Health problems children are facing in this century are very different from those faced by their previous generations not only because of the social problems that have replaced many of the infectious diseases (like major cause of morbidity), but especially due to family changes. From the clinical point of view, the prospect of a correct approach in terms of prevention, requires imperatively to focus on this vulnerable group (family with a somatically ill parent) and at risk for mental health problems, neglected by the current health systems, so that experts in mental health of children and adolescents to cooperate with specialists in adult somatic medicine.
It is expected the intention to enhance the perception to the increased need for interdisciplinary approaches in healthcare, so to be understood that a consistent progression in the psychosocial services was based on therapeutic and preventive support for children in families with acute or chronic parental somatic conditions, arising from conceiving the family as a system and on some evidence. In such a family oriented health strategy, the preventive aspects of any medical or psychosocial perspective should be emphasized; in this bio-psycho-social perspective, the interventions at any level have implications on the primary, secondary or tertiary aspects of prevention and depend on each family member. Besides the perspective of prevention, the increasing quality of life for all family members should be a priority purpose of the welfare programs and activities.
Given that the theme includes issues not dealt by anyone before and in Romania are very new, I have decided, through this study, to identify the psychological problems of families with one parent suffering of acute (medium or severe) trauma of the Central Nervous System.
By building the psychosocial problematic profile of these families I have sought to obtain the information necessary to overcome the barriers, in order to meet the requirements for a successful therapy. The COSIP study („Children of Somatically Ill Parents”) has proved that early preventive psychological intervention for a long-term effect of psychopathology is effective. Usefulness of the study is as greater as the cranial-cerebral and spine trauma are a continuously growing phenomenon in the modern society and parents are affected in a stage of life when they have minor children. Recent findings argue for the need for early preventive intervention, given the importance of a balanced family system in insuring the health of each society.
Characteristics of the injured person and his/her family
It has been found that:
- The average age of families is 27.15 years (SD = 14.97) for: the average age of the impaired parent is 40.53 years (SD = 5.65), of the supporting parent is 40.95 years (SD = 6.48) and of the children is 11.9 years (SD = 3. 47).
- Father is the most common victim (60.3%) by: falling from another level (44.8%), traffic accidents (25.9%), other causes (27.6% secondary TCC) but also by unknown causes (1.7%).
- Impaired parent condition consists of severe or medium TCC (56.9%), TVM (31%) and TCC + TVM (12.1%). Autonomy assessment scores average is 55.14 (SD = 16.37)
- Disability prognosis upon patient discharge is: progression (13.8%), static (32.8%) and curable (53.4%); remission was observed in 50% of parents after 6 months of discharge.
- Supporting parent has mostly secondary education but specific is the primary level and is less committed than the one in the natural environment.
- General mental health of the family system is greatly increased, observing a trend towards normalization (20.8% „normal” and 7.5% „medical” compared to the control group in which the „normal” level is missing the „medical” intensity of deficits is for 31.5% of the families).
- The ability to redefine stressful events is improved (69% „normal” and 12.1% „poor” compared to 60% „normal” and 13.9% „poor” in the control group), which argues for the special need for information from specialists that a patient’s family members have.
- In an exploration of community resources, 62.1% of families with a parent who has suffered a CNS trauma seek and ask for help, willing to accept it also from the others (48.7% of the control group families reject this family coping mechanism by seeking and accepting help).
- Quality of life due to the physical component is low for 52.6% of the supporting parents, being described the confrontation with the suffering arising from self-care limitations or from the activities conducted, because of the physical pain and fatigue.
- Life quality due to mental component is low for the supporting parents because of the distress caused by emotional problems, role, social and professional disabilities (78.9%).
- In the context of „living with a cerebral and spinal injured person” the child is involved and reacts „as a partner” in problem solving; an increased self-assessment capacity was found and, out of a self-correcting effort, the tendency to normalization of behaviour is described, less for anxiety, depression, problems with thinking and internalization.
The traumatic event occurs in a system on the brink of psychopathology and triggers trends towards self-healing. This is the argument which supports that healing, guided to a delicate balance, to be undertaken by specialists, using a specific intervention developed and stabilized at the systemic level. Otherwise, the vicious circle installed expresses in the sense described by Cameron („why healthcare excess?”, 2006): Parent-patient asks to return into the circle of specialists to lower the intensities of psychopathology reappeared in the system, but his/her returning into the natural environment, without psychological intervention for early prevention at both levels (patient and family system), reinstalls the tendency to psychopathology.
To achieve and strengthen the implementation of preventive care for as many families within the public healthcare system it is necessary:
- the training plan (curriculum) of adult somatic medicine specialists to include child and family system development theory;
- to be given frequent supervision opportunities;
1. Recognition of risk factors in families
Relationship with the somatic disease creates a major family distress, not only through the uncertain or terminal prognosis and especially, by the following risk factors:
- huge insecurity of parents looking for suitable ways of communicating the threat;
- inaccurate information or vague about the parent’s disease;
- parental depression, no matter what is the gender of the ill parent;
- history of experienced trauma or loss, for both the parents and children;
- relational functioning within the family, especially low ability of expression and sharing of emotions (as in the avoidant attachment style) or fragile interpersonal boundary with affective over-involvement (as in the ambivalent attachment style)
These risk families have to be identified and involved in preventive intervention programs, because the children and adolescents develop poor coping mechanisms that expose them to the risk of long-term effects as psychopathology or psychiatric disorder.
Following the analysis of studies on preventive interventions, Romer et al. (2002) believe that future studies should: a. formulate interventions for the psychological needs of small and very small children; b. develop and publish the results of individual child interventions; c. develop several theories of interventions; d. implement methodologically the results of assessments of interventions and consider the perspective of all stakeholders: parents, children and therapists; e. make comparisons between different types of interventions on children with parents suffering from the same disease and, if possible, in the same phase of the disease.
From the clinical point of view, the prospect of a correct approach in terms of prevention, requires imperatively to focus on this vulnerable group (family with a somatically ill parent) and at risk for mental health problems, neglected by the current health systems, so that experts in mental health of children and adolescents to cooperate with specialists in adult somatic medicine.
It is expected the intention to enhance the perception to the increased need for interdisciplinary approaches in healthcare, so to be understood that a consistent progression in the psychosocial services was based on therapeutic and preventive support for children in families with acute or chronic parental somatic conditions, arising from conceiving the family as a system and on the following evidence:
Is recognized that severely ill children require psychological support to cope with their condition, including the supportive interventions for their parents.
The need for psychotherapeutic services to severely ill adults has been accepted by the medical system. Especially in the field of cancer, special services for mental health are part of the complete care of the patient, therefore, at least in the tertiary care; a separate discipline: psycho-oncology – was created.
In this manner of mental health integration for adults severely ill, the family is recognized as support for the patient so that targeting the mental health needs of children in these families may be considered something new, progressive, logical and pragmatic.
In such a family oriented health strategy, the preventive aspects of any medical or psychosocial perspective should be emphasized; in this bio-psycho-social perspective, the interventions at any level have implications on the primary, secondary or tertiary aspects of prevention and depend on each family member. Besides the perspective of prevention, the increasing quality of life for all family members should be a priority purpose of the welfare programs and activities.
2. Family with one parent with acute CNS trauma and the supporting parent
Given the acute onset, most often by a sudden accident, in full health, parent health damage is obvious and dramatic, often accompanied by the threat of imminent death. Everything moves very quickly, the problems are related to a crisis in the family that must cope with a totally new situation, along with limited coping capacities. The supporting parent „filters” the information with the intention to protect the children, building a tolerable picture despite the disease severity, and censoring dramatic aspects as coma, admission to the ICU or paralysis. It is created therefore a „conspiracy of silence” which could explain the absence of correlation between the disease severity and responses of children but the healthy parent’s emotional state influences the perception of disease severity ( Oancea et al., 2006 ).
Therefore, in acute damage of the CNS, concealment or denial are not effective, the more since they involve at the outset:
- risk of death of the affected parent
- pressure of many urgent problems
- an obvious change in family life and routine as well as between members
- healthy parent depression was found as real generating factor of children’s emotional reactions
- internalization of problems has been associated with the parental disease
- teenage girls have a strong tendency to internalize, presenting more symptoms than boys
- a substantial reduction in symptoms of children was observed in the group undergoing psychological intervention compared with the control group.
The term „caregiver stress” is used to describe the physical and emotional difficulties experienced by those who live in a family with someone with CNS trauma and can cause all kinds of problems that depend on the relationships between the family members. Questions asked by those who become caregivers are: „Can I really do this?” „Am I doing enough?” „Can I handle physically?” „When will I learn all about the duties of care?” „Will I be able to take care of myself too?”. This last question is crucial because if the family members do not know how to take care of themselves, will be unable to care for the sick parent. When stress becomes too high, negative emotions become dominant in the family and the family members may experience anger, guilt, depression, anxiety and the need to be alone, on the background of great weariness. It is very important to know the signs of stress, to be found early and prevented from developing, because, unfortunately, most often, the family members are waiting too long until accepting their own exhaustion and then it is too hard to find the appropriate ways to help them.
In our study (COSIP* – the experience in Romania) we find that by the CNS trauma of a parent is triggered additional trauma due to the sudden onset (usually an accident) in full health that generates a deep crisis in the family structure and functioning by the loss of a parental function. (Milea et al. . 2003; Oancea et al. , 2006; Rotărescu et al. , 2006; Onose et al. , 2008).
- The immediate consequence is the changing roles of each family member and life becomes loaded with more difficulties and overcome with despair.
- Usually, resources are mobilized to fight for the survival of the sick parent, the family being the most important support and care group.
- The immediate evolution of the patient’s condition is uncertain and long-term prognosis unknown, but frequently marked by temporary or permanent physical and/or mental disabilities.
- These disabilities constitute the burden of care to which the family becomes really excessive.
- Sacrifices of time, work, rest, availability and patience to understand the mutilated parent can extend for long periods and require major changes in the family life, centred now on the sick parent.
- All these are a big risk by neglecting the needs and welfare of the other family members, especially of the children (Oancea et al., 2006; Romer et al., 2005; Worsham, 1997, p.195-213).
Unlike chronic illness, sudden intervention of the disease as in the family with a parent with Traumatic Brain Injury develops a psycho trauma without the possibility of preparing through a stage of signs of concern felt at the gradual decline in the parental health quality.
As predictors of risk and/or protection, the data of our study suggest that:
- disease variables such as severity of impairment, duration and prognosis play a minor role for the psychological outcomes compared with the parental and family adjustment and with the coping patterns
- maternal depression, poor family functioning and ineffective coping parenting skills predict psychological disorders of children more than any other disease variable
- This information helps in the formation of intervention strategies where, in terms of mental health, the target in the prevention of psychopathology in children may consist of these factors affecting them.
3. Family – Concept and System
3.1. Concept Operationalisation
The concept of family defines the socio-biological and psychological unit characterized by relations of kinship between people who compose it; is the primary social nucleus formed by marriage, blood relation and adoption.
Family provides social identity as guardianship, has a joint budget and a cohabitation system – emotional dependency relationships, spontaneous, intimate and nuanced psychological distance, distribution of educational responsibility and co-participation and self-help.
3.2. Influence of family structure on the psycho-social behaviour
The concept of psychosocial phenomenon defines the result of the collaboration, approach and fusion between the psychological and the social, representing a new level of reality for which other qualitative determinations are defining.
Examination of these phenomena is made by reference to the concept of social conscience, they being considered as the first structural level of consciousness, over which the ideological level is overlaid. Psychosocial phenomena are not only spiritual facts, of consciousness, and are not found in fully inside it, but they fit directly on the social conditions of existence, are real life phenomena, dimensions of the everyday life of people who have physicality translatable in objective indicators.
Behaviour represents the most expressive mixture of social with the psychological, carried out with the participation of consciousness but without being fully encompassed in the categories of consciousness.
Behaviour refers to „all reactions that a living being expresses in an organized manner to the incitation included in the environment; it is, each time, based on a choice (selection) of many reactions possible, choice finalised for keeping the optimal form and function of that person as a whole.” (Schiopu U., 1997, p.164)
The components involved are intellectual, structural, intentional and emotional, in a closed stereotyped manner or open and capable of improvement.
Alfred Adler asserted that „to be human is not only a way of speaking, but to be a part of a whole, to feel part of a whole.” (A. Adler, 1991, p.17)
Human is a social being. Even from the early days of its existence is surrounded by his/her peers, is included in various social relations through which appropriates and internalizes shared fundamental values, symbols, collective representations, expectations, etc. Formation of human personality is the result of a complex process of socialization, in which personal, environmental and cultural factors interact.
Socialization can be performed both vertically through adults and horizontally (inter-socializing) by people of the same age, being an interactive communication process that involves the double consideration of the personal development and the social influences.
The concept of influence relate to the effects of descending or dependency interrelations: emotional, economic, professional, etc.
There is influence as experience or action, on the one hand, and influence as social stress and adaptation effect in a latent form. More active, continuous, direct and latent are the family environment influences during development. (Milea, 2006, p.137)
The family is of great importance in the formation and structuring of the child’s personality, however, the roots of the adult world are condensed in the family, thus contributing to the social future. Parents influence children by their conception of the world and life and by their behaviours (comprising temperaments, attitudes, desires, intolerances etc.).
Structures represent stable configurations of positions and functions, clear delimitations of the communication lines and interpersonal well-crystallized images, specialization of tasks of the members and structuring a predominant manner of decision-making, crystallization of a system of moving means from one position to another and a distribution relatively durable, constant of the sympathetic relations
These structures have a varying frequency in different social environments – from professions, rural or urban.
Parents love or reject their children, control them or leave them unchecked. After 1960 parental behaviours and their influences started to be studied more; it is certain, however, that the relationship between parent and child acts on the child’s self-consciousness. In an atmosphere excessively severe, with elements of hostility, the children see themselves as unhappy and inferior, have difficulty in giving or receiving affection to others and tend to form a negative image of themselves or have derogating trends from themselves.
Typically, family has a sanogenetic and anti-pathogenic role, for the purposes of solving emotional and sexual issues, needed to maintain mental balance, whilst achieving a secure and protective environment for its members, who are more vulnerable to possible attacks from outside.
The criterion for defining the mental health, social adjustment is a product of the accumulation and condensation in time of interpersonal banning reactions, a process of active integration of the person in the micro-and macro-collectivity where it lives. From the family to school and then to the professional environment, the individual undergoes a series of successive remodelling, has to give up some habits, attitudes, values and interests to continuously acquire new ones, accepted and respected by the social group. „It became essential – considers C. Oancea – for most citizens of an advanced country, to understand a crisis in all its personal, interpersonal and social dimensions, to know how to start a civilized dialogue whose fundamental premises are listening and respect for the interlocutor, to know how to get to a convenient situation of compromise in accordance with the win-win principle.”(C. Oancea, 2002, p.7)
4. Health and healthcare services
With all the effort to optimize the health status and to minimize the dysfunction and disability in the population and individuals, they still exist and probably will continue to constitute a burden on the health and functionality of societies. (Lynch, 2000). We can discuss at this level, the existence of several reasons:
4.1. Uncontrollability of natural acts such as weather and climate disasters;
4.2. Wars and other forms of interpersonal violence;
4.3. Unanticipated adverse effects of the advanced technology or occupational exposures;
4.4. Adverse effects of medical interventions (even if health benefits is net positive);
4.5. Continuously evolving of the body infections;
4.6. Unintended consequences of medical interventions such as the development of antibiotic resistance.
4.7. Uncontrollability of the individual behaviour;
Public health reflects a range of activities finally aimed at reducing morbidity, fatal diseases and promoting the population health as a whole. If, in the past, public health was measured by the relative absence of disease and the concentration of research and practice in public health was on controlling these diseases, quite recently, the definition of health has been reconsidered. WHO describes health as a resource for the aspirations, needs and coping with the changing ambient? (Keyes, 2006)
Health promotion refers to those activities designed to increase individual and family functioning. Achievements in public health procurement, behavioural science and statistics, health promotion programs and prevention of disorders use behavioural and environmental factors to improve the physical and mental functioning. (Wisely JA et al., 2006; Greening, 2005; Berry S, 2004; Aplegate H, 2003; Coie et al., 1993)
At the family level, child development is influenced by family resources and the quality of care and feeding, daily schedule and opportunities to play. These interactions can be altered by different requests in routine or family resources such as illness or other disabilities.
The concept of „preventive intervention” was introduced and popularized in 1950 by Morris F Collen and his colleagues in the „Permanent Medical Group.” (Blau, 2004)
The term of prevention includes the philosophy, beliefs, programs and practices aimed at delaying or eliminating the diseases, disabilities or other forms of human suffering (Wikipedia 2008). However, many diseases and conditions and other sources of human suffering are still unknown or their causes are incompletely known.
Preventive interventions are aimed to prevent or delay youth psychosocial problems operating towards strengthening of health and coping mechanisms, by relieving the early symptoms at the onset of disorders.
In the 1970s, Haggerty introduced the term „new morbidity” including the social challenges on the welfare of children, consisting of the problems associated with poverty, inequality, abuse, parents’ mental illness or disability and other areas (Haggerty et al., 1975). Paediatricians found that 25% of children in primary care experience psychosocial problems, referring to a „hidden morbidity” (Kelleher et al., 2000, Haggerty, 1995 and Costello et al., 1988). Unfortunately, many children with such problems are not identified and therefore do not benefit from the intervention (Reiger et al., 1978). This „hidden morbidity” has serious national implications because children with behavioural and developmental problems, not benefiting from educational programs or other community services, are exposed to an increased risk for psychopathology and even to serious psychiatric disorders (Grigoriu-Şerbănescu et al., 1998; Szilagyi & Schor, 1998) or become excessive users of the health services (Janicki & Finney, 2000).
Child development is an interactive and reciprocal process, extending from the child to the family, community and society level, by which reason, a program of preventive intervention and health promotion should target multiple levels of assistance (Milea, 2006; Bronfenbrenner, 1993). „This is because – says Milea (2006. p.31) – development generally and the mental development in particular is not the same for all children, and does not have a linear upward course, easily extrapolated. Moreover…. some functions can be assessed only later, at school or at puberty and adolescence while some consequences were incubated months and even years.”
Health problems children are facing in this century are very different from those faced by their previous generations (Haggerty, 1995) not only because of the social problems that have replaced many of the infectious diseases (like major cause of morbidity), but especially due to family changes. In many communities, single parent and multi-generational families have replaced the traditional nuclear family with two parents, mother and father; diversity it is also added: ethnicity, gender roles, education and economic resources contribute to the confusion of roles in families with children. (Knitzer, 1993; Sue, 1992)
Families should treat and involve children as partners in solving problems (Epstein et al., 1993), taking into account their needs and assessments should include indicators of satisfaction and quality of life. In most care organizations, management invests particularly for relatively mild forms of behaviour and development problems (Simpson & Fraser, 1999) and psychologists, by the existence of large databases, have the opportunity to develop and assess measurement tools for the quality of life.
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