QPLs and the number of questions asked about that topic during consultations. Patients requested to see the patients’ rights video most often, and overall rated the videos as easy to understand, useful, and informative. Most of the patients reported that they like to use the tool in the future.
Aligned with the study by Walczak et al [
Results collected to examine patient participation during the consultation sessions revealed that professionals were more active than patients in terms of leading the conversation and asking questions. A recent study revealed that patients’ passive participation could be owing to the knowledge and language barriers they face [
Given that the results indicated that most questions raised were about treatment-related information, a possible solution to tackle patients’ passiveness would be through distributing information related to their cancer diagnosis in their native languages along with the QPLs before each consultation session, if they had a preference for this information. This approach can enhance patients’ knowledge of the subject, which, in turn, allows them to become more confident in expressing their views and opinions about the professionals’ suggestions and thus facilitate patient-centered communication, resulting in active patient participation. In addition, working with professional interpreters instead of nonprofessional interpreters during consultations is recommended, as most patient rights topics discussed during the consultations were related to patients’ need for a professional interpreter. This will lead to better translations and enhance patients’ understanding of the conversation [
The assessment of migrant patients with cancer of their QPL-incorporated consultation sessions was fairly positive, with patients expressing high satisfaction and concluding that the QPLs helped to impact their consultation sessions positively. Professionals’ overall evaluation of patients’ participation was less satisfactory, possibly because patients did ask fewer questions and contributed less to the conversation than they might have expected as a result of the intervention. On the other hand, for patients, the QPLs were able to help them identify topics of interest in a more direct manner, and, in turn, this helped professionals to formulate a clearer picture of their unmet instrumental and/or affective needs and prepare the consultation sessions based on this feedback. Although only marginally significant, the positive relationship between patients’ choice of the patient rights QPL and health care professionals’ questions about patient rights seems to lend some substantiation for this positive effect of QPLs, helping both parties to bring up the topic of patient rights more immediately during their consultation, thus increasing patient satisfaction with the consultation sessions [
Finally, both patients and professionals evaluated educational videos positively. Patients reported fairly high levels of identification with the characters in the narrative videos and expressed moderate intentions to watch similar videos in the future. High levels of identification with the character in the videos might likely have helped migrant patients with the ease of processing information presented because of sharing a common background with the characters [
Although older migrant patients with cancer showed some intentions to use the oncological module in the future, the results indicated that older patients had concerns and expressed little ease and confidence in their ability to use the tools on their own, especially regarding using the QPLs. Again, this shows that training patients remains a crucial component of such intervention to be effective, as this study did not sufficiently target the issue of adopting and adhering to the eHealth tool, which is especially important among older adults because of their low internet self-efficacy [
Furthermore, as there is a dearth of research assessing digital literacy skills among older migrant patients, future studies are needed to gain more insight into their (lack of) competence to use new technologies in everyday life [
Another limitation of this study is related to the developmental process of the prototype. The STAR model was designed fundamentally to promote healthy behaviors among young adolescents by encouraging them to actively participate in the e-tool developmental process [
We conclude that QPLs make the oncological module a beneficial tool to assist health care professionals in question-asking during consultations and to better fulfill the instrumental and affective needs of older migrant patients with cancer. In addition, the use of narratives to inform older and low-literate migrant patients with cancer about health-related topics in their mother tongue is a viable approach to increase the effectiveness of health care communication with this target group. However, given that older migrant patients are less able to use the QPLs on their own, health care professionals should also look into the feasibility of adding a training component to offer offline guidance in navigating the QPLs. Finally, the oncology module developed in this study is a promising tool for both patients and health care professionals.
An infographic depicting the difference between the existing Health Communicator tool and the new oncological module developed in this study.
general practitioner
perceived involvement in care scale
question prompt list
senior technology acceptance model
Spiral Technology Action Research
technology acceptance model
The authors would like to thank all the participating patients, health care providers, and research assistants who made this project possible. The authors would also like to thank the reviewers for their valuable contributions, which helped us to improve this paper.
None declared.