Table 3.

Interview script and probing questions of the semi structured interviews with the caregivers and their dependent elderly

Introduction question: “We are conducting a study on the current situation of the caregiver in different European countries, especially on what supports them in playing their role at different levels (economic, employment..) “We are interested in your personal experiences and perceptions because you are probably the best placed to tell us on how you feel the caregiver is supported by different policies in this country and also in this region…

Part 1 : Description of the family, professional and living situation of the ICG (and of the DEP) Question 1 : “We’ll begin with some questions relating to you and your family, can you tell me something more about yourself (your age, children,…) can you tell us what is the composition of your family ?” Question 2 : “Do you live here, with… (the dependent elderly she/he cares for) ? Question 3 : “Could you describe your current job situation or (previous) occupation (voluntary work) ?” Question 4 : “Has your situation changed since you’ve been caring (for the elderly) and how ?”

Part 2 : Caregiver role Question 5 : (care history) “Since when did you start to take care of … OR “How long have you been providing care for the dependent elderly?” Question 6 : “How and why did you have to start caring for the dependent elderly? Can you tell me something more about it, what led you to take up this role?” Question 7 : “Are there other people you are looking after or take care of? (because of disability because of old age, sickness, mental health problems,… )?” Question 8 : “Are/were you the main caregiver of … ? Are there other people who help you with taking care of the elderly ? another family member, friends,… ?” Question 9 : “Can you tell me a little bit more about your role as caregiver, how do you feel about it? Prompts: what are the positive experiences of this caregiving role and what are the negative experiences ?” Question 10 : “As caregiver, which tasks are you doing specifically (tasks you are doing for the dependent elderly because he/she can’t do these anymore…) ?” Question 11 : “According to you, how much time do you spend doing these tasks /per week (in general, not per task) ?” Question 12 : “How do you feel about doing these tasks? (prompts: are some of these tasks more problematic than others and why? Which tasks do you feel most comfortable with and why?”) Question 13 : “How do these care tasks affect your daily life ?” Question 14 : “How do you cope with it ? Are there other family members or friends that help you with this ?

Part 3: Formal services for the dependent elderly Question 15 : “Which are the (professional) services (the dependent elderly) receive at home ?, Are there other arrangements with domestic help, health professionals, ICT support (alarm system,…), adaptation to the house, other (undeclared worker) ? Question 16 : “How has this changed (in term of intensity, frequency…) during the last six months ?” Question 17 : “Have you experienced some situations in which these formal services that support you were interrupted or could not be delivered ? For example a nurse who can’t come, an acute situation arise and the dependent elderly you care for needs suddenly more care, or the cleaning who doesn’t come? How do you deal with it?” Question 18 : “How are the costs of the professional services covered for ?” Question 19 : “ How could the services be improved in order to support you as an informal caregiver, (prompts: Are there some services that should be helpful (from your own point of view) for the person you care for, but he/she doesn’t receive? Why (financial reasons, poor quality, accessibility issues, values, bad reputation, doesn’t want to)?”

Part 4: Formal services for the informal caregiver Question 20 : “Do you need some care services at home for yourself ?” Question 21 : “Are there some services you use or not use that allow you to take a break from your care task or when you are ill or to allow you to go on holiday? why or why not? How did you find out about these services?” Question 22 : “What would be helpful for you as caregiver ?” Question 23 : “Are there some support services or information that you have used to help you as a caregiver in looking after the dependent elderly?” Whom did you receive help from? Why and why not? In how far has this helped you ? What way ? Question 24: “Do you consider that informal care givers are sufficiently informed concerning possible helps (financial, material, organisational, administrative....)? “ Question 25 : “How are you informed? Who provided this information?” Question 26 : “How has your role as caregiver affected your financial and or work situation? What could help you and/or what has helped you in what way in your financial and employment situation?” Question 27 : “Have you considered receiving financial remuneration ? How and why ? How would this help you ?” Question 28 : “In what way can this change you relationship with the elderly?” Question 29 : “Do you benefit from other measures that has helped you in your role as caregiver? Question 30 : “Are the services that support you at the moment enough to help you to care for the dependent elderly and to keep he/she at home in the long term ?” Question 31 : “How is your role as informal caregiver recognized?