The current perspectives regarding the burden on mental health caregivers

Abstracts

Foi realizada uma revisão sistemática da literatura sobre sobrecarga de cuidadores em saúde mental. Os trabalhos foram selecionados na Biblioteca Virtual de Saúde (BVS), utilizando-se as palavras-chaves: sobrecarga do cuidador (caregiver burden). Os principais critérios para este estudo foram: artigos completos, publicados entre 2000 e 2010, nos idiomas português, inglês ou espanhol; indexados nas bases da BVS, que investigam a sobrecarga do cuidador em saúde mental, tendo cuidadores como assunto principal. Para análise foi considerado: o título, ano de publicação, objetivos, abordagem metodológica, instrumentos e principais resultados. A análise de 114 artigos na íntegra apontou como objetivos predominantes a sobrecarga entre os cuidadores informais e a validação de escalas psicométricas, destacando-se a Escala de Zarit. Alguns estudos apresentaram associação entre altos níveis de sobrecarga, ocorrência de sentimentos de culpa e sintomas depressivos. Em contrapartida indicaram intervenções psico-educacionais como positivas. Trata-se de uma temática com crescente interesse cientifico e necessidade de aprofundamento relacionado ao cuidador formal.

Cuidadores; Saúde mental; Enfermagem psiquiátrica; Estresse psicológico

ARTIGO DE REVISÃO

The current perspectives regarding the burden on mental health caregivers

Perspectivas actuales acerca de la sobrecarga del cuidador en salud mental

Lucilene Cardoso^I; Mariana Verderoce Vieira^II; Maira Aparecida Malagutti Ricci^III; Rafael Severio Mazza^IV

^IProfessor, Department of Psychiatric Nursing and Human Sciences, University of São Paulo at Ribeirão Preto College of Nursing. Ribeirão Preto, SP, Brazil. [e-mail]

^IIRN. Doctoral student, Graduate Program in Psychiatric Nursing, University of São Paulo at Ribeirão Preto College of Nursing. Ribeirão Preto, SP, [e-mail]

^IIINursing undergraduate, University of São Paulo at Ribeirão Preto College of Nursing. Ribeirão Preto, SP, Brazil. [e-mail]

^IVNursing undergraduate, University of São Paulo at Ribeirão Preto College of Nursing. Ribeirão Preto, SP, Brazil. [e-mail]

Correspondence addressed

ABSTRACT

A systematic literature review was performed regarding the burden on mental health caregivers. The studies were selected from the Virtual Health Library - Biblioteca Virtual de Saúde (BVS), using the keyword caregiver burden. The main criteria for this study were: full-text articles published between 2000 and 2010, in Portuguese, English or Spanish; indexed on the BVS databases; which investigated the burden of mental health caregivers, and had caregivers as the main subject. The analysis was performed considering the following: title, year of publication, objectives, methodological approach, instruments and main results. The analysis of 114 full-text articles showed the predominant objectives were the burden on informal caregivers and the validation of psychometric scales, particularly the Zarit Scale. Some studies showed an association between high levels of burden, feelings of guilt and depressive symptoms. On the other hand, psycho-educational interventions were indicated as having a positive impact. This theme has a growing scientific interest and there is a need for deeper studies addressing formal caregivers.

Descriptors: Caregivers; Mental health; Psychiatric nursing; Stress, psychiological

RESUMEN

Se realizó revisión sistemática de literatura acerca de sobrecarga de cuidadores en salud mental. Se seleccionaron trabajos de la Biblioteca Virtual de Salud (BVS), utilizándose los descriptores: sobrecarga del cuidador (caregiver burden). Fueron criterios: artículos completos, publicados entre 2000-2010, en idioma portugués, inglés o español; indexados en las bases de BVS, investigar sobrecarga del cuidador de salud mental, teniendo al cuidador como asunto principal. Para el análisis se consideró: título, año de publicación, objetivos, abordaje metodológico, instrumentos y principales resultados. El análisis de 114 artículos en total, demostró como objetivos predominantes la sobrecarga entre cuidadores informales y validación de escalas psicométricas, destacándose la Escala de Zarit. Algunos estudios presentaron asociación entre altos niveles de sobrecarga, aparición de sentimientos de culpa y síntomas depresivos. En contrapartida, indicaron como positivas a las intervenciones psico-educativas. Se trata de una temática de creciente interés científico y necesidad de profundización en relación al cuidador formal.

Descriptores: Cuidadores; Salud mental; Enfermería psiquiátrica; Estrés psicológico

INTRODUCTION

In the dynamic health-disease process, the condition of being ill, which is a crisis situation, is common among humans and requires health care in order to establish a condition of health and balance of individuals and groups. In many cases, this care cannot be self-performed, hence the caregiver assumes an important role.

The caregiver is the person, who may or may not be a relative, that is willing to take care for the ill or dependent person, helping him or her to perform the activities of daily living, with or without remuneration, such as: personal hygiene, eating, administering medication, attending doctor appointments, banks or drugstores, regardless of the severity of the disease and the care flow⁽¹⁾.

Caregivers may be formal or informal. Formal caregivers refer to the teams of health care professionals, which includes nursing, of which competencies are centered on maintaining that care. Informal caregivers are often relatives, mainly females, who help with mental health care at home, without remuneration and receiving poor assistance and guidance from health care services⁽²⁾.

The care that is provided ranges from simple interventions to intensive, specialized, care. Depending on the characteristics of the caregiver, the health care needs, the conditions for providing that care, socio-cultural factors, and the patient's needs, that care may become a source of stress and cause a serious burden to the caregiver.

Mental illness is known to be one of the most incapacitating diseases, therefore it often implies the need for constant care. Studies indicate that without the proper support and guidance to provide the necessary health care, the caregiver is overloaded and often also becomes ill⁽³⁾. This burden may imply sever consequences to the caregiver (formal or informal) as well as to the patient and his or her family.

Caregiver burden is an experience of carrying a load, described as being negative changes to their everyday life related to the process of care, the implementation of habits and greater responsibilities. These changes often require adaptations that may interfere on the caregiver's needs, cause an accumulation of responsibilities, stress, costs, and even force them postpone personal plans^(3-4).

It is important to note that caregiver burden is a phenomenon easy to notice and that it persists even when the patient responds well to innovative and effective treatments. Tehre are two types of family burden has two sides; the objective burden and the subjective burden⁽⁵⁾. The greatest difficulties reported by caregivers are related to financial conditions, physical burden, and the patient's stubbornness⁽⁶⁾. The following factors may be related to higher levels of burden: lack of social support, patients' low level of functioning, low educational level of patients and relatives, inefficient coping techniques⁽⁷⁾.

Due to the relevance of this theme, the objective of this study was to identify and describe how caregiver burden has been investigated and what is the major evidence highlighted in studies published over the last decade with the purpose to trigger a reflection about this issue and encourage the development of interventions to improve the care that it given to mental health caregivers.

METHOD

A systematic literature review was performed, considering this is an important strategy for performing a broad and careful investigation of the scientific production about a certain phenomenon, with the purpose of demonstrating the approaches and evidences to be explored⁽⁸⁾. The review was performed following seven steps: establishing the guiding question; defining the inclusion criteria and the search strategy; searching the studies; selecting the articles; performing the critical evaluation; collecting and synthesizing the results.

First, the guiding question was established: how have the scientific studies from the last decade (2000 to 2010) approached the issue of mental health caregiver burden? Then the inclusion criteria and search strategy were determined: full-text articles published in scientific journals between 2000 and December 2010, in Portuguese, English or Spanish; indexed on the databases of the Virtual Health Library (BVS); which investigated and/or addressed mental health caregiver burden; with caregivers as the main topic. Editorials, letters and studies published only in the form of abstracts were excluded.

For the search on the Virtual Health Library (BVS) the following words were used as descriptors: sobrecarga do cuidador and caregiver burden. The Virtual Health Library maintains a dynamic network of information sources with 15 databases in health, and over 15 million documents. The main databases are: LILACS, MEDLINE, Cochrane Library, SciELO, ADOLEC, BBO, BDENF, DESASTRES, HOMEOINDEX, LEYES, MEDCARIB, REPIDISCA, PAHO, WHOLIS. The search was performed online on BVS, in December 2010, using the integrated method, in all indexed and all sources, first with the words sobrecarga do cuidador and then with caregiver burden.

The next step was the selection, when all studies were checked, through their abstracts, in order to identify any repeated studies and if they met the inclusion criteria, and articles were selected for the analysis. For the critical evaluation the full-text articles were chosen. The final step was the data collection and synthesis, which involved their classification using an instrument addressing the following variables: year of publication, language, database where it was indexed, methodological approach, objective, sample, instrument, main results⁽⁸⁾.

By using the aforementioned keywords, 2,270 studies were located on BVS, 1,651 of which were published between 2000-2010, and 170 addressed mental health care (Chart 1).

After analyzing the abstracts of all the 170 studies, 114 full-text articles that met the criteria were selected. The selected studies were analyzed in terms of the year of publication, language, type of methodological approach, instruments used and main results.

RESULTS

The present study sample consisted of 114 full-text articles that addressed the caregiver burden issue in mental health care activities between 2000 and 2010.

It was observed that there is growing interest on investigating this topic in many countries. Regarding the year of publication, studies were published in every year of the referred decade, with the highest number of publications registered in 2010 (19 articles) and the lowest in 2000 (2 articles). The mean number of publications was 10.4 articles/years, and a significant increase was observed as of 2006. Most articles were published in English (88.6%) and indexed on Medline (92.1%).

These articles investigated the topic with different objectives, mostly involving the validation of scales and the analysis of the burden among informal caregivers (patients' relatives or close ones) and its correlations, aiming to identify and evidence the levels of burden (objective and subjective), its impact on the lives of theses caregivers and also the effects of the interventions used to minimize that impact.

To analyze the results, most studies used a quantitative approach (67.5%), followed by a qualitative approach (30.7%). The psychometric scales were the main instruments used, particularly the Zarit Burden Interview-ZBI (18.4%) and Caregiver Burden Scale- CBS (16.75%)> Many of these studies were related to the validation of these scales in different languages.

Most of the analyzed studies evidenced that most main caregivers were female. One other highlight are the psychometric characteristics of the validated scales, which showed good internal consistency and reliability in the test and re-test, e.g. the aforementioned Zarit Burden Interview-ZBI and Caregiver Burden Scale-CBS.

Regarding the caregiver burden, the studies found evidence of medium and high levels of burden related to mental health care, particularly for caregivers who were female, older, and with a low education level.

The main factors related to this burden were: patients' compromised functioning, caregiver's psychological suffering, changes in the relationship due to acute disease, threats, disturbances, daily dedication to care, changes in the social life, financial burden, living with depressive symptoms, patient's problematic behavior, dysfunction of roles or interruption of the family routine, and highly expressed emotions.

Furthermore, some studies presented alarming results that demonstrated an association between high levels of burden and the occurrence of feelings of guilt and depressive symptoms. On the other hand, studies have evaluated the efficacy of psycho-educational and multiple-component interventions as positive, indicating a considerable reduction in caregiver burden.

DISCUSSION

The present review permitted to identify that over the last decades, there was been a growing interest of researchers on the topic, and most studies were performed between 2005 and 2010 (72%). The higher number of studies addressed the burden of informal or family caregivers, in which the health care professional appears in a greater number and depth.

This growing interest is in agreement with the evolution of global policies about health care, which recommend humanization and high quality mental health care with the participation of the group of people involved in this context: patients, relatives, community and professionals.

Studies in this area, therefore, are necessary considering they permit to perform an integrative review to identify the possible deteriorations in the care being delivered and change procedures aiming to improve the quality of care⁽⁹⁾. Over the last years, the concepts of burden have been considered in several studies as an important means of evaluation, and collaborate with this recommendation⁽¹⁰⁾.

As a tool for this evaluation, many instruments have been developed and, from the caregiver's perspective, the use of psychometric scales has been evidenced due to their practicality, objectivity and broadness. The use of scales in health studies has been an important resource to elucidate complex phenomena originating from objective, as well as subjective, factors.

In this review, it was evident that this resource was used, and, for this reason, the quantitative approach was chosen to evaluate the burden of mental health caregivers. Regardless of the method and approach chosen to develop a study, maintaining the scientific rigor and method are of utmost importance. One good method is that, which, along with standardized instruments, permits a real and appropriate identification of the data, thus meeting the proposed objectives and being founded on pertinent theoretical frameworks^(11-12). Through a critical evaluation, it is concluded that qualitative and quantitative studies are not contradictory but complementary in a way that the data from one help understand the other⁽¹³⁾.

Most of the analyzed studies evidenced that most main caregivers were female. This finding confirms several health care studies and is associated with the socio-cultural issues that assign women the main role of providing care to the family and those in need. This task often requires full-time dedication, originating from an ideologically determined and accepted social construction, thus constituting an actual moral obligation^(14-15).

The studies successfully evidenced the burden issue related to care and shed light onto important related aspects. The first studies addressing the burden topic were published in the 60's⁽¹⁶⁾. Because it is a phenomenon related to stress and the load of living with disease, the main factors related to burden reflect issues associated to the difficulties to cope with daily conflicting situations, financial difficulties, and emotional stress.

The factors related to burden have been well described. A study performed in Brazil, with 150 psychiatric patient caregivers, evidenced that the objective burden, related to having to perform the care tasks was the main source of family burden. The factors related to a greater caregiver burden were: the caregiver holding a job, having a lower income, undergo health treatments and have children. Furthermore, the following subjective burden predictors were pointed out: the patient was experiencing a crisis, presented more problematic behaviors, living with children at home, and not having any income⁽¹⁰⁾.

In this setting of care for caregivers, there is still a need for further studies to elucidate their needs and interventions by health care professionals and services. Many times, the burden related to care increases the chances of caregivers falling ill themselves, which eventually neglects self-care over taking care of the other.

Studies have evidences that caregivers have a poorer quality of life, including a greater risk to developing diseases such as depression, particularly when patients are more dependent⁽¹⁷⁾. Other studies emphasize that a relative falling ill, marked by the constant presence of psychiatric symptoms, is directly associated with burden and the impact on the caregiver, as well as with the development of depressive symptoms⁽¹⁸⁾.

Because of their dedication to health care, caregivers assume the role of being the one providing care for themselves and the patient, which can create a routine of activities that overcomes their physical and emotional limits, which often go by unrecognized⁽¹⁹⁾.

CONCLUSION

Because this theme is relatively recent, one difficulty in the integrative review was to establish the best descriptor, due to the lack of standards by the researchers at the time of publication. A second difficult factor was the absence of essential data to understand the methodological course in the different studies, which included information about the location, population, and instruments that were used.

These difficulties may have avoided the identification of other important studies that may have been published in the studied decade, but were not associated with the descriptor used in this review.

Nevertheless, this integrative review demonstrated that the burden of mental health caregivers is a current and highly relevant theme for the development of new health care practices. The evaluated studies evidenced important aspects as well as the need for performing continuous studies to improve the care provided to caregivers.

The need for studies about the burden of formal caregivers invites to a reflection and evidences the need to develop further studies on this theme so as to contribute to the development of improved healthcare to formal and informal caregivers.

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Correspondência:

Lucilene Cardoso

Avenida dos Bandeirantes, 3900

CEP 14040-902 - Ribeirão Preto, SP, Brasil

Publication Dates

• Publication in this collection
  07 May 2012
• Date of issue
  Apr 2012

History

• Received
  06 May 2011
• Accepted
  16 Aug 2011