Zegwaard MI, Aartsen MJ, Grypdonck MHF and Cuijpers P
Background: Owing to the policy of extramuralization of care in most Western countries older people with severe
mental illness have to rely more and more on informal caregivers for daily care. Caregivers themselves are often
aged, and although caregiving implies an impact on daily life that exceeds the boundaries of usual informal care,
the impact differs across caregivers. Some caregivers seem to suffer more than others, and the differences cannot
be fully understood by factors currently known to exacerbate the burden of caregiving. In order to help caregivers
reduce the impact of caregiving it is important to gain a deeper understanding of factors influencing the burden
and its impact on the caregiver’s life. With this in mind, the aim of the study is to explore and understand
differences in the impact of long-term caregiving on the quality of life of caregivers who look after older adults
with severe mental illness.
Methods: A qualitative, associative, inductive strategy and continuous simultaneous coding were used to interpret
the data of 19 semi-structured interviews.
Results: We identified an underlying psychological factor “perceived freedom of choice” which explains the gross
differences in impact, leading to a definition of two main types of caregivers. Depending on how people perceive
freedom of choice to provide care, the consequences of caregiving can be characterized as a process of gain
(type 1) or loss (type 2). Four influential factors deepen the impact of caregiving for the type 2 caregivers, and two
subtypes are identified for this category. Consequences of caregiving are most readily seen in a deteriorating
quality of the relationship with the care recipient and in the psychosocial well-being of the caregiver.
Conclusions: The concept of freedom of choice adds to our understanding of the differences and explains the
variation in impact on the caregivers’ life. The type 1 caregiver generally experiences gain whereas type 2 generally
experiences loss, which puts the latter group typically at risk of becoming overloaded. Whether people perceive
that they have freedom of choice in caregiving is an important consideration in evaluating the type of intervention
needed to support caregivers.