Family care of people with severe mental disorders: an integrative review

OBJECTIVE: to analyze the scientific literature on home-based family care of people with severe mental illness. METHOD: integrative review of 14 databases (CINALH, Cochrane Plus, Cuidatge, CUIDEN, Eric, IBECS, EMI, ISOC, JBI COnNECT, LILACS, PsycINFO, PubMed, SciELO, and Scopus) searched with the key words "family caregivers", "severe mental illness", and "home" between 2003 and 2013. RESULTS: of 787 articles retrieved, only 85 met the inclusion criteria. The articles appeared in 61 journals from different areas and disciplines, mainly from nursing (36%). The countries producing the most scientific literature on nursing were Brazil, the UK, and the US, and authorship predominantly belonged to university centers. A total of 54.12% of the studies presented quantitative designs, with descriptive ones standing out. Work overload, subjective perspectives, and resources were the main topics of these papers. CONCLUSIONS: the international scientific literature on home-based, informal family care of people with severe mental disorder is limited. Nursing research stands out in this field. The prevalent topics coincide with the evolution of the mental health system. The expansion of the scientific approach to family care is promoted to create evidence-based guidelines for family caregivers and for the clinical practice of professional caregivers.


Introduction
Mental illnesses or disorders can be classified into two major groups: common mental disorders (CMDs) and severe mental illness (SMI) (1)(2)(3) . CMDs are more frequent and less disabling for individuals and are usually treated by a single health care professional (1) . SMIs are more disabling and meet three conditions: (a) a medical diagnosis that includes a psychotic disorder (excluding organic) or certain personality disorder, b) a disease and treatment duration greater than two years, and, (c) the presence of disability, understood as moderate or severe difficulty with overall functioning (work, social, and family) (4) . Examples of SMIs include schizophrenia, bipolar disorder, delusional disorder, and schizoaffective disorder.
Epidemiological data on the prevalence of SMI in the general population are difficult to obtain because of variability among information sources. However, the international scientific community agreed that between 2.5 and 3% of the adult population presents an SMI (1) . The global disease burden from disability attributable to mental, neurological and substance use disorders reaches 14% (5) . The economic cost of mental disorders in countries with a market economy is close to 3% of the GDP (6) . The cost of mental disorders in the European Union is estimated to range between 3 and 4% of the GDP (7) .
During the history of humankind, the societal treatment of individuals with SMI has included mainly imprisonment in institutions, such as nursing homes or mental asylums. This trend was reversed during the second half of the twentieth century, a period in international history that witnessed great changes that enabled the integration of people with SMI into society. According to the World Health Organization (WHO), these changes included the discovery of new drugs that permitted novel social interventions, the rise of movements defending human rights, and the incorporation of mental and social components into the definition of mental health (8) . This so-called psychiatric reform set aside the old model of asylum care and emphasized a new model centered on community mental health care (9)(10)(11) . Furthermore, the development of primary care driven by WHO in the Declaration of Alma-Ata (12) gained renewed strength.
Gradually, people with SMI have been integrated into society, meaning that the responsibilities of caring for them have been transferred from institutions to the community (13) . Estimates indicate that between 40 and 90% of people who suffer from mental problems live with or retain close contact with relatives (14) . This new model of community mental health care entails shared care of the person with SMI. The agents in charge of this care are health care professionals (formal care) and family caregivers (informal care). Families take an active role in caring for sick family members, making it a workable and unavoidable remedy in the community context (15)(16)(17) .
A European study (18)  what do we know regarding home-based family care for people with SMI? This is a reality that must be more carefully examined, and such an examination is the purpose of the present study.

Method
Using a qualitative approach, the present study analyzed the scientific literature during the last decade on the home-based family care of people with SMI. The implementation of the study involved an integrative review of the literature using a process of systematizing and analyzing results from independent studies aimed at understanding a particular topic (19) .
The following steps are required to complete such a review (there are small variations among different authors) (19)(20)(21)(22)   To meet the inclusion criteria, articles had to contain the three combinations of key words, investigate a population of legal age (at least 18 years of age), and be written in any of the three languages listed. Articles that did not meet the above criteria were excluded.
Once consensus was reached regarding the relevant information from each article, researchers synthesized the information. The research variables and an operational definition of the information gathered are presented in Figure 1. The variables are categorical/ qualitative and polytomous (23) .
The articles were selected according to the inclusion criteria, and the research variables were defined through peer reviews. Next, the information was entered into a spreadsheet created specifically for the purpose.
Discrepancies among the reviewers were resolved by consensus. The gathered data were summarized in the form of a frequency distribution and treated statistically using a computer spreadsheet.

Results
The Juan-Porcar M, Guillamón-Gimeno L, Pedraz-Marcos A, Palmar-Santos AM. was a case-control study, and three (6.52%) were quasi-experimental papers.  (5) Coping (2) Perceived needs and shortcomings of the caregiver (2) Needs of the caregiver assessed with instrument (1) Caregiver expectations (2) Use requirements or standards of mental health services (1)

Discussion
Integrative reviews constitute a type of research that combines experimental and nonexperimental approaches to achieve a complete understanding of the phenomenon analyzed, integrating data from empirical and theoretical literature (21) . For the topic studied, this type of research provides not only expanded knowledge but also a state-of-the-art synthesis and the detection of knowledge gaps for future analyses. The meticulous study of these publications showed that more than one-third of the journals examined fell within the scope of nursing knowledge. This constitutes a significant finding because the search strategy did not include such key words as "enfermería" (DeCS) and "nursing" (MeSH) and was not limited to databases specific to the nursing discipline.
Of the 22 (100%) journals in the scientific field of nursing, 11 (50%) had an impact factor (25) (23) . For further understanding on experiences related to family care, close attention is required, and nursing professionals are fully trained for this purpose. Qualitative methodology has the potential to provide a better understanding of family care practice (27) .
For subject matter, the most studied topic was work overload, particularly that of the family caregiver.
The concern for this topic may result from changes internationally in the model of mental health care (11) , shifting from formal to informal care. In Spain, family caregivers provide 88% of care, whereas formal caregivers provide 12% (28)(29) .
Finally, regarding resources, the current study demonstrated that articles analyzing the implementation of new technologies stand out in the mental health field.
One limitation of this study is that international variability in the meaning of the keyword home/hogar interfered with the selection of articles by introducing articles that did not correspond to the topic of study.
Differences between mental health systems and their varied development in primary health care are additional limitations that were encountered (11,34 ) . Each country

Conclusions
The databases with greater experience in the field hosted more articles on the topic of this study. Moreover, searching specific databases in education, social sciences, or psychology did not contribute articles to this review. Nursing professionals and formal caregivers who already cater to informal caregivers or families-or those that will increasingly be obligated to do so by mental health reform-can apply this analysis in the development of their clinical practice.