Survey on Informal Carers

1. Participant selection / Sampling methodology

This survey is offered through two recruitment methods, with the objective of achieving the highest possible level of representativeness of the target population:

a) Recruitment by telephone call

ILRES dials telephone numbers generated by computer using the Random Digit Dialing (RDD) technique. This method consists of generating telephone numbers from existing numbering roots, namely by using the initial digits allocated and published, for example, by the Luxembourg Institute of Regulation (ILR), and then creating all possible combinations of the remaining four or six digits respectively. ILRES does not possess any information concerning the identity of the individuals whose numbers are dialled. If the contacted person is interested in the study, the interviewer will ask a number of screening questions to verify whether their socio-demographic profile corresponds to one of the profiles sought for this survey. The interview will then be conducted either immediately or by appointment.

b) Recruitment through invitations sent to ILRES panellists

ILRES sends invitation emails to MyPanel members according to the total number of interviews required and the socio-demographic characteristics sought for this survey.

2. Who is the data controller and who is involved in the processing?

The Ministry of Family Affairs, Solidarity, Living Together and Reception of Refugees, hereinafter referred to as "the Ministry", acts as the data controller for the processing of personal data carried out for the purposes of this survey:

Ministry of Family Affairs, Solidarity, Living Together and Reception of Refugees (https://mfsva.gouvernement.lu/fr.html ) 13c, rue de Bitbourg, L - 1273 Luxembourg-Hamm 13c, rue de Bitbourg, L - 1273 Luxembourg-Hamm To contact its Data Protection Officer DPO: dateschutz@fm.etat.lu (for data protection-related matters only).

ILRES is responsible for collecting participants' responses, analysing those responses, anonymising them, and transmitting the anonymised data and survey results to the Ministry.

Nevertheless, for the purpose of inviting individuals to participate, ILRES uses its own contact databases. ILRES remains solely responsible for the data processed in connection with the management of its contact databases. Within the framework of this survey, these consist of:

• For MyPanel members, i.e. individuals who have registered with ILRES in order to receive regular email invitations to participate in online surveys, ILRES will send invitation emails to a portion of them according to the required sample size and the socio-demographic characteristics sought for this survey. ILRES will also process data necessary for survey administration, namely information indicating whether invited individuals have completed the questionnaire and, if applicable, when they completed it. This information is required to send reminders to those who have not yet participated and thereby achieve an optimal participation rate. For further details regarding the processing of MyPanel members' personal data by ILRES, please consult the privacy notice available at https://ilres.lu/, under the section "MyPanel members (online surveys)".
• Participants Contacted by Telephone: ILRES will dial the telephone numbers it has generated. ILRES will also process the data necessary for the administration of the survey, including the telephone numbers dialled, the dates and times of contact attempts, the outcome of each contact attempt (participation, refusal, no contact or not belonging to the target population), as well as the information required to organise scheduled interviews, including the participant's first name and availability for a follow-up contact. For further information on how ILRES generates and uses telephone numbers, please consult the information notice available on https://ilres.lu/ under the section "How ILRES S.A. uses your telephone number".

3. What personal data will be processed and for what purposes?

The purpose of the processing carried out through this survey is to obtain reliable information enabling a better understanding of the role of the "proche assistant" and of the similarities and differences that exist in practice with the status of a carer recognised by the Assessment and Control Administration (AEC). Many residents provide assistance to someone within their personal circle, whether that person is autonomous or dependent. Such assistance may be provided occasionally or on a more regular basis, and may relate either to everyday activities or to more specific support and care needs. Proches assistants differ from carers formally recognised under the AEC framework, although the distinction is sometimes difficult to establish in practice. The survey therefore seeks to help the Ministry clarify the respective roles of the proche assistant and the recognised carer, to better understand and compare the profiles of individuals assisting someone close to them, to gain a clearer picture of the types of assistance provided, and to identify the challenges they face.

To achieve these objectives, several categories of personal data need to be processed. These consist primarily of information provided directly by participants through their questionnaire responses.

• Socio-Demographic information necessary to verify that contacted individuals correspond to the target profiles and for carrying out segmented analyses by population group:

- Age category;

- Gender;

- Municipality of residence;

- Nationality(ies), by category;

- Household composition;

- Occupation status;

- Educational attainment level.

• Information relating to assistance provided to relatives

- Whether the participant provides assistance to someone close to them and, where applicable, whether they do so as an AEC-recognised carer;

- Relationship with the assisted person;

- Duration and frequency of assistance;

- Types of assistance provided;

- Motivations and obstacles encountered;

- Impact on the assisting person;

- Knowledge of available public support measures and, where applicable, use of such measures;

- Expectations of carers towards public authorities.

In addition, ILRES will process the information necessary to handle requests submitted by data subjects, whether these concern the processing of their personal data, questions relating to the survey itself, or technical support requests addressed to the Helpdesk. This information may include the contact details used or provided by the data subject, the dates and times of requests and responses exchanged by email, and the content of the requests and the corresponding written responses.

4. What is the legal basis for the processing of personal data?

The processing of personal data carried out as part of this study is lawful insofar as it is necessary for the performance of a task carried out in the public interest vested in the Ministry (Article 6(1)(e) of the General Data Protection Regulation (EU) 2016/679, hereinafter the "GDPR").

Indeed, the survey is necessary for the performance of the tasks entrusted to the Ministry under the Government's internal regulations approved by Grand-Ducal Decree of 27 November 2023, in particular with regard to general policies relating to older persons and persons with disabilities.

5. Who will have access to the personal data processed?

The personal data and information processed by ILRES will be stored through a cloud-based system on servers located within the European Union. The cloud service provider hosting this information is contractually bound not to use the data for its own purposes and may only access it where necessary for server maintenance activities.

ILRES uses a data collection software solution provided by NIPO Software BV, Amsteldijk 166, 1079 LH Amsterdam, the Netherlands. This company processes pseudonymised data solely for the purpose of providing access to its online data collection platform and does not have access to respondents' email addresses. Pseudonymised data refers to data that has been assigned a code or pseudonym and therefore does not contain directly identifying information such as an email address.

Only anonymous and aggregated data will be transmitted to the Ministry.

6. Are personal data transferred outside the European Union?

The personal data processed within the framework of this survey will not be transferred outside the territory of the European Union.

7. How long will personal data be processed?

ILRES will anonymise the data processed as soon as possible after completion of the survey and, in any event, no later than three months after your participation.

8. What are your rights?

Any individual whose personal data is processed in connection with this survey may exercise the rights granted under the GDPR, subject to the conditions and limitations set out therein:

• Right of access: The right to request information regarding the personal data being processed about them.
• Right to rectification: The right to request the correction of their personal data where such data is inaccurate.
• Right to restriction of processing: The right to request that processing be restricted, either for the period necessary to verify the accuracy of certain data, because the processing is unlawful or is no longer necessary, or while verifying, where applicable, whether the legitimate grounds of the controller override the interests of the individual who has objected to the processing.
• Right to object: The right to object to the processing of their personal data.
• Right to data portability: The right to request that their personal data be transmitted directly to another controller, provided that such transfer is technically feasible.
• Right to lodge a complaint with a supervisory authority: Where individuals consider that the controllers have failed to respect their rights regarding the processing of their personal data, they may lodge a complaint with a supervisory authority. In the Grand Duchy of Luxembourg, the competent supervisory authority is the National Commission for Data Protection (CNPD): https://cnpd.public.lu.

9. How you can exercise your rights?

Any request relating to the rights described above may be submitted to ILRES' Data Protection Officer either by post at ILRES, 41 rue du Puits Romain, L-8070 Bertrange, Luxembourg, or by email at DPO@ilres.com.

Please note, however, that as the survey is conducted without collecting respondents' identities, processing your request will require at least your email address or, depending on the recruitment method used, your telephone number.

Please also note that the data collected will be anonymised as soon as possible. Consequently, it is possible that the data will already have been anonymised by the time your request is submitted, in which case the request may no longer be actionable.

In all cases, a response will be provided as soon as possible and, unless exceptional circumstances apply, of which you will be informed, no later than one month after receipt of your request.