Study on palliative care
Single Wave Study
General Information
Title
Study on palliative care
Project Number
383
Abstract
Research among citizens about their knowledge and views on palliative care.
Longitudinal Type
Single Wave Study
Begin date
05-02-2024
End date
27-02-2024
Topics
Researcher
Charlotte Veenvliet (Dutch Institute of Palliative Care (Stichting PZNL))
Publisher
Centerdata
Copyright
© 2025 Centerdata
DOI
https://doi.org/10.57990/w16x-ty78
Funding Organization
ODISSEI,
OCW (Domeinplan SSH),
NPPZII (Dutch Institute of Palliative Care (Stichting PZNL))
Datasets and documentation
View Documentation
Codebook in English
Codebook in Dutch
Data Files
English SPSS file
English STATA file
English CSV file
Variables
| Variable name | Variable Label |
|---|---|
| nomem_encr | Number of the household member encrypted |
| xw24a_m | Year and month of the field work period |
| xw24a001 | How would you describe your health, generally speaking? |
| xw24a002 | Are you affected by one or more of the following conditions? You can give more than one answer. : Asthma |
| xw24a003 | Are you affected by one or more of the following conditions? You can give more than one answer. : COPD |
| xw24a004 | Are you affected by one or more of the following conditions? You can give more than one answer. : Rheumatism / arthrosis |
| xw24a005 | Are you affected by one or more of the following conditions? You can give more than one answer. : Diabetes / diabetes mellitus |
| xw24a006 | Are you affected by one or more of the following conditions? You can give more than one answer. : (Effects of) a stroke |
| xw24a007 | Are you affected by one or more of the following conditions? You can give more than one answer. : Heart condition |
| xw24a008 | Are you affected by one or more of the following conditions? You can give more than one answer. : Depression |
| xw24a009 | Are you affected by one or more of the following conditions? You can give more than one answer. : Dementia |
| xw24a010 | Are you affected by one or more of the following conditions? You can give more than one answer. : Multiple sclerosis (MS) |
| xw24a011 | Are you affected by one or more of the following conditions? You can give more than one answer. : Amyotrophic Lateral Sclerosis (ALS) |
| xw24a012 | Are you affected by one or more of the following conditions? You can give more than one answer. : Cancer |
| xw24a013 | Are you affected by one or more of the following conditions? You can give more than one answer. : Other, specifically: |
| xw24a014 | Are you affected by one or more of the following conditions? You can give more than one answer. : None of these conditions |
| xw24a015 | How often have you had contact with your family physician in the past 12 months (by telephone, home visit or visit to the physician’s office)? You may provide an estimate. |
| xw24a016 | How often have you had contact with a hospital-based physician or care provider in the past 12 months (by telephone or in the hospital)? You may provide an estimate. |
| xw24a017 | Are you familiar with the terms below and do you know what they mean? Palliative care |
| xw24a018 | Are you familiar with the terms below and do you know what they mean? Terminal care |
| xw24a019 | Please indicate for the following statements whether they are true or not. Palliative care is only for people who have just a few weeks left to live. |
| xw24a020 | Please indicate for the following statements whether they are true or not. Palliative care is only for people who have cancer. |
| xw24a021 | Please indicate for the following statements whether they are true or not. Only people staying in a hospice receive palliative care. |
| xw24a022 | Please indicate for the following statements whether they are true or not. Palliative care can also be given to people receiving treatment aimed at prolonging life. |
| xw24a023 | Palliative care is […] What comes to mind, when you think about this type of care? You can choose more than one answer. : Caring and nursing |
| xw24a024 | Palliative care is […] What comes to mind, when you think about this type of care? You can choose more than one answer. : Ensuring that a person suffers as little as possible in the process of dying |
| xw24a025 | Palliative care is […] What comes to mind, when you think about this type of care? You can choose more than one answer. : Treating symptoms such as pain and shortness of breath |
| xw24a026 | Palliative care is […] What comes to mind, when you think about this type of care? You can choose more than one answer. : Support in taking leave of life and taking leave of others |
| xw24a027 | Palliative care is […] What comes to mind, when you think about this type of care? You can choose more than one answer. : Keeping vigil |
| xw24a028 | Palliative care is […] What comes to mind, when you think about this type of care? You can choose more than one answer. : Supporting loved ones (e.g. family) in the care and mourning process |
| xw24a029 | Palliative care is […] What comes to mind, when you think about this type of care? You can choose more than one answer. : Attention for psychological matters (e.g. anxiety and gloominess) |
| xw24a030 | Palliative care is […] What comes to mind, when you think about this type of care? You can choose more than one answer. : Attention for social matters (e.g. loneliness, relations, problems at work, informal care, financial issues) |
| xw24a031 | Palliative care is […] What comes to mind, when you think about this type of care? You can choose more than one answer. : Attention for existential questions, meaning of life and spirituality (e.g. [...]) |
| xw24a032 | Palliative care is […] What comes to mind, when you think about this type of care? You can choose more than one answer. : Palliative sedation (reducing consciousness through (sleep) medicine) |
| xw24a033 | Palliative care is […] What comes to mind, when you think about this type of care? You can choose more than one answer. : Euthanasia (physician-assisted dying) |
| xw24a034 | Palliative care is […] What comes to mind, when you think about this type of care? You can choose more than one answer. : Other, specifically: |
| xw24a035 | Palliative care is […] What comes to mind, when you think about this type of care? You can choose more than one answer. : None of the above |
| xw24a036 | Have you ever been exposed to palliative care in your environment, for instance for one of your loved ones such as family or friends? |
| xw24a037 | Who will be able to take medical decisions on my behalf when I am no longer able to do so. : Haven’t thought about it |
| xw24a038 | Who will be able to take medical decisions on my behalf when I am no longer able to do so. : Have thought about it |
| xw24a039 | Who will be able to take medical decisions on my behalf when I am no longer able to do so. : Have talked about it with a physician or other care provider |
| xw24a040 | Who will be able to take medical decisions on my behalf when I am no longer able to do so. : Have talked about it with a loved one (e.g. family) |
| xw24a041 | Who will be able to take medical decisions on my behalf when I am no longer able to do so. : Recorded it in writing |
| xw24a042 | Which treatments I would and which I would not want to have under certain circumstances. : Haven’t thought about it |
| xw24a043 | Which treatments I would and which I would not want to have under certain circumstances. : Have thought about it |
| xw24a044 | Which treatments I would and which I would not want to have under certain circumstances. : Have talked about it with a physician or other care provider |
| xw24a045 | Which treatments I would and which I would not want to have under certain circumstances. : Have talked about it with a loved one (e.g. family) |
| xw24a046 | Which treatments I would and which I would not want to have under certain circumstances. : Recorded it in writing |
| xw24a047 | Whether I do or do not wish to be reanimated. : Haven’t thought about it |
| xw24a048 | Whether I do or do not wish to be reanimated. : Have thought about it |
| xw24a049 | Whether I do or do not wish to be reanimated. : Have talked about it with a physician or other care provider |
| xw24a050 | Whether I do or do not wish to be reanimated. : Have talked about it with a loved one (e.g. family) |
| xw24a051 | Whether I do or do not wish to be reanimated. : Recorded it in writing |
| xw24a052 | Whether I would want to have euthanasia performed [(i) Physician-assisted dying] under certain circumstances. : Haven’t thought about it |
| xw24a053 | Whether I would want to have euthanasia performed [(i) Physician-assisted dying] under certain circumstances. : Have thought about it |
| xw24a054 | Whether I would want to have euthanasia performed [(i) Physician-assisted dying] under certain circumstances. : Have talked about it with a physician or other care provider |
| xw24a055 | Whether I would want to have euthanasia performed [(i) Physician-assisted dying] under certain circumstances. : Have talked about it with a loved one (e.g. family) |
| xw24a056 | Whether I would want to have euthanasia performed [(i) Physician-assisted dying] under certain circumstances. : Recorded it in writing |
| xw24a057 | Whether I can/want to continue living at home. : Haven’t thought about it |
| xw24a058 | Whether I can/want to continue living at home. : Have thought about it |
| xw24a059 | Whether I can/want to continue living at home. : Have talked about it with a physician or other care provider |
| xw24a060 | Whether I can/want to continue living at home. : Have talked about it with a loved one (e.g. family) |
| xw24a061 | Whether I can/want to continue living at home. : Recorded it in writing |
| xw24a062 | Whether I would or would not want to be admitted to hospital. : Haven’t thought about it |
| xw24a063 | Whether I would or would not want to be admitted to hospital. : Have thought about it |
| xw24a064 | Whether I would or would not want to be admitted to hospital. : Have talked about it with a physician or other care provider |
| xw24a065 | Whether I would or would not want to be admitted to hospital. : Have talked about it with a loved one (e.g. family) |
| xw24a066 | Whether I would or would not want to be admitted to hospital. : Recorded it in writing |
| xw24a067 | Whether I would or would not want to move to a nursing home. : Haven’t thought about it |
| xw24a068 | Whether I would or would not want to move to a nursing home. : Have thought about it |
| xw24a069 | Whether I would or would not want to move to a nursing home. : Have talked about it with a physician or other care provider |
| xw24a070 | Whether I would or would not want to move to a nursing home. : Have talked about it with a loved one (e.g. family) |
| xw24a071 | Whether I would or would not want to move to a nursing home. : Recorded it in writing |
| xw24a072 | Have you discussed with (one of) your loved ones what his or her care wishes are for the end of his or her life? |
| xw24a073 | With who did you discuss his or her wishes? With my… You can choose more than one answer. : Partner |
| xw24a074 | With who did you discuss his or her wishes? With my… You can choose more than one answer. : Parent |
| xw24a075 | With who did you discuss his or her wishes? With my… You can choose more than one answer. : Grandparent |
| xw24a076 | With who did you discuss his or her wishes? With my… You can choose more than one answer. : (Grand)uncle/aunt |
| xw24a077 | With who did you discuss his or her wishes? With my… You can choose more than one answer. : Child or children |
| xw24a078 | With who did you discuss his or her wishes? With my… You can choose more than one answer. : Friend |
| xw24a079 | With who did you discuss his or her wishes? With my… You can choose more than one answer. : Neighbor |
| xw24a080 | With who did you discuss his or her wishes? With my… You can choose more than one answer. : Other, specifically: |
| xw24a081 | When thinking about the future, what would you prefer: |
| xw24a082 | How confident are you that...physicians will provide you with good care in the final phase of life? |
| xw24a083 | How confident are you that...physicians will respect your wishes regarding medical decisions at the end of your life? |
| xw24a084 | How confident are you that...your loved ones (e.g. family) will respect your wishes regarding medical decisions at the end of your life? |
| xw24a085 | Do you want to be part of the decision-making about your treatment in the final phase of life if you turn out to have an ailment from which you will not recover? |
| xw24a086 | Do you intend to seek more information about care in the final phase of life/palliative care, in the coming six months? |
| xw24a087 | Do you intend to discuss your care wishes for the final phase of life with your loved ones (e.g. family or friends) in the coming six months? |
| xw24a088 | Do you intend to discuss your care wishes for the final phase of life with your physician or physicians in the coming six months? |
| xw24a089 | Do you intend to record your care wishes for the final phase of life in the coming six months? |
| xw24a090 | Do you intend to search for information in the coming six months, or to talk to your physician and/or loved ones, about support in the final phase of life? : No |
| xw24a091 | Do you intend to search for information in the coming six months, or to talk to your physician and/or loved ones, about support in the final phase of life? : Yes, I want to search for information about support in the final phase of life. |
| xw24a092 | Do you intend to search for information in the coming six months, or to talk to your physician and/or loved ones, about support in the final phase of life? : Yes, I want to talk with my physician and/or loved ones about support [...]. |
| xw24a093 | Suppose you were to receive an invitation this week to an information meeting about (care in) the final phase of life. Would you attend? You can choose more than one answer. : Yes, the topic is important to me. |
| xw24a094 | Suppose you were to receive an invitation this week to an information meeting about (care in) the final phase of life. Would you attend? You can choose more than one answer. : Yes, the topic is important to a loved one (e.g. [...]). |
| xw24a095 | Suppose you were to receive an invitation this week to an information meeting about (care in) the final phase of life. Would you attend? You can choose more than one answer. : Yes, I want to know more about the final phase of life. |
| xw24a096 | Suppose you were to receive an invitation this week to an information meeting about (care in) the final phase of life. Would you attend? You can choose more than one answer. : Yes, I think about the final phase of life. |
| xw24a097 | Suppose you were to receive an invitation this week to an information meeting about (care in) the final phase of life. Would you attend? You can choose more than one answer. : No, I wouldn’t attend because I’m not interested. |
| xw24a098 | Suppose you were to receive an invitation this week to an information meeting about (care in) the final phase of life. Would you attend? You can choose more than one answer. : No, I wouldn’t attend for other reasons, namely: |
| xw24a099 | Do you think that you will visit an information meeting about care in the final phase of life, somewhere in the future? |
| xw24a100 | Every person will die one day. Precisely where it will happen is usually uncertain. If you were able to make a choice in this respect, where would you most like to die? |
| xw24a101 | How would you describe your quality of life, generally speaking? |
| xw24a102 | Please choose the description that best reflects your health today: Mobility (walking) |
| xw24a103 | Please choose the description that best reflects your health today: Self-care (washing or dressing) |
| xw24a104 | Please choose the description that best reflects your health today: Daily activities (e.g. work, study, housekeeping, family and leisure time activities) |
| xw24a105 | Please choose the description that best reflects your health today: Pain/discomfort |
| xw24a106 | Please choose the description that best reflects your health today: Anxiety/gloominess |
| xw24a107 | To what extent have you been worried about the following topics, in the past months? Physical complaints, such as pain or shortness of breath |
| xw24a108 | To what extent have you been worried about the following topics, in the past months? That you are mentally not or no longer able to make decisions |
| xw24a109 | To what extent have you been worried about the following topics, in the past months? That you cannot accept things the way they are |
| xw24a110 | To what extent have you been worried about the following topics, in the past months? That you are not or no longer able to independently care for yourself physically |
| xw24a111 | To what extent have you been worried about the following topics, in the past months? That you are or are becoming a burden to others |
| xw24a112 | To what extent have you been worried about the following topics, in the past months? That you are losing or have lost control over your life |
| xw24a113 | To what extent have you been worried about the following topics, in the past months? That you are not treated with understanding |
| xw24a114 | To what extent have you been worried about the following topics, in the past months? That physicians do not take your wishes sufficiently into account |
| xw24a115 | To what extent have you been worried about the following topics, in the past months? That you are or are becoming lonely |
| xw24a116 | To what extent have you been worried about the following topics, in the past months? About death |
| xw24a117 | To what extent have you been worried about the following topics, in the past months? About your loved ones (for instance on account of their health problems or financial issues) |
| xw24a118 | Have you felt worried about any other topic, in the past months? |
| xw24a119 | How worried have you been about [v31_ja_namelijk], in the past months? |
| xw24a120 | Do you think you have a clear picture of the kinds of health issues that you might encounter at a later point in life? |
| xw24a121 | How often does someone help you read the letters or brochures sent by your family physician, the hospital or other care institutes? |
| xw24a122 | How sure are you of your ability to correctly complete medical forms? |
| xw24a123 | How often do you find it difficult to learn more about your health, because you have trouble understanding the written information? |
| xw24a124 | How important is faith or life philosophy in your life? |
| xw24a125 | Was it difficult to answer the questions? |
| xw24a126 | Were the questions sufficiently clear? |
| xw24a127 | Did the questionnaire get you thinking about things? |
| xw24a128 | Was it an interesting subject? |
| xw24a129 | Did you enjoy answering the questions? |
| xw24a130 | Starting date questionnaire |
| xw24a131 | Starting time questionnaire |
| xw24a132 | End date questionnaire |
| xw24a133 | End time questionnaire |
| xw24a134 | Duration in seconds |
Response Information
Response Overview
Selected number of household members: 1,713 (100.0%)Non-response: 413 (24.1%)
Response: 1,300 (75.9%)
Complete: 1,290 (75.3%)
Incomplete: 10 (0.6%)
Collection Events
Period
05-02-2024 to 27-02-2024
Sample
A random sample of panel members aged 16 years or older.
Collection Mode
Internet Survey
Fieldwork Note
A reminder was sent twice to non-respondents.