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Experience or perception: What healthcare providers need when using the Utrecht Symptom Diary—4 Dimensional:A mixed-methods study
No full textBackground:The Utrecht Symptom Diary—4 Dimensional (USD-4D), an adaptation of the Edmonton Symptom Assessment System, supports healthcare providers (HCPs) in identifying, monitoring, and exploring multidimensional symptoms and needs of patients in the palliative phase. For the USD-4D to be optimally implemented in clinical palliative care, it is essential to know and understand the needs of HCPs when using it.Objective:To identify and interpret the needs of HCPs when using the USD-4D in clinical palliative care, operationalized as perceived facilitators and barriers.Design:An explanatory mixed-methods study with a sequential design.Methods:Data were collected between October 2019 and September 2020. In phase I, quantitative data were collected through a survey targeting Dutch HCPs working in palliative care. Facilitators were identified as items answered positively by ⩾80% of participants, while barriers were identified as items answered negatively by ⩾20% of participants. In phase II, these identified facilitators and barriers were explored in depth through mixed composition focus groups. The Capability-Opportunity-Motivation-Behavior (COM-B) model was utilized to contextualize and interpret the perceived facilitators and barriers.Results:A total of 122 HCPs completed the survey, with 95% of the respondents being women with a mean age of 48 years and 72% being nurses. Additionally, 53% of the respondents had no prior experience with the USD-4D. In phase II, 21 HCPs participated in focus groups. 95% of the participants were women with a mean age of 49 years and 67% being nurses. HCPs pinpointed facilitators primarily related to the potential benefits of the USD-4D for daily patient care. Conversely, the identified barriers included issues related to HCPs’ behavior, knowledge gaps, uncertainty regarding their abilities and attitudes toward the USD-4D, and technical obstacles.Conclusion:Facilitators and barriers across all facets of the COM-B model were recognized, with a notable emphasis on motivational barriers. It should be acknowledged that facilitators and barriers can evolve throughout the implementation process, underscoring the importance of viewing implementation and integration as fluid and continuous endeavors. Facilitators and barriers are closely linked to HCPs’ reflective capacities, emphasizing the need for tailored intervention strategies that align with different stages of USD-4D implementation
My Journey: From Patient to Researcher with Lived Experience
No full textAs a person with multiple chronic illnesses, I, Truus Teunissen, have had to deal with the problems in all aspects of my life: at home, at work, social, and societal. Although I now see myself as a citizen living life to the fullest, it took a long time, and I still struggle, to free myself from the feeling of “being the disease.” After getting involved in several patient organizations and committees, I saw that there was still much to do about meaningful and structural patient involvement in research, policy, and care practice. My drive is about caring for other people with illnesses through action research. As a PhD candidate and later as scientific researcher, I developed together with other patients a set of criteria and values. This is used in order to discuss patient perspectives in committees or platforms and for appraisal or evaluation of project proposals in health research and in health care from a patient perspective, by patients (representatives). This set of criteria and values is still in use after 12 years throughout The Netherlands. My family, friends, and co-researchers joined me on my journey to become a researcher with lived experiences. In the current main societal discourse, there are many issues to fight for when it comes to meaningful patient involvement, to living a full life despite health problems, to inclusion and justice. I still work as a guest scientific researcher, combining scientific knowledge and experiential knowledge, since investigating and understanding these issues is of paramount importance for achieving progress
My Journey: From Patient to Researcher with Lived Experience
No full textAs a person with multiple chronic illnesses, I, Truus Teunissen, have had to deal with the problems in all aspects of my life: at home, at work, social, and societal. Although I now see myself as a citizen living life to the fullest, it took a long time, and I still struggle, to free myself from the feeling of “being the disease.” After getting involved in several patient organizations and committees, I saw that there was still much to do about meaningful and structural patient involvement in research, policy, and care practice. My drive is about caring for other people with illnesses through action research. As a PhD candidate and later as scientific researcher, I developed together with other patients a set of criteria and values. This is used in order to discuss patient perspectives in committees or platforms and for appraisal or evaluation of project proposals in health research and in health care from a patient perspective, by patients (representatives). This set of criteria and values is still in use after 12 years throughout The Netherlands. My family, friends, and co-researchers joined me on my journey to become a researcher with lived experiences. In the current main societal discourse, there are many issues to fight for when it comes to meaningful patient involvement, to living a full life despite health problems, to inclusion and justice. I still work as a guest scientific researcher, combining scientific knowledge and experiential knowledge, since investigating and understanding these issues is of paramount importance for achieving progress