Informal Care is the name of an additional questionnaire for caregivers. The questionnaire was implemented in Lifelines at the initiative of the UMCG Department of Epidemiology.
The questionnaire covers a broad range of subjects:

• General information on caregiving situation
• Health situation person receiving informal care
• Health situation person giving informal care
• Time allocation person giving informal care
• Assessment of objective burden - based on adapted version of the Dutch Objective Burden Inventory (DOBI) ¹⁾
  • Informal care tasks
  • Support with informal care tasks
• Experiences giving informal care, using the following models:
  • the Caregiver Reaction Assessment (CRA) to assess specific aspects of the caregiving situation ^{2) 3)}
  • the Positive Aspects of Caregiving Scale (PAC) to assess positive aspects of caregiving ⁴⁾
  • the measurement of The Netherlands Institute of Social Research (SCP) ⁵⁾
• Reason for providing informal care - list of 14 different motives ⁶⁾
• informal care and work

The Informal Care questionnaire is available for use for all researchers and can be requested through the catalogue. When requested, the contact person of the add-on will be informed. Note that some additional questions on informal care were asked in other general and additional assessments.

Within Lifelines, the Informal Care questionnaire was sent out from May 2013 up to and including July 2014. Both paper and digital questionnaires were distributed. The questionnaire was sent within 3 weeks of completing follow-up questionnaire 1C.

There was only one selection criterion for the Informal Care questionnaire: participants who indicated that they are an informal care giver in 1C were the only participants included in this add-on.

During the add-on study period, over 2,000 participants were invited for the informal questionnaire. The response rate was 50% (N~1,000).

• Oldenkamp, M. et al. (2016) Survey nonresponse among informal caregivers: effects on the presence and magnitude of associations with caregiver burden and satisfaction. BMC Public Health 16(1): 480.
• Oldenkamp, M. et al. (2017). The Lifelines Cohort Study: a data source available for studying informal caregivers’ experiences and the outcomes of informal caregiving. Journal of Compassionate Health Care, 4:6.
• Oldenkamp M. et al. (2018) Combining informal care and paid work: The use of work arrangements by working adult-child caregivers in the Netherlands. Health and Social Care in the Community 26(1): e122-e131

The Informal Questionnaire repeated several informal care items from Lifelines general assessments.
It also contained the Quality of Life (EQ5D) instrument.
In addition, the following variables were collected in the Informal Care Questionnaire on the subtopic General information on caregiving situation (Algemene vragen over uw mantelzorgsituatie):

The following variables were collected in the Informal Care Questionnaire on the subtopic Health situation person receiving informal care (De gezondheidssituatie van uw naaste):

The following variables were collected in the Informal Care Questionnaire on the subtopic Time allocation person giving informal care (Uw tijdsbesteding):

The following variables were collected in the Informal Care Questionnaire on the subtopic Informal care tasks (Uw mantelzorgtaken):

The following variables were collected in the Informal Care Questionnaire on the subtopic Support with informal care tasks (Ondersteuning bij uw mantelzorgtaken):

The following variables were collected in the Informal Care Questionnaire on the subtopic Experiences giving informal care (Uw ervaringen met het geven van mantelzorg):

* Question INFCARE32/cra_… is based on the CRA ^{7) 8)} - Question INFCARE34/pac_… is based on the PAC ⁹⁾ - Question INFCARE35/pes_… and INFCARE39/caregiver_reasons_adu_q_1_a-n (see below) are based on the SCP ¹⁰⁾

The following variables were collected in the Informal Care Questionnaire on the subtopic Reason for providing informal care (Redenen voor het geven van mantelzorg):

The following variables were collected in the Informal Care Questionnaire on the subtopic Combining informal care and work (Het combineren van mantelzorg en werk):