Aims and objectives. This literature review aims to delineate the determinants of perceived burden by informal caregivers and provide insight into the interrelatedness between these determinants. Background. Despite the attention given to the various determinants of perceived burden, their interrelatedness has not been unravelled. Insight into this interrelatedness is mandatory for the development of successful, complex, multivariate interventions to reduce perceived burden of informal caregivers. Design. Systematic review. Method. Four electronic databases, CINAHL, Embase psychiatry, Medline, Psychinfo and reference lists of selected articles, were searched. Publications between January 1985-2008 were included if they concerned mental illness, burden and care giving. Articles were selected according to predefined inclusion and exclusion criteria. Results. The results of mostly descriptive, cross-sectional and univariate research and the more process-oriented results coming from qualitative burden research are organised in a process orientated conceptual scheme or model adapted from the stresstheoretical framework by Lazarus and Folkman. The model indicates that perceived burden must be understood through the individual appraisal of stressors and the availability and use of internal and external resources. Perceived burden is the outcome of multiple, clinically overlapping psychiatric problems, problematic behaviour and functional disabilities. Conclusions. So far, intervention programs to reduce perceived burden of informal caregivers have not devoted much attention to the interrelatedness of the origins of burden. The conceptual model provides an overview of the various determinants of perceived burden and a clear picture of the possible interrelatedness appears. This overview of the most important sources of burden helps to develop a complex, multivariate intervention that is comprehensive, long-term, individually tailored and has the flexibility to meet the dynamics of burden over time. Relevance to clinical practice. Use of the conceptual model is crucial to professional nursing and the quality of support of informal caregivers.

BackgroundOwing 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.MethodsA qualitative, associative, inductive strategy and continuous simultaneous coding were used to interpret the data of 19 semi-structured interviews.ResultsWe 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.ConclusionsThe 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.

BackgroundThe recent policy of deinstitutionalization of health care in Western countries has resulted in a growing number of people - including elderly - with severe mental illness living in the community where they rely on families and others for support in daily living. Caregiving for partners, parents, children, and significant others can be a stressful experience and has been associated with psychosocial problems and poorer physical health. To support caregivers, a new, complex, nurse-led caregiver - centered intervention was developed. The intervention focuses on preventing deterioration in the wellbeing of caregivers. The objective of this study is to obtain a better understanding of the potentials of this new intervention.MethodsWe applied an interpretative qualitative field study at two Dutch mental health care institutes. Thirteen caregivers participated in a one-time semi-structured interview.ResultsFrom the caregivers’ perspective, a trusting relationship between caregivers and the mental health nurse is an essential condition for the depth and hence the effectiveness of the caregiver-centered counseling intervention. In this trusting relationship three overlapping and mutually reinforcing phases were identified (1) phase of engagement, (2) recognition of personal needs and (3) hope and optimism. Each phase encompasses key experiences that enhanced trust in that phase.ConclusionsCollaborative relationships between caregivers and mental health nurses provide a framework in which the mental health nurse can assess and help not only patients but also caregivers to gain insight into their situation and take on new roles and responsibilities in ways that promote their wellbeing.Electronic supplementary materialThe online version of this article (doi:10.1186/s12888-017-1209-2) contains supplementary material, which is available to authorized users.

BackgroundLiterature has shown the serious impact of severe mental illness on the daily life of caregivers. We studied reported caregiver support practices by mental health nurses for use in the development of a nursing intervention. We aimed to explore current caregiver support practices by mental health nurses.MethodsTwenty-one participants completed semi-structured interviews, and 17 participants attended two focus groups. All interviews were audio-taped, transcribed and coded for qualitative analysis.ResultsThe diversity in caregiver support could best be described by three prototypes: the tolerator, the preventer and the concerner, representing three approaches of involvement with caregivers. At one end of the spectrum are mental health nurses (MHN) who are essentially only concerned with the wellbeing of the care recipient and see the caregiver as a potential impediment in reaching the client’s goals. We call these the tolerators. At the other end of the spectrum are the MHNs who see the caregiver and the care recipient as inextricably connected with each other. In these cases the MHN directs her/his intervention towards both the informal caregiver and the care recipient. We call these the concerners. In the middle position are MHNs who realize that caregivers are important agents in the achievement of the client’s goals, and therefore consider preventing them from becoming overburdened as an important goal. We call these the preventers.ConclusionsBased on the extent to which the MHNs believe that the informal caregiver plays a necessary role in the client’s support system, and the degree to which they feel responsible for the caregiver’s wellbeing, three MHN prototypes can be distinguished. These prototypes determine how the nurses’ vision directs their understanding of their role and responsibilities and the content of their behaviour. This implies that a change in behaviour needs to be preceded by a change in vision. Therefore, promoting family support cannot be achieved by one-size-fits-all-programmes.