PREVENTIVE INTERVENTION IN FAMILIES WHERE ONE PARENT SUFFERS FROM A DISEASE OF THE CENTRAL NERVOUS SYSTEM
This study examines the mental and physical health in families with one member suffering from brain injury and its development in the first six months from the first assessment, in relation to the effect of preventive intervention on family members facing a dramatic life situation. Secondly, the research focuses on the observation of the differences between the two groups receiving different forms of intervention. The study included 51 families with a parent with traumatic brain injury, and the data were collected through a Health Survey (SF -8). The psychotrauma of the disease for family members is more complex than it seems, and preventive interventions on families coping with traumatic life situation are lacking. This study has a special informative value, particularly since studies in this area are almost nonexistent.
Introduction
Traumatic brain injury is a shocking life event with significant emotional charge. It may push families into a crisis that can perpetuate and permanently affect their balance if it is not managed appropriately. The complexity of states, feelings and emotions that family members experience are often unbearable and even understandable. To this, one may add the uncertainty, insecurity, and frustration caused by lack of information due to either the sparse information they receive or to misunderstanding it or even to the inability to digest this information.
Typically, they are spectators to an event that took them unawares, requiring their attention in an unfamiliar way and confronting them with a challenge which they know nothing about. The lack of information, of support, and of intervention decreases the ability to cope with situations that a person may face at some point. Under these conditions, preventive intervention on the family and especially on children, which aims at reducing psychological stress and avoiding psychological dysfunction, is a must.
Disease as a life event seems to include, besides parental affection, its reflection in family life, too, and especially in the emotions of the healthy parent (Minnes & al., 2000). The immediate and long-term consequences for family members who are facing such a situation are multiple and varied, from psychological to practical ones concerning the reorganization of family life. Unfortunately, the psychopathology of family members, especially of children living with psychotrauma caused by acute severe craniocerebral trauma of a parent is little known (Marsh & al. , 1998, Finney & Miller , 1999 Curtis & al. , 2000) .
Intervention on the family must have as target the reduction of the extraordinary tension for this type of crisis. Family members should be educated and informed to know all the aspects and consequences of both craniocerebral trauma and of the rehabilitation process. To reduce the risk of psychological disorders, intervention should be initiated as soon as possible. The form that this type of intervention takes is called preventive or psychoprophylactic intervention.
Preventive intervention refers to knowing the causes of diseases and their control in advance (Milea, 2006). There are three levels thereof, namely: primary prevention, which refers to actions carried out prior to the onset of a disorder in order to intercept the causation relationship or to modify its course, secondary prevention, based on early diagnosis and intervention and tertiary prevention, indicating rehabilitation efforts to reduce the residual effects of the disease (Albee & Joffe, 1977).
Primary prevention summarizes the theoretical basis and all the means for preventing the occurrence of all mental, somatic, sensory, neurological, or psychological disorders that are based on psychological dysfunctions (including somatization encountered in children and adolescents). To this end, it addresses both healthy population (in terms of the disorders covered by prevention), or, at most, the vulnerable population but which is prone to disease or isolated symptoms and to all factors able to influence their mental health. Therefore it helps eradicate or at least reduce the number of new cases and, of course, improves quality of the population’s life. (Milea, 2006).
Neglect and misunderstanding of primary prevention increases the risk of both the emergence of psychological disorders and of their multiplication and permanentization. In our case, for example, the support parent can turn from the person who provides support and assistance into a person in need of care.
Ideally, primary prevention should be initiated before symptoms appear. But for this, it is essential that an integrated multidisciplinary service should exist, that should be well- harmonized itself, and also of health services.
Psychoprophylactic intervention can be carried out in several ways, ranging from informing activities to specialised intervention, such as, for example, deep psychological counselling. Methods are not mutually exclusive but can be combined depending on the situation and the moment when the need is identified. It is preferable that the moment of prevention, as the name suggests, should be prior to the occurrence of the critical situation, its role being to anticipate, prevent or avoid such situations.
Children with relatives or parents with Traumatic Brain Injury (TBI), need particular support and advice. Counselling these children should be performed at an adequate level for their understanding, and for the situation and it can be a challenge for any person who normally works with adults (Camplair, Butler, & Lezak, 2003). Families should receive ongoing support and information because both the family and the survivor need support. It is imperative that family members understand that their reactions are normal and that most families facing TBI, experience about the same feelings. They should be well informed about the effects of TBI and receive suggestions and recommendations on the management of patient behaviours. Following these interventions, family members will be better prepared to help the patient to rehabilitate, and much more able to adapt to the effects of TBI (Uomoto & Uomoto, 2005).
Methodology of the survey
Through this study, we aimed to see whether preventive intervention counselling on the family influences its physical and mental health. For this, we constructed the following assumptions:
The first hypothesis assumes that significant differences between time T0 and time T2 will be identified in the proband group, in terms of physical and mental health.
The second hypothesis assumes that there will be differences at T2 between families who received psychological intervention and families who received the information booklet.
The methods of selecting the participants
The present study included 51 families with a parent with an acute disease of the central nervous system. Participants were divided into two groups: proband group (N = 24) and control group (N = 27). Participants were selected from the cases of the Department of Neurosurgery of the “Bagdasar – Arseni” Emergency Hospital. The selection was made out of 145 (100 %) cases, of which 87 (60 %) refused cooperation, and 58 (40 %) agreed to participate and signed the Consent.
The general criteria for inclusion were: 1) for families: residence in Bucharest; to have healthy children aged 6-17 years; to be legally constituted families with both parents alive. 2) for the sick parent: severity of the trauma – score between 3:12 GCS (Glasgow Coma Scale) (3-7 severe, 8-12 medium) from neurosurgical protocol; hospitalization in neurosurgery department, without history of physical or mental health problems and no previous hospitalizations. 3) for the healthy parent: signed consent for participation in the study, a minimum of 4 years of studies; ability to speak, read and write in Romanian language, without physical or mental health problems and no history of previous hospitalizations. 4) for children: somatically healthy, without treatment for psychiatric disorders before the traumatic event; aged 6-17 years, living with both parents, without intellectual disabilities. 5) for self responding children: minimum 4 years of study, ability to speak, read and write in Romanian.
After signing the participation agreement, the families were administered a battery of questionnaires. For this study we limited ourselves to a single questionnaire (SF8), administered in both T0 and T2 times of trial. Questionnaires were completed by the support parent (mother or father, if applicable). Maternal age is between 33 and 58 years (n = 20, M = 40.95, SD = 6.93) and fathers were aged between 33 and 52 years (n = 26 , M = 44.42 , SD = 4.75) .
Between those two moments, the child and support parent from families of the proband group received 4 psychological counselling sessions. These were carried out at baseline, at one month, at three months and at six months. On the other hand, the control group was only handed a brochure especially developed for this purpose. It included information meant to help readers understand the reactions of the support parent and of the child vis- à -vis the disease, and it gave some practical tips to help the target group cope with these reactions.
Tools
For the present analysis we use the data collected through the questionnaire Health Survey (SF -8 ) the version included in Medical Outcomes Health Survey (Ware, Kosinski , Dewey , & Gandek , 2001) which measures the physical and mental quality of life. The aim of building SF8 was to reduce the initial number of items of SF36 and measure each of the eight aspects of health within a single item. Thus, this short, multi – polling form health measuring tool was created. In the version used in this study, healthy parents were asked to assess their own health status of the previous four weeks, on a scale of 5 or 6 points. The questionnaire covers eight aspects of health: physical functioning, physical role role limitations due to physical problems), physical pain, general health, vitality (energy / fatigue), social functioning, emotional role (role limitations due to emotional problems), mental health (psychological distress and mental state of well-being) and two summary scales for physical component and mental component. Good psychometric properties have been reported with reliability coefficients of 0.70 or greater, for each element ( Ware et al, 2001 ) and test – retest reliability ranging from 0.61 – 0.70 ( Ware et al. , 2001).
Materials and methods
The work is an extension of the study conducted within the multicenter international research project COSIP “Children of Somatically Ill Parents”, held in the Child and Adolescent Psychiatry Clinic Bucharest and coordinated by the University of Hamburg.
Results
For data analysis we used the software package SPSS (Statistical Package for Social Science) 20.0.
According to our hypothesis we expect to record an increase in SF8 scores, an increase in scale scores corresponding to the appropriate mental health scale and physical health scale, in families of the proband group at the time T2 compared to time T0. We also expect to find differences in the time T2 between families who received psychological intervention and families who received the information booklet.
We analyzed the physical and mental health of the family in terms of parent support in proband group and in the control group at the time T2 compared to time T0. For the first case we extend the analysis to the control group, too for comparison. Analysis of the two assumptions will be made simultaneously, first for mental health, and then for physical health.
From the point of view of mental health, in the proband group thereis an average value that reflected an increase of scores of M = 36.50 with SD = 10.60 , at T0, and an average of M = 43.33 with SD = 9.31 at T2 ( Table 1 ). The increase is observed in the control group (T0: M = 37.37 SD = 10.63 and T2: M = 45.67 SD = 6.40). We affirm that there is an increase in the score for the mental health, in both groups, suggesting increased mental quality of life of the families.
Table 1 Statistics for SF8 mental component proband versus control at T0 and T2
To see if there is a link between variables we calculated the correlation coefficient between mental scale scores at T0 and scores obtained at T2 (Table 2), for the proband group. We note that this coefficient is statistically significant with values of the significance threshold lower than 0.05. Analyzing the absolute value of the correlation coefficient r, we see that for both the proband group (r = .421, p <.05) and the control group (r = .408, p <.05) correlation coefficient r with average value are obtained, which means that between mental quality at T0 and the quality of mental life at time T2 there is a relationship of average intensity.
Table 2 Correlation coefficients for mental component
We further calculated a t-test statistics for the proband group that allowed us to evaluate the significance of the variation between the two time points (Table 3). We got t = – 3.10 p = 0.005 and M = -6.83 (See table 3). We can say that the differences are significant between the quality of mental life at T0 and mental quality of life at T2, in the sense that when the target individual is at T2, there is an improvement of the quality of mental life.
In the control group t = – 4.34 with p = 0.000 and M = -8.29., p is less than the maximum accepted threshold so that we can say that there are significant differences between the quality of mental life at T0 compared to T2. There is a significant increase in scores of mental quality of life at the time T2, even though the control group only received the information booklet.
Regarding the physical aspect of health (Table 4) in the proband group, we have M = 44.67, SD = 11.56, at T0 and M = 49.13, SD = 8.65 at T2. And in the control group, we have M = 46.67 SD = 11.10, at T0 and M = 52.07 SD = 6.57 at T2. It is observed an increase in scores at the physical component of SF8 at T2 compared to T0, that is equivalent to an increase in physical quality of life of the subjects.
In Table 5 we find the coefficients of correlation between scale scores and scores obtained at the T0 and at T2. Both correlation are statistically significant, having values of the significant threshold less than 0.05. Analyzing the absolute value of the correlation coefficient r, we see that for the proband group, the value r = 0.583. It describes a connection of average intensity. For the control group, correlation coefficients obtained, r = 0.866, have a high value, which means that between the quality of physical life at T0 and quality of physical life at T2, there is a relationship of strong intensity in the control group.
Table 3 T-test for paired samples – the mental component
Table 4 Statistics for SF8 physical component in proband versus control group at T0 and T2
Table 5 Correlation coefficients for the physical component
Table 6 T-test for paired samples – the physical component
We further calculated a t-test statistics (Table 6). For the proband group t = – 2.279 , P = 0.032. We can say that there are significant differences between the physical quality of life at the T0 and physical quality of life at T2. The difference manifests itself in the sense that at T2 an improvement of the physical quality of life is recorded from baseline T0.
In the control group we have t = – 4.433, P = 0.000. p is less than the maximum accepted, therefore we can say that there are significant differences between the quality of physical life at T0 compared to T2. A significant increase in quality of life score is recorded at T2.
Discussions
The aim of the study was to examine the mental and physical health in families with a member with traumatic brain injury and its evolution in the first six months from the first assessment, following the effect of preventive intervention on families.
The study included 51 families, according to inclusion criteria described above. The 51 families were divided into two groups: the control group and the proband group. The division was made according to the criterion of odd-even. Families of the proband group received four counselling sessions, and families in the control group received a booklet with information and advice on the implications of the respective situation.
Mental and physical health of families was assessed by means of a Health Survey (SF -8), version of Medical Outcomes Health Survey ( Ware, Kosinski, Dewey, & Gandek, 2001). The questionnaire was applied at baseline, T0 and after six months, the final time T2.
The information revealed by data analysis are in favour of our hypothesis. More specifically, the increase recorded at T2 compared to T0 is statistically significant in both the scores related to the mental health and the scores corresponding to physical health, both for the proband group and the control group.
For the proband group, the aspect of mental health at T2 records an average M = 43.33 , compared to T0, when the average is M = 36.50 , while the physical health records an average of M = 49.13, at T2 compared to M = 44.67, at T0 .
And the same thing happens in the control group, ie an increase in the average scores as follows: the average mental health score at T2 is M = 45.67 versus M = 37.37 at T0, and the average physical health score increased at T2 to M = 52.07 , from M = 46.67 at T0.
Regarding the score difference between proband group and the control group, a difference which we expected to be in favour of the proband one, was not confirmed after data analysis. The increase occurred for both groups, which would make us conclude that both methods used have had positive results. Both providing information and advice via brochure and counselling sessions have made an improvement on the two aspects of family life.
In other words, we can say that preventive intervention, by its specific forms, is beneficial for families facing a dramatic life situation. It is important that families receive the care, information and support, as close as possible to zero time, i.e. the time of the event, to avoid any consequences thereof.
Given the frequency of severe illnesses in family life, it is necessary to identify subjects who require such interventions [ … ] most of the families in better emotional conditions can be helped through brochures with basic information about acute cerebro-vascular diseases and their care ( Oancea & al . , 2006).
In conclusion, families facing traumatic situations need information, support and help.
effects of preventive intervention on the family, expressed in statistical data analysis, are visible. As such, psychological counselling and information booklet prove useful tools in preventive intervention.
Both intervention methods can be used together or separately, in relation to the capacity of such a service and in accordance with the specific family involved or availability or difficulty to access such a service (e.g., in rural areas access to a counselling service is more difficult) .
Although the need for intervention in such cases is obvious, there is still reluctance on the part of the family (see the large number of refusals). The reasons could be related also to the lack of information and education in this regard.
Despite the quite evident results, the study has some limitations, too. Limits are given by the fact the survey was restricted to only this aspect of family life, other aspects of family life were not considered herein. It might be possible that significant differences between results for the two groups at two points in time could be recorded, in the sense that in other issues such as coping strategies, the state of depression or family functioning, the results could be in favour of the proband group.
Another limitation comes from the fact that the data reflect the influence that the support parent has on the family. As such, data are limited to how the support parent lives the event. It is possible that, in terms of the child or children from such a family, things should look differently. But these analyses are not the subject of the present study.
Bibliography
- Albee GW & Joffe JM (1977). The primary prevention of psychopathology: The issues. Hanover, NH: University Press of New England.
- Camplair PS, Butler RW & Lezak MD (2003). Providing Psychological Services to Families of Brain-Injured Adults and Children in the Present Health-Care Environment. In Clinical Neuropsychology and Cost Outcome Research: A Beginning. Ed. George P. Prigatano & Neil H. Pliski. 83-111.
- Curtiss G & others, (2000). Acute impact of severe traumatic brain injury on family structure and coping responses. Head Trauma Rehabil. 15(5), 1113-22.
- DSM-IV-TR (2003). Manual de diagnostic si statistica a tulburarilor mentale, Bucuresti: Asociatia Psihiatrilor Liberi din Romania.
- Dumitru G (2004). Statistica pentru psihologi. Bucuresti: Ed. Trei.
- Finney JF & Miller KM, (1999). Children with Medical Illness in Developmental issues in the clinical treatment of children.
- Jaba E (2002), Statistica, Ediţia a III-a, Editura Economica, Iasi
- Marsh NV & others, (1998). Caregivers burden at 6 months following severe traumatic brain injury. Brain injury, 12 (3), 225-38.
- Milea S (2006). Profilaxia Primară a Tulburărilor Psihice la Copil şi Adolescent. Editura Ştiinţelor Medicale. Vol. 1, Bucureşti.
- Minnes P, Graffi S, Nolte ML, & Harrick L, (2000). Coping an stress in Canadian family caregivers of persons with traumatic brain injuries. Brain Injury , 14(8), 737-48.
- Oancea C, Stănescu DF, Milea S, Chivu R, Ciobanu S, Niculescu G, Palada F, Popa E, Rotărescu V& Romer G (2006). Dimensiunile intervenţiei preventive de consiliere pentru copiii din familiile cu un părinte având o afecţiune acută severă cerebro-spinală. Revista Româna de Psihiatrie 1-2(8). 51-57
- Uomoto KP, Uomoto JM (2005). Impact of Traumatic Brain Injury on the Family and Spouse. Brain Injury Association of Washington. Accesat: www.biawa.org.
- Ware JE & Kosinski M (2001). SF-36R physical and mental health summary scales: A manual for users of version 1. Second Edition. Lincoln, R.I.: QualityMetric Inc.
- Ware J E, Kosinski M, Dewey JE & Gandek B (2001). How to score and interpret single-item health status measures: A Manual for Users of the SF-8TM Health Survey. Lincoln, R.I.: QualityMetric Inc.