19 research outputs found
Feeling Seen, Being Heard:Perspectives of Patients Suffering from Mental Illness on the Possibility of Physician-Assisted Death in the Netherlands
Physician-assisted death (PAD) for patients suffering from a mental illness is allowed in the Netherlands under certain conditions but is a very controversial topic, mainly discussed by ethicists and physicians. The voice of the patient is rarely included in the debate, so we know little about what their views on the topic are. We aim to understand the views of patients with mental illness and wish to die with regard to the possibility of PAD in the Netherlands. The data for this qualitative study were collected through 21 in-depth interviews with Dutch patients who have a wish for PAD as a result of suffering from a mental illness. We identified four themes in relation to the meaning of PAD for the patients suffering from mental illness and wish to die. These themes are (1) Autonomy and self-determination, (2) ending the suffering, (3) recognition, and (4) a dignified end-of-life. The option of PAD for patients suffering from mental illnesses was considered of great importance to the patients who have a wish to die. We highlight the importance of ‘recognition’ for the situation of the patient, as this could lead to new perspective. We argue that psychiatrists need to reflect on providing this recognition in earlier phases of treatment, taking seriously and discussing a wish for PAD in treatment is beneficial to patients. It provides space for the patient to discuss their wishes and could cause them not wanting to die anymore
The Role of Age, Education, and Digital Health Literacy in the Usability of Internet-Based Cognitive Behavioral Therapy for Chronic Pain:Mixed Methods Study
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215537.pdf (publisher's version ) (Open Access)BACKGROUND: Internet-based cognitive behavior therapy (iCBT) can be effective in mental and somatic health care. Research on the feasibility of internet interventions in clinical practice is, however, still scarce. Studies with a focus on the patient regarding usability of interventions and digital health literacy skills are especially lacking. OBJECTIVE: The goal of this study was to assess the usability of an iCBT for chronic pain, Master Your Pain, and the relationship between its usability outcomes and the factors age, educational level, and digital health literacy skills. The aims were to determine what changes were needed in the program for sufficient usability and which individual characteristics were related to the usability of the program. METHODS: Patients were recruited from two mental health care practices. A mixed methods approach was used in this study. A qualitative observational study comprising performance tasks in the iCBT program was used to test usability. A quantitative questionnaire was used to measure possible related constructs. Usability was operationalized as the number of tasks that could be completed and the type and number of problems that occurred while doing so. Performance tasks were set up to measure 6 digital skills: (1) operating the computer and internet browser, (2) navigation and orientation, (3) using search strategies, (4) evaluating relevance of content, (5) adding personal content, and (6) protecting and respecting privacy. Participants were asked to think aloud while performing the tasks, and screen activities and webcam recordings were captured. The qualitative observational data was coded using inductive analysis by two independent researchers. Correlational analyses were performed to test how usability relates to sociodemographics and digital health literacy. RESULTS: A total of 32 patients participated, with a mean age of 49.9 years and 84% (27/32) being female. All performance tasks except one (fill in a diary registration) could be completed independently by more than 50% of the participants. On operational, navigation, and search levels, participants struggled most with logging in, logging out, and finding specific parts of the intervention. Half of the sample experienced problems evaluating the relevance and adding content to the program to some extent. Usability correlated moderately negatively with age and moderately positively with digital health literacy skills but not with educational level. CONCLUSIONS: The results provide insight into what is essential for proper usability regarding the design of an iCBT program considering variations in age, educational level, and digital health literacy. Furthermore, the results provide insight into what type of support is needed by patients to properly use the intervention. Tailoring support among the needs of certain age groups or skill levels could be beneficial and could range from no extra support (only online feedback, as intended) to practical support (an additional usability introduction session) to blended care (combined face-to-face sessions throughout the therapy)
Why item response theory should be used for longitudinal questionnaire data analysis in medical research
What About Us? Experiences of Relatives Regarding Physician-Assisted Death for Patients Suffering from Mental Illness: A Qualitative Study
Physician-assisted death (PAD) for patients suffering from mental illness is legally permitted in the Netherlands. Although patients’ relatives are not entrusted with a legal role, former research revealed that physicians take into account the patient’s social context and their well-being, in deciding whether or not to grant the request. However, these studies focussed on relatives’ experiences in the context of PAD concerning patients with somatic illness. To date, nothing is known on their experiences in the context of PAD concerning the mentally ill. We studied the experiences of relatives with regard to a PAD request by patients suffering from mental illness. The data for this study were collected through 12 interviews with relatives of patients who have or had a PAD request because of a mental illness. We show that relatives are ambivalent regarding the patient’s request for PAD and the following trajectory. Their ambivalence is characterised by their understanding of the wish to die and at the same time hoping that the patient would make another choice. Respondents’ experiences regarding the process of the PAD request varied, from positive (‘intimate’) to negative (‘extremely hard’). Some indicated that they wished to be more involved as they believe the road towards PAD should be a joint trajectory. To leave them out during such an important event is not only painful, but also harmful to the relative as it could potentially complicate their grieving process. Professional support during or after the PAD process was wanted by some, but not by all
Do Doctors Differentiate Between Suicide and Physician-Assisted Death? A Qualitative Study into the Views of Psychiatrists and General Practitioners
Physician-assisted death for patients suffering from psychiatric disorders is allowed in the Netherlands under certain circumstances. One of the central problems that arise with regard to this practice is the question of whether it is possible to distinguish between suicidality and a request for physician-assisted death. We set up this study to gain insight into how psychiatrists and general practitioners distinguish between suicidality and physician-assisted death. The data for this study were collected through qualitative interviews with 20 general practitioners and 17 psychiatrists in the Netherlands. From the interviews, we conclude that physicians distinguish three types of death wishes among patients suffering from psychiatric disorders: ‘impulsive suicidality,’ ‘chronic suicidality,’ and ‘rational death wishes.’ To discern between them they evaluate whether the death wish is seen as part of the psychopathology, whether it is consistent over time, and whether they consider it treatable. Some considered physician-assisted death an alternative to a ‘rational suicide,’ as this was perceived to be a more humane manner of death for the patient and their relatives. We argue that physician-assisted death can be justified also in some cases in which the death wish is part of the psychopathology, as the patient’s suffering can be unbearable and irremediable. Physician-assisted death in these cases may remain the only option left to relieve the suffering
Do Doctors Differentiate Between Suicide and Physician-Assisted Death? A Qualitative Study into the Views of Psychiatrists and General Practitioners
Physician-assisted death for patients suffering from psychiatric disorders is allowed in the Netherlands under certain circumstances. One of the central problems that arise with regard to this practice is the question of whether it is possible to distinguish between suicidality and a request for physician-assisted death. We set up this study to gain insight into how psychiatrists and general practitioners distinguish between suicidality and physician-assisted death. The data for this study were collected through qualitative interviews with 20 general practitioners and 17 psychiatrists in the Netherlands. From the interviews, we conclude that physicians distinguish three types of death wishes among patients suffering from psychiatric disorders: ‘impulsive suicidality,’ ‘chronic suicidality,’ and ‘rational death wishes.’ To discern between them they evaluate whether the death wish is seen as part of the psychopathology, whether it is consistent over time, and whether they consider it treatable. Some considered physician-assisted death an alternative to a ‘rational suicide,’ as this was perceived to be a more humane manner of death for the patient and their relatives. We argue that physician-assisted death can be justified also in some cases in which the death wish is part of the psychopathology, as the patient’s suffering can be unbearable and irremedia