About palliative care
Single Wave Study
General Information
Title
About palliative care
Project Number
271
Abstract
This questionnaire is about palliative care.
Longitudinal Type
Single Wave Study
Begin date
07-09-2020
End date
29-09-2020
Topics
Researcher
Annicka van der Plas (Netherlands Comprehensive Cancer Organisation (IKNL))
Publisher
Centerdata
Copyright
© 2022 Centerdata
DOI
https://doi.org/10.17026/dans-z8n-n7pe
Funding Organization
ODISSEI
Netherlands Comprehensive Cancer Organisation (IKNL)
OCW (Domeinplan SSH)
Netherlands Comprehensive Cancer Organisation (IKNL)
OCW (Domeinplan SSH)
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 |
| te20a_m | Year and month of the field work period |
| te20a001 | What is your health status, generally speaking? |
| te20a002 | Do you have one or more of the following conditions? Asthma / COPD |
| te20a003 | Do you have one or more of the following conditions? Rheumatism / arthritis |
| te20a004 | Do you have one or more of the following conditions? Diabetes mellitus |
| te20a005 | Do you have one or more of the following conditions? A stroke or the consequences of a stroke |
| te20a006 | Do you have one or more of the following conditions? Heart disease |
| te20a007 | Do you have one or more of the following conditions? Depression |
| te20a008 | Do you have one or more of the following conditions? Dementia |
| te20a009 | Do you have one or more of the following conditions? Multiple sclerosis (MS) / Amyotrophic lateral sclerosis (ALS) |
| te20a010 | Do you have one or more of the following conditions? Cancer |
| te20a011 | Do you have one or more of the following conditions? Other |
| te20a012 | Do you have one or more of the following conditions? None of these conditions |
| te20a013 | How many times did you have contact with your family doctor (by telephone, house call or appointment at his/her practice) in the past 12 months? |
| te20a014 | How many times did you have contact with a hospital specialist (by telephone or in the hospital) in the past 12 months? |
| te20a015 | Do you know the following terms and what they mean? Palliative care |
| te20a016 | Do you know the following terms and what they mean? Life-prolonging care |
| te20a017 | Do you know the following terms and what they mean? Terminal care |
| te20a018 | Do you know the following terms and what they mean? Curative care |
| te20a019 | Please indicate whether the following statements are true or untrue. Palliative care is only for people who have just a few weeks left to live. |
| te20a020 | Please indicate whether the following statements are true or untrue. Palliative care is only for people who have cancer. |
| te20a021 | Please indicate whether the following statements are true or untrue. Only people in hospices receive palliative care. |
| te20a022 | Please indicate whether the following statements are true or untrue. Palliative care can also be provided to people who are receiving life-prolonging treatment. |
| te20a023 | What associations do you have when think of this kind of care? Caring for and nursing someone |
| te20a024 | What associations do you have when think of this kind of care? Making sure that someone suffers as little as possible when they die |
| te20a025 | What associations do you have when think of this kind of care? Treating symptoms, like pain and shortness of breath |
| te20a026 | What associations do you have when think of this kind of care? End-of-life support and support with final farewells |
| te20a027 | What associations do you have when think of this kind of care? Sitting vigil |
| te20a028 | What associations do you have when think of this kind of care? Helping loved ones (such as family) provide care and the mourning process |
| te20a029 | What associations do you have when think of this kind of care? Attention for psychological issues |
| te20a030 | What associations do you have when think of this kind of care? Attention for social issues |
| te20a031 | What associations do you have when think of this kind of care? Attention for existential questions, purpose and spirituality (e.g. about the meaning of life) |
| te20a032 | What associations do you have when think of this kind of care? None of the above |
| te20a033 | Has anyone in your environment ever received palliative care, for example one of your loved ones (such as family)? |
| te20a034 | When you think about the future, what would you prefer? |
| te20a035 | Have you ever thought about and/or discussed the following topics? Whether or not I want to or will be able to continue living at home: I have not thought about it |
| te20a036 | Have you ever thought about and/or discussed the following topics? Whether or not I want to or will be able to continue living at home: I have thought about it |
| te20a037 | Have you ever thought about and/or discussed the following topics? Whether or not I want to or will be able to continue living at home: I have talked about it with a doctor or other care provider |
| te20a038 | Have you ever thought about and/or discussed the following topics? Whether or not I want to or will be able to continue living at home: I have talked about it with someone close to me (e.g. family) |
| te20a039 | Have you ever thought about and/or discussed the following topics? Whether or not I want to or will be able to continue living at home: I have recorded wishes in writing |
| te20a040 | Have you ever thought about and/or discussed the following topics? Whether or not I would want to go to the hospital: I have not thought about it |
| te20a041 | Have you ever thought about and/or discussed the following topics? Whether or not I would want to go to the hospital: I have thought about it |
| te20a042 | Have you ever thought about and/or discussed the following topics? Whether or not I would want to go to the hospital: I have talked about it with a doctor or other care provider |
| te20a043 | Have you ever thought about and/or discussed the following topics? Whether or not I would want to go to the hospital: I have talked about it with someone close to me (e.g. family) |
| te20a044 | Have you ever thought about and/or discussed the following topics? Whether or not I would want to go to the hospital: I have recorded wishes in writing |
| te20a045 | Have you ever thought about and/or discussed the following topics? Whether or not I would want to be admitted to a nursing home: I have not thought about it |
| te20a046 | Have you ever thought about and/or discussed the following topics? Whether or not I would want to be admitted to a nursing home: I have thought about it |
| te20a047 | Have you ever thought about and/or discussed the following topics? Whether or not I would want to be admitted to a nursing home: I have talked about it with a doctor or other care provider |
| te20a048 | Have you ever thought about and/or discussed the following topics? Whether or not I would want to be admitted to a nursing home: I have talked about it with someone close to me (e.g. family) |
| te20a049 | Have you ever thought about and/or discussed the following topics? Whether or not I would want to be admitted to a nursing home: I have recorded wishes in writing |
| te20a050 | Have you ever thought about and/or discussed the following topics? Whether or not I want to be reanimated: I have not thought about it |
| te20a051 | Have you ever thought about and/or discussed the following topics? Whether or not I want to be reanimated: I have thought about it |
| te20a052 | Have you ever thought about and/or discussed the following topics? Whether or not I want to be reanimated: I have talked about it with a doctor or other care provider |
| te20a053 | Have you ever thought about and/or discussed the following topics? Whether or not I want to be reanimated: I have talked about it with someone close to me (e.g. family) |
| te20a054 | Have you ever thought about and/or discussed the following topics? Whether or not I want to be reanimated: I have recorded wishes in writing |
| te20a055 | Have you ever thought about and/or discussed the following topics? Which treatments I would and would not want to receive under specific circumstances: I have not thought about it |
| te20a056 | Have you ever thought about and/or discussed the following topics? Which treatments I would and would not want to receive under specific circumstances: I have thought about it |
| te20a057 | Have you ever thought about and/or discussed the following topics? Which treatments I would and would not want to receive under specific circumstances: I have talked about it with a doctor or other care provider |
| te20a058 | Have you ever thought about and/or discussed the following topics? Which treatments I would and would not want to receive under specific circumstances: I have talked about it with someone close to me (e.g. family) |
| te20a059 | Have you ever thought about and/or discussed the following topics? Which treatments I would and would not want to receive under specific circumstances: I have recorded wishes in writing |
| te20a060 | Have you ever thought about and/or discussed the following topics? Whether I would want to receive euthanasia under specific circumstances: I have not thought about it |
| te20a061 | Have you ever thought about and/or discussed the following topics? Whether I would want to receive euthanasia under specific circumstances: I have thought about it |
| te20a062 | Have you ever thought about and/or discussed the following topics? Whether I would want to receive euthanasia under specific circumstances: I have talked about it with a doctor or other care provider |
| te20a063 | Have you ever thought about and/or discussed the following topics? Whether I would want to receive euthanasia under specific circumstances: I have talked about it with someone close to me (e.g. family) |
| te20a064 | Have you ever thought about and/or discussed the following topics? Whether I would want to receive euthanasia under specific circumstances: I have recorded wishes in writing |
| te20a065 | Have you ever thought about and/or discussed the following topics? Who would be allowed to take medical decisions on my behalf if I am incapable of doing so myself: I have not thought about it |
| te20a066 | Have you ever thought about and/or discussed the following topics? Who would be allowed to take medical decisions on my behalf if I am incapable of doing so myself: I have thought about it |
| te20a067 | Have you ever thought about and/or discussed the following topics? Who would be allowed to take medical decisions on my behalf if I am incapable of doing so myself: I have talked about it with a doctor or other care provider |
| te20a068 | Have you ever thought about and/or discussed the following topics? Who would be allowed to take medical decisions on my behalf if I am incapable of doing so myself: I have talked about it with someone close to me (e.g. family) |
| te20a069 | Have you ever thought about and/or discussed the following topics? Who would be allowed to take medical decisions on my behalf if I am incapable of doing so myself: I have recorded wishes in writing |
| te20a070 | How confident are you that doctors will provide you with good care in your last stage of life? |
| te20a071 | How confident are you that doctors will respect your wishes regarding medical decisions in your last stage of life? |
| te20a072 | How confident are you that your loved ones (such as family members) will respect your wishes regarding medical decisions in your last stage of life? |
| te20a073 | In the coming six months, do you intend to search for more information about end-of-life care? No |
| te20a074 | In the coming six months, do you intend to search for more information about end-of-life care? Maybe |
| te20a075 | In the coming six months, do you intend to search for more information about end-of-life care? Definitely |
| te20a076 | In the coming six months, do you intend to search for more information about end-of-life care? Maybe, about the following subjects: |
| te20a077 | In the coming six months, do you intend to search for more information about end-of-life care? Definitely, about the following subjects: |
| te20a078 | In the coming six months, do you intend to discuss your end-of-life care wishes with your loved ones (for example family members or friends)? No |
| te20a079 | In the coming six months, do you intend to discuss your end-of-life care wishes with your loved ones (for example family members or friends)? Maybe |
| te20a080 | In the coming six months, do you intend to discuss your end-of-life care wishes with your loved ones (for example family members or friends)? Definitely |
| te20a081 | In the coming six months, do you intend to discuss your end-of-life care wishes with your loved ones (for example family members or friends)? Maybe, about the following subjects: |
| te20a082 | In the coming six months, do you intend to discuss your end-of-life care wishes with your loved ones (for example family members or friends)? Definitely, about the following subjects: |
| te20a083 | In the coming six months, do you intend to discuss your end-of-life care wishes with your doctor or doctors? No |
| te20a084 | In the coming six months, do you intend to discuss your end-of-life care wishes with your doctor or doctors? Maybe |
| te20a085 | In the coming six months, do you intend to discuss your end-of-life care wishes with your doctor or doctors? Definitely |
| te20a086 | In the coming six months, do you intend to discuss your end-of-life care wishes with your doctor or doctors? Maybe, about the following subjects: |
| te20a087 | In the coming six months, do you intend to discuss your end-of-life care wishes with your doctor or doctors? Definitely, about the following subjects: |
| te20a088 | In the coming six months, do you intend to record any wishes with regard to end-of-life care? No |
| te20a089 | In the coming six months, do you intend to record any wishes with regard to end-of-life care? Maybe |
| te20a090 | In the coming six months, do you intend to record any wishes with regard to end-of-life care? Definitely |
| te20a091 | In the coming six months, do you intend to record any wishes with regard to end-of-life care? Maybe, about the following subjects: |
| te20a092 | In the coming six months, do you intend to record any wishes with regard to end-of-life care? Definitely, about the following subjects: |
| te20a093 | Has COVID-19 caused you to think about your own wishes regarding end-of-life care, or to think about them more than before? |
| te20a094 | Has COVID-19 made you change your mind about your own wishes regarding end-of-life care? |
| te20a095 | Since the COVID-19 pandemic spread, have you had one or more discussions with a care provider about your care wishes in the event that you are infected with COVID-19? Yes, I initiated the discussion |
| te20a096 | Since the COVID-19 pandemic spread, have you had one or more discussions with a care provider about your care wishes in the event that you are infected with COVID-19? Yes, my doctor initiated the discussion |
| te20a097 | Since the COVID-19 pandemic spread, have you had one or more discussions with a care provider about your care wishes in the event that you are infected with COVID-19? Yes, another doctor or care provider initiated the discussion |
| te20a098 | Since the COVID-19 pandemic spread, have you had one or more discussions with a care provider about your care wishes in the event that you are infected with COVID-19? No |
| te20a099 | Which subjects did you discuss? Admission to the hospital |
| te20a100 | Which subjects did you discuss? Admission to intensive care |
| te20a101 | Which subjects did you discuss? Treatment of symptoms |
| te20a102 | Which subjects did you discuss? Availability of care at home |
| te20a103 | Which subjects did you discuss? Other |
| te20a104 | Which subjects did you discuss? Other, namely: |
| te20a105 | Suppose you were to receive an invitation this week to an information meeting about (care in) the end-of-life phase. Would you attend this meeting? Yes, the subject is important to me |
| te20a106 | Suppose you were to receive an invitation this week to an information meeting about (care in) the end-of-life phase. Would you attend this meeting? Yes, the subject is important for someone close to me (e.g. my partner or a friend) |
| te20a107 | Suppose you were to receive an invitation this week to an information meeting about (care in) the end-of-life phase. Would you attend this meeting? Yes, I want to know more about the end-of-life phase |
| te20a108 | Suppose you were to receive an invitation this week to an information meeting about (care in) the end-of-life phase. Would you attend this meeting? Yes, I think about the end-of-life phase |
| te20a109 | Suppose you were to receive an invitation this week to an information meeting about (care in) the end-of-life phase. Would you attend this meeting? No, I would not attend because I am not interested |
| te20a110 | Suppose you were to receive an invitation this week to an information meeting about (care in) the end-of-life phase. Would you attend this meeting? No, I would not attend for other reasons |
| te20a111 | Suppose you were to receive an invitation this week to an information meeting about (care in) the end-of-life phase. Would you attend this meeting? No, I would not attend for other reasons, namely: |
| te20a112 | Do you think that you would attend an information meeting about end-of-life care in the future? |
| te20a113 | How interested would you be in hearing about the following subjects during an information meeting about end-of-life care? The possibilities for home care |
| te20a114 | How interested would you be in hearing about the following subjects during an information meeting about end-of-life care? Care in a hospice |
| te20a115 | How interested would you be in hearing about the following subjects during an information meeting about end-of-life care? Care in a nursing home |
| te20a116 | How interested would you be in hearing about the following subjects during an information meeting about end-of-life care? Symptom alleviation |
| te20a117 | How interested would you be in hearing about the following subjects during an information meeting about end-of-life care? Existential questions, purpose and spirituality (for example the meaning of life) |
| te20a118 | How interested would you be in hearing about the following subjects during an information meeting about end-of-life care? Support for informal caregivers |
| te20a119 | How interested would you be in hearing about the following subjects during an information meeting about end-of-life care? Euthanasia |
| te20a120 | How interested would you be in hearing about the following subjects during an information meeting about end-of-life care? Loss and mourning |
| te20a121 | How interested would you be in hearing about the following subjects during an information meeting about end-of-life care? The final hours before death |
| te20a122 | How interested would you be in hearing about the following subjects during an information meeting about end-of-life care? Declarations of intent (how to record your wishes on paper) |
| te20a123 | Are there any other subjects you would like to receive information about during an information meeting? |
| te20a124 | Please indicate what other subjects you would like to receive information about during an information meeting: |
| te20a125 | In which of the following ways would you like to receive information about an information meeting? A letter from my doctor addressed to me personally |
| te20a126 | In which of the following ways would you like to receive information about an information meeting? A letter from a different organization addressed to me personally (such as when the municipal authority sends letters to all residents aged 65+) |
| te20a127 | In which of the following ways would you like to receive information about an information meeting? An announcement in a local newspaper or door-to-door paper |
| te20a128 | In which of the following ways would you like to receive information about an information meeting? A poster in the library and/or the community center |
| te20a129 | In which of the following ways would you like to receive information about an information meeting? An announcement in the church bulletin or during a service |
| te20a130 | In which of the following ways would you like to receive information about an information meeting? A poster at a care institution (e.g. the family doctor’s surgery or a hospital) |
| te20a131 | In which of the following ways would you like to receive information about an information meeting? Other |
| te20a132 | In which of the following ways would you like to receive information about an information meeting? Other, namely: |
| te20a133 | Do you think you would attend an information meeting about end-of-life care if that meeting was organized by your own doctor |
| te20a134 | Do you think you would attend an information meeting about end-of-life care if that meeting was organized by a hospice |
| te20a135 | Do you think you would attend an information meeting about end-of-life care if that meeting was organized by a different care institution (e.g. a hospital or residential care center) |
| te20a136 | Do you think you would attend an information meeting about end-of-life care if that meeting was organized by a welfare organization |
| te20a137 | Do you think you would attend an information meeting about end-of-life care if that meeting was organized by an organization of spiritual counsellors (e.g. Centrum voor Levensvragen, the Centre for Existential Questions) |
| te20a138 | How is your quality of life, generally speaking? |
| te20a139 | In the past months, have you been concerned about any of the following issues? Physical complaints, like pain or shortness of breath |
| te20a140 | In the past months, have you been concerned about any of the following issues? Not or no longer being mentally capable of properly making your own decisions |
| te20a141 | In the past months, have you been concerned about any of the following issues? Being unable to accept things the way they are |
| te20a142 | In the past months, have you been concerned about any of the following issues? Not or no longer being able to manage your own personal care |
| te20a143 | In the past months, have you been concerned about any of the following issues? Being or becoming a burden to others |
| te20a144 | In the past months, have you been concerned about any of the following issues? That you have lost or will lose control of your own life |
| te20a145 | In the past months, have you been concerned about any of the following issues? Being treated insensitively |
| te20a146 | In the past months, have you been concerned about any of the following issues? That your doctor or doctors will not sufficiently take your wishes into account |
| te20a147 | In the past months, have you been concerned about any of the following issues? Being or becoming lonely |
| te20a148 | In the past months, have you been concerned about any of the following issues? Death |
| te20a149 | In the past months, have you been concerned about any of the following issues? Your loved ones (for example because of health or financial problems they may have) |
| te20a150 | Have you been concerned about any other issues? |
| te20a151 | In the past month, how concerned have you been about this other issue? |
| te20a152 | Do you think that you have an accurate picture of the kind of health issues you may have to deal with in the future? |
| te20a153 | How often do you have someone help you read hospital materials? |
| te20a154 | How confident are you filling out medical forms by yourself? |
| te20a155 | How often do you have problems learning about your medical condition because of difficulty understanding written information? |
| te20a156 | Please tick the one box that best describes your health today: Mobility |
| te20a157 | Please tick the one box that best describes your health today: Self-care |
| te20a158 | Please tick the one box that best describes your health today: Usual activities (e.g. work, study, housework, family or leisure activities) |
| te20a159 | Please tick the one box that best describes your health today: Pain / discomfort |
| te20a160 | Please tick the one box that best describes your health today: Anxiety, depression |
| te20a161 | I have little control over the things that happen to me. |
| te20a162 | There is really no way I can solve some of the problems I have. |
| te20a163 | There is little I can do to change many of the important things in my life. |
| te20a164 | I often feel helpless in dealing with the problems of life. |
| te20a165 | Sometimes I feel that I'm being pushed around in life. |
| te20a166 | What happens to me in the future mostly depends on me. |
| te20a167 | I can do just about anything I really set my mind to do. |
| te20a168 | How important is faith or religion in your life? |
| te20a169 | Was it difficult to answer the questions? |
| te20a170 | Were the questions sufficiently clear? |
| te20a171 | Did the questionnaire get you thinking about things? |
| te20a172 | Was it an interesting subject? |
| te20a173 | Did you enjoy answering the questions? |
| te20a174 | Starting date questionnaire |
| te20a175 | Starting time questionnaire |
| te20a176 | End date questionnaire |
| te20a177 | End time questionnaire |
| te20a178 | Duration in seconds |
Response Information
Response Overview
Selected number of household members: 1,333 (100.0%)Non-response: 91 (6.8%)
Response: 1,242 (93.2%)
Complete: 1,232 (92.4%)
Incomplete: 10 (0.8%)
Collection Events
Period
07-09-2020 to 29-09-2020
Sample
A random selection of net 1000 respondents aged 65 years old and older.
Collection Mode
internet survey
Fieldwork Note
A reminder was sent twice to non-respondents.
Publications
Bergmans, T. D.,
et al. (2023). Awareness and actual knowledge of palliative care among older people: A Dutch national survey. Journal of Pain and Symptom Management, 66(3), 193-202.