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21SOME MEDICAL-PSYCHOLOGICAL ASPECTS OF FAMILY CAREGIVING IN FAMILIES, WHERE A PATIENT WITH ENDOGENOUS MENTAL DISORDER LIVES
Kaminska A.
MD, PhD, Associated professor, Department of Medical Psychology and Psychiatry with the Course of Postgraduate Education of National Pirogov Memorial University, Vinnytsya, Ukraine
Abstract
Family caregivers of patients, diagnosed with endogenous mental disorders, face challenging psychosocial situation, that demands maximum activation of personality adaptation resources of family members in order to ensure resocialization and rehabilitation of the patient. Family caregivers' burden is connected to psychosocial resource of family and its support potential for promoting psychosocial rehabilitation of patients with endogenous mental disorders.
The aim of this study was to determine dynamics of family burden indicators in family caregivers of patients with endogenous mental disorders in context of their psychosocial functioning.
168 family caregivers of patients with paranoid schizophrenia and 75 family caregivers of patients with affective disorders (bipolar disorder, recurrent depressive disorder) were included into study. Control group was represented by 55 mentally healthy persons.
Family burden indicators were estimated using Experience of Caregiving Inventory (ECI) by G. Shmukler et al. (1994).
Study of the dynamics of family burden indicators revealed following patterns: with an increase in the duration of the disease, levels of family burden in family caregivers of patients with paranoid schizophrenia and affective disorders gradually increase according to the subscales of negative assessments with a simultaneous decrease in scores of the subscales of positive assessments, reflecting concentration of family members on negative aspects of the disease and exhaustion of their adaptive personality potential.
Revealed patterns should be taken into consideration, while developing and implementing appropriate complex system of medical and psychological support for families, where patients with endogenous mental disorders live.
Keywords: family burden, family caregivers, endogenous mental disorders, psychosocial treatment, rehabilitation.
Introduction. Endogenous mental disorders (EMD) are one of the most pressuring health problems not only for patients, but also for their family members [1, p. 18]. Reviewing the literature on caregiving in various ethnic and racial cultures unveils a lack of information on caregiver needs, and a need for multiple new ways of approaching interventions [4, p. 41-42]
As well as in other countries, in Ukraine family caregivers of patients with EMD suddenly face responsibilities, that they are not prepared to, requiring maximum of all family members' personality adaptation resources to enhance psychosocial resource of the family as a whole, because family, where a patient with EMD lives, is also an environment to ensure his resocializa-tion and re-adaptation.
Mental disorders are considered to be important public health problems not only to people with mental illness, but also their family caregivers [3, p. 202]. People performing informal caregiving to relatives or others in their surroundings sustain a great support resource for the care recipient, the health care system and for society in general. Though informal caregiving lies outside the market economy and is often socially and politically invisible, its economic value is generally not acknowledged, but estimated to be of high value [6, p. 2-3].
With the development of healthcare system, family caregivers are becoming major donors of social support for patients with EMD [8, p. 170]. In a situation of development and progression of mental disorder in a close family member, family caregivers are supposed
to provide care, assistance and support, withstanding the relevant consequences of illness and its treatment [5, p. 149]. The impact of presence of mentally sick patient in family system on family members has been highlighted in many studies [2-8]. This causes the phenomenon of "family burden" [13-15]: changes in quality of life, limitation of social roles and activities, as well as an increase in number of psychosomatic, anxiety or depressive symptoms. Objective negative manifestations of family burden include decrease of physical health and quality of life of family caregivers, disturbance of family interaction, increase of financial expenses, while subjective effects are resulting in specific psycho-emotional consequences: feelings of isolation, loss, anxiety, frustration, etc. [16]. Family members, who live or spend long periods of time with a mentally sick person are known to be experiencing more intense family burden because prolonged contact with the patient requires attention, availability, patience, and psychological resilience. At the same time, negative effects of family burden and negative experience of interacting with the patient may affect the family caregivers' ability to support the patient.
Caregiving burden, often referred to as caregiving stress, role strain, or hassle, was originally defined by Hoenig and Hamilton (1966) as the situations and tasks of caregiving (objective burden) and caregivers' distress about taking on those tasks (subjective burden) [9, p. 1492]. In fact, patients and their families are constantly affected by the changes resulting from the disease and its treatment. These changes gradually reduce
levels of performance and adaptation abilities of family members, they also cause destruction of psychoemo-tional stability and family interpersonal communication models, lead to ineffective relationships among family members, emergence of financial and economic problems, reduced social interactions of the family, changes in roles, reduced quality of life and life expectancy, and emergence of reactions such as anger, guilt, self-stig-matization, grief, hopelessness and even denial [2, p. 329].
Growing the ability of family resilience is not an easy, but a very promising effort. Families should be able to identify risk factors and manage these to achieve a dynamic family situation and have the ability to survive while caring for patients with schizophrenia and affective disorders [10, p. 255].
A specific feature of psychosocial therapy and psychosocial rehabilitation of patients with EMD is the importance of the active involvement of family care-givers into the treatment and rehabilitation process in order to achieve and maintain the highest possible level of social functioning of the patient. Family burden is a significant factor, that determines family caregivers' psychosocial resource and family potential in terms of providing optimal conditions for facilitating psychosocial rehabilitation and re-adaptation of patients with EMD.
A small amount of research in this field in Ukraine and the lack of comprehensive medical and psychological support system for families, where there are patients with EMD, attracts attention. Therefore, the aim of our study was to determine the level of family burden in family caregivers of patients with EMD in context of their psychosocial functioning to assess the psychosocial resource and socio-therapeutic potential of the family and to further develop an appropriate comprehensive system of medical and psychological support for families, where a patient with EMD lives.
Materials and methods. To achieve this aim, according to the principles of bioethics and medical ethics, following the informed consent conditions, 243 family caregivers of patients, who were diagnosed with paranoid schizophrenia (PSch) - 168 persons (main group of family caregivers of patients with PSch, FCP-Sch) and patients with affective disorders (AD) - bipolar disorder, recurrent depressive disorder - 75 persons (main group of family caregivers of patients with AD, FCAD), were examined. The inclusion criteria were: informed consent for filling up the questionnaire, clinical and psychological examination and psychological testing, absence of previous appeals to a psychiatrist, absence of craniocerebral trauma, 1-2 degree of affinity to a mentally sick family member. There were 49 wives, 25 husbands, 94 mothers/fathers of patients in FCPSch. FCAD consisted of 20 wives, 25 husbands, 30 - one of the parents of patients with AD. Respondents were in the age range from 26 to 63 years (average age: "wife" 37.5 ± 0.8 years, "husband" 42.3 ± 0.9 and "one of the parents" - 60.3 ± 3.7 years). Most of family care-
givers (64.5%) had a sufficient educational level (secondary and higher education), 55.1% had permanent job. 70.4% of the respondents of FCPSch and FCAD rated their living conditions as satisfactory, while 23.1% indicated unsatisfactory financial state of family, which has changed after the appearance of a patient with a mental disorder in family. Analysis of family relationships showed that presence of adequate relationships was stated by 19.5% of FCPSch and 28.6% of FCAD respondents, while 46.2% of FCPSch and 26.4% of FCAD respondents described their family relationships as full of conflicts and emotionally unstable. Control group (CG) included 55 mentally healthy persons (35 female and 20 male), in whose families there was no mentally ill patient and who never sought help from a psychiatrist.
Methods of research: anamnestic, social-demographic, clinical-psychological, psychological testing, statistical.
Family burden indicators were estimated using Experience of Caregiving Inventory (ECI) by G. Shmukler et al. (1994), consisting of 66 questions, grouped into 10 blocks, divided into two subscales: the negative evaluation subscale and the positive evaluation subscale. According to the subscale of negative evaluations, 8 main blocks are assesed: behavioral problems; negative symptoms; stigma; problems with psychiatric institutions; influence on the family; the need for supporting patient; dependence; losses. The subscale of positive evaluations consists of two blocks: positive experience of caregiving and positive aspects of relationship with the patient. When answering a particular question, the patient's relatives were offered one of five possible answer choices: never (0 points), rarely (1 point), sometimes (2 points), often (3 points), almost always (4 points) ). When processing the received data, the sum of points for each section was calculated separately. The results were evaluated in dynamics (in groups of family caregivers of patients with EMD with disease duration up to 4 years (FCPSch1 and FCAD1), from 5 to 8 years (FCPSch2 and FCAD2) and over 9 years (FCPSch3 and FCAD3). Estimation of the indicators of the ECI scale in dynamics allowed to analyze changes in family burden, that occur within the process of disease (Fig. 1 and Fig. 2).
In general, dynamics of family burden is characterized by a simultaneous increase in indicators at one parameter and a decrease in other parameters with the increase in duration of the disease in a mentally ill family member. In most blocks, the subscale of negative family burden assessment (the first 8 blocks) has shown a tendency to increase in FCPSch respondents, while FCAD respondents have had a gradual stabilization and decline in family burden. An exception is the "problems with psychiatric institutions" block, where general decline in both FCPSch and FCAD groups was noticed, which can be attributed to the family caregivers' getting confidence due to obtaining the experience of seeking specialized help at appropriate healthcare institutions.
O
m
J
Behavioral problems Negative symptoms Stigma Problems with psychiatric Influence on family Supporting Dependenc the patient e Losses Positive personal experience Positive aspects of relationshi
institutions p
FCPSch1 22 17 18 30 23 6 17 14 16 8
■ FCPSch2 26 21 17 25 25 18 14 18 15 6
■ FCPSch3 27 22 23 20 26 21 10 20 12 6
Figure 1. Dynamics of family burden levels in family caregivers of patients with paranoid schizophrenia
A noticeable increase in family burden level with increase of the duration of the disease is noticed at the blocks: "behavioral problems", "stigma", "influence on family", "losses" (Fig. 1 and Fig. 2). At the same time, in general, the FCAD respondents had lower rates than the FCPSch respondents, which is probably related to differences in disease dynamics and symptoms. The
FCPSch respondents additionally presented an increase in the "negative symptoms" and "supporting the patient" blocks.
According to the subscale of positive assessments of family burden, there were no revealed significant differences depending on the duration of the disease between the respondents of the FCPSch and the FCAD.
CO
Behavioral problems Negative symptoms Stigma Problems with psychiatric institutions Influence on family Supporting Dependenc the patient e Losses Positive Positive personal aspects of experience relationship
■ FCAD1 20 15 10 15 17 15 18 23 13 12
■ FCAD2 18 16 8 10 18 14 16 24 12 11
■ FCAD3 19 11 13 11 19 10 14 26 11 10
Figure 2. Dynamics of family burden levels in family caregivers of patients with affective disorders
A qualitative analysis of the obtained data indicates a subjective perception of a mentally ill family member as unpredictable, reckless, suspicious, strange in appearance according to the "behavioral problem" block. In FCPSch respondents, high scores on "negative symptoms" block indicate the propensity of family caregivers to evaluate a mentally ill family member as prone to loneliness, non-sociable, uninterested, slow, irresponsible or indecisive, which is explained by personality changes and family caregivers' inability to understand the nature of this changes and their connection with mental illness.
Scores of the "stigma" block demonstrate the family caregivers' desire to conceal a family member's illness; inability to tell anyone about mental illness in family; the associated avoidance of social contact; ignorance of how to explain the symptoms to others; feeling ashamed of having a mentally sick relative.
The parameter "problems with mental health institutions" indicates that, in the opinion of family caregivers, staff serving the mentally sick patients, do not take them seriously enough and do not treat their relative's problem with sufficient understanding; as well as the inability to state complaints about patient care; difficulties in obtaining information about his illness.
The "family impact" parameter reflects a clash of family caregiver with misunderstandings with other family members, a break in relationships due to a reluctance to live with the patient; negative influence of the patient's mental state on development of children; referring patients as causes of family disruption, spoilage of enjoyment of family events, and family life in general.
The "supporting the patient" parameter assessment has shown that both FCPSch and FCAD respondents evaluate a sick family member as not knowing how to handle money; that makes them provide or subsidize patients when they run out of money; they consider disease to be striking family budget; experiencing necessity to provide the patient with housing; making sure he doesn't contact the bad company.
According to the "dependency" parameter, the indicators are slightly higher in the FCAD respondents, although they tend to gradually decline. This section reflects the inability of family caregivers to do what they want because of the constant anxious thoughts of a mentally sick relative who is perceived as helpless and dependent; in need to help him to be busy with something; whom family caregivers are afraid to leave alone in the house.
The clear increase in the family burden scores at the "loss" block in both main groups reflects the reflections of the family caregivers on what life they might have had; self-blame and a sense of danger that the patient will attempt to commit suicide; anxiety about thoughts of death, lost opportunities; fears that the patient will do self-harm; disbelief in improving his condition.
The "positive personal experience" block, where the dynamics are negative both for FCPSch and FCAD respondents, reflects the gradual loss of their ability to gain positive family interaction experience with the patient, including using such interaction as a way to learn
more, let others understand how seriously ill the patient is; gaining self-confidence through communication with other people, understanding of other people's problems, getting closer to friends, making new acquaintances, achieving dignity.
There has also been a gradual decline in indicators of the "positive aspects of relationships" construct, indicating a general tendency in family caregivers to depreciate their role in ensuring the well-being of a mentally ill family member, as well as denying the patient's ability to be useful, to show willpower, in trying to cope with his or her illness; the ability to have pleasant communication; common interests.
The above mentioned features indicate that in the course of the development of endogenous mental disorder in the family member, family caregivers experience gradual increase of the family burden on all constructs, which can eventually lead to distancing and avoidance in situations of inter-family interactions.
Conclusions and prospects for further research. Acceptance of the illness by the family, a conscious, mature and impartial attitude towards its manifestations, combined with a willingness to participate in providing psychosocial rehabilitation and readaptation of a mentally ill family member, are important factors in the treatment of endogenous mental disorders. In families with patients with endogenous mental disorders, there are almost always problems of awareness and acceptance of personalilty and behavioral changes of a family member, resulting from the manifestation and development of the disease.
Typically, most family caregivers have a formal acceptance of the disease. Underestimating the severity of endogenous psychiatric disorders, family caregivers put too high demands on patients who are not fit enough for that. This situation sometimes leads to confrontation and dysfunctionality increase in the family system as a whole, the emergence of communication barriers, which can result in both exacerbation of mental disorders in patients with EMD, and a general decrease in quality of life of all family members.
Providing family caregiving for family members with endogenous mental disorders is obviously burdensome, but can also be a source of positive experience. Further research on negative and positive aspects of family caregiving is needed to broaden the understanding of caregiving experiences potential and design effective family interventions to decrease family burden and enhance positive aspects of family caregiving experience.
The prospect for further research is to take into account the revealed medical-psychological features of the functioning of the family where the patient with endogenous mental disorder lives, in the development and implementation of an appropriate system of medical and psychological support for family caregivers of patients with endogenous mental disorders, aimed at increasing beneficial socio-therapeutic potential of family environment.
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COMPARATIVE ANALYSIS OF THE DEPRESSIVE RESPONSE IN THE WORKERS OF THE MARITIME MERCHANT AND PASSENGER NAVY
Kosenko K.
MD, PhD, Odessa Regional Medical Center for Mental Health
ПОР1ВНЯЛЬНИЙ АНАЛ1З ДЕПРЕСИВНИХ ПРОЯВ1В У РОБ1ТНИК1В МОРСЬКОГО ТОРГОВЕЛЬНОГО I ПАСАЖИРСЬКОГО ФЛОТ1В
Косенко К.
к.мед.н., лкар-ncuxiamp КУ «Одеський обласний медичний центр психiчного здоров Уя»
Abstract
The purpose of the work is to study the presence and severity of depressive manifestations of the workers of the merchant and passenger navy, to determine the need to create system-specific measures for the protection of their mental health.
Contingent and research methods. During 2016 - 2019, 180 navy commanders of Ukraine were surveyed: 110 members of the merchant navy command staff and 70 members of command staff of the passenger navy. All surveyed were male, citizens of Ukraine. The study involved the use of clinical-psychopathological and psychodiagnostic methods.
The results of the study. The share of the ordinary workers of both merchant and passenger navy have manifestations of depressive response in the form of a mosaic combination of anhedonic and asthenic symptoms, mostly
