Ervaren belasting door mantelzorg; constructie van de EDIZ-plus

Abstract

To measure the experienced burden by informal carers (N = 2.444), a 15-item Mokken scale has been developed. This concerns an extended version of the EDIZ ("Ervaren druk door Informele zorg"); several items refer to the pressure of time brought by the combination of labour and care and the consequences for the health of the informal carers are added to the EDIZ. We call this new scale the EDIZ-plus; it concerns a reliable one-dimensional and hierarchical scale which extends from o (no burden) to maximum 15 (severe burden). First, the burden manifests itself in feelings of responsibility of the carer, followed by having difficulty with combining work and family tasks and ultimately exceeding all limits due to too many obligations. In most cases this last group does not only deal with conflicts at home or at work and a decline in their own health, they also experience all other problems in the scale. The presumed limit for overburdening is enclosed by the proposition 'caring put too much pressure on me'. This is a score on the EDIZ-plus of nine or higher. Furthermore, the scale has proved to be usable for several population groups, such as carers of partners and children, parents/parents-in-law and carers of different patient populations (people with dementia, mental disability or a chronic disease). The EDIZ-plus is not only suitable because of its reasonable psychometric qualities, but also because of the usability in different populations.

How Is End-of-Life Care With and Without Dementia Associated With Informal Caregivers’ Outcomes?

“…13 Additionally, it has been reported previously that relational aspects assessed on the PES (such as being appreciated by the care recipient, receiving something in return from the care recipient) are less applicable to informal caregivers of people with dementia, which may explain their relatively low score on the PES. 16 Nevertheless, since caregiver burden and positive experiences of care are different concepts, it is unknown whether the use of Pearlin stress-process theory 10 provided enough information to explain also positive experiences of care. It may be that dementia, a disease with far-reaching consequences for the personality and behavior of those affected, negatively impacts the intrinsic motivations to provide and rewards from providing long-lasting informal care and that informal caregivers’ attitudes and values regarding a “good death” may be conflicting with the reality with dementia.…”

Positive and negative evaluation of caregiving among three different types of informal care relationships

“…Caregiver burden is an important result of negative appraisal and measured with an extended version of the Self-perceived pressure from Informal Care Scale (De Boer et al 2012b). Respondents were asked whether they agreed with 14 statements on perceived time and emotional pressure, such as: 'Generally speaking I felt very pressured because of the situation of my care recipient'; and 'I was too tired to do anything in my free time in the period that I was providing help'.…”

The effectiveness of creating an online life story book on persons with early dementia and their informal caregivers: a protocol of a randomized controlled trial

“…It is measured with a Dutch questionnaire (Ervaren Druk door Informele Zorg or EDIZ) [45]. This instrument has been used in informal caregivers with dementia and proved to be reliable and valid in this group.…”