Who is an Informal Caregiver
An informal caregiver is someone caring for a spouse/partner, a parent, an extended family member, or even a friend or neighbour.Read the examples to the right and check “yes” or “no” based on your experience.
Do you help a family member or friend with:
Yes / No
Questions |
Yes/ No |
---|---|
Transportation to medical appointments? | Yes / No |
Purchasing or organising medications? | Yes / No |
Monitoring their medical condition? | Yes / No |
Communicating with healthcare professionals? | Yes / No |
Advocating on their behalf with health, social, welfare providers or agencies? | Yes / No |
Getting in and out of beds or chairs or generally with moving about? | Yes / No |
Getting dressed? | Yes / No |
Bathing, showering or toileting? | Yes / No |
Grocery or other shopping? | Yes / No |
Housework or preparing meals? | Yes / No |
Managing finances? | Yes / No |
Emotional care or support? | Yes / No |
If you checked “yes” to one or more, you are an informal caregiver.
Who is a Care Recipient?
A care recipient is someone who receives caring from a spouse, a parent, an extended family member, or even a friend or neighbour as a result of a care need. Read the examples to the right and check “yes” or “no” based on your experience.Do you receive help from a family member or friend with:
Yes / No
Questions |
Yes/ No |
---|---|
Transportation to medical appointments? | Yes / No |
Purchasing or organising medications? | Yes / No |
Monitoring their medical condition? | Yes / No |
Communicating with healthcare professionals? | Yes / No |
Advocating on their behalf with health, social, welfare providers or agencies? | Yes / No |
Getting in and out of beds or chairs or generally with moving about? | Yes / No |
Getting dressed? | Yes / No |
Bathing, showering or toileting? | Yes / No |
Grocery or other shopping? | Yes / No |
Housework or preparing meals? | Yes / No |
Managing finances? | Yes / No |
Emotional care or support? | Yes / No |
If you checked “yes” to one or more, you are a care recipient.
FAQ
1Why am I asked to provide my email address?
Your email address will be used to send you the link to the follow up survey in six months time, as well as to communicate any results from the study. Your email address will be treated in confidence, stored separately from your research data and will not be shared with any other parties.
2Do I receive any financial compensation for being a part of the study?
Unfortunately, we are unable to provide any financial compensation for participating in the study.
3Do I and the person that I provide care for have to complete the questionnaire at the same time?
We are interested in your own personal views, thoughts and experiences and therefore ideally you should each complete the questionnaire on your own, but ideally on roughly the same time period/day. You may of course discuss your answers with each other, if you wish to.
If the person that you provide care to is not capable of participating, you are able to complete the survey for them.
It is also up to you whether you would both like to take part in the study, or if only one of you would like to participate. There is no obligation for you both to take part.
4What happens if I am not able to fill in the questionnaires on the day that I receive the invitation?
You will have three weeks to fill in the questionnaire after receiving the invitation email with the link to the questionnaire. If you do not fill in the questionnaire the day that you receive it, you will receive reminder emails after 3 and 7 days.
5What happens if I am not able to fill in the weekly questionnaires on the day that I receive the invitations?
We ask you to complete the questionnaire as soon as possible after you receive the link. However, if you are not able to complete on the same day, you will receive a reminder the next day. The link will be deactivated after a second reminder.
6What happens if I forget to fill in one weekly questionnaire?
If you miss filling in the questionnaire for a particular week, you will still receive invitation emails for the questionnaire(s) for the following week(s).
7Can I leave the questionnaire and continue it at a later time?
Yes, you are able to exit the survey at any time and re-open it at a later time. Any progress that you made will be saved and you will be able to start where you left off.
8Privacy - How is my data stored and used?
All information about you and the person that you provide or receive care from will be kept strictly confidential and stored securely according to national data protection regulations. Only members of the iCohort research team will have access to your data.
9Possible benefits and drawbacks of taking part in this study
Benefits may be: | Drawbacks may be: |
---|---|
❖ Your participation in the ENTWINE Survey on Informal care will help to increase understanding of the challenges and positive experiences of informal caregivers and care recipients | ➢ Filling in the initial survey takes around 40-60 minutes. In case you feel tired when completing the survey, you can always take a break and re-open the survey when you are ready again. |
❖ By reflecting on the questions presented in the survey, you may gain a greater understanding of your own care needs and challenges | ➢ Reflecting on your life as a caregiver might bring about all kinds of feelings and emotions. If any of our questions raise issues for you, we have provided links to some useful national caregiving organisations and information sites. |
❖ The information gathered will be useful in providing an evidence base for the possible development of new solutions to support both informal caregivers and the people that receive care. | |
❖ To gather information to bring to the attention of policy makers to benefit support for caregiving and care receiving | |
❖ In short: by taking part in the study you will also help future informal caregivers and their loved ones! |