FAMILY FUNCTIONING IN SEVERE BRAIN INJURIES AND ITS ASSOCIATION WITH CAREGIVERS’ BURDEN, PERCEIVED SOCIAL SUPPORT AND QUALITY OF LIFE Francesco Tramonti1, Luca Bonfiglio4, Carolina Di Bernardo2, Chiara Ulivi2, Alessandra Virgillito3, Bruno Rossi4, Maria Chiara Carboncini3
1Clinical Psychology Unit, Neuroscience Department, Azienda Ospedaliero-Universitaria Pisana 2Pisa University
3Severe Acquired Brain Injuries Unit, Neuroscience Department, Azienda Ospedaliero-Universitaria Pisana
4Neurorehabilitation Unit, Neuroscience Department, Azienda Ospedaliero-Universitaria Pisana Corresponding author: [email protected]
Abstract
Severe brain injuries have long term consequences on functional status and psychosocial functioning. Family life can be deeply influenced as well, and features of high caregiver burden can emerge. Although the data on caregivers’ distress are constantly increasing, less information is available about the role of family functioning.
Thirty caregivers of hospitalized patients with severe brain injuries were administered questionnaires for the evaluation of caregiver burden (CBI), family functioning (FACES III) and perceived social support (MSPSS). A semi-structured interview (SEIQoL) was performed for the evaluation of quality of life.
Family cohesion and adaptability positively correlated with caregivers’ quality of life and perceived social support. Partner caregivers’ scores were significantly higher on time-dependent burden than those of sons and daughters, whereas the latter scored higher on the emotional burden.
Family cohesion and adaptability show significant associations with caregivers’ quality of life and perceived social support. Theoretical and methodological implications of such findings are discussed.
Introduction
Severe brain injuries are conditions caused by different etiologic factors such as stroke, infections or traumatic accidents (Maas, Stecchetti, & Bullock, 2008). Depending on the size and localization of the brain damages, physical and cognitive functioning can be variably compromised, and medical complications can occur. Limitations in motor functioning, emotional and behavioural dysregulation, as well as absent or fluctuant responsiveness, are common consequences of severe brain injuries, with a significant impact on quality of life and interpersonal relationships. Caregiver burden and family distress are usually high (Gan et al., 2006) and the role of family functioning deserves further investigation, also considering that the available data seem to confirm its positive impact on rehabilitation outcomes (Sander et al., 2002). Further investigation is also needed to evaluate the impact of brain injuries on the family life cycle, taking into account the differences in caregiver burden due to kinship and family roles.
Families undergo significant changes across time in terms of roles, duties and relationships among the generations (Carter & McGoldrick, 1999). Nodal events trigger the transition from one phase of the life cycle to another, as in case of expected events like the birth of a child and the transition to parenthood. On the other hand, unexpected events like the onset of a disease condition can impact the family life cycle and interfere with its development. Conditions like severe brain injuries, which have typically a sudden onset and impairing consequences, can cause an arrest in the life cycle and can have a different impact in terms of family relationships and caregiver burden, according to the age of onset and kinship. The available literature shows mixed results, sometimes reporting a higher burden in partners, some others finding no significant differences or highlighting qualitative differences in the burden of relatives (Perlesz, Kinsella, & Crowe, 1999).
modify family life. When neuropsychological functioning is compromised, relatives can feel the upsetting sensation of an ambiguous loss, where the physical presence of the ill family member is not paralleled by a psychological integrity or an active participation in relational and social life (Boss & Greenberg, 1984). As emphasised in the Family Systems Illness Model, such relevant aspects of the condition interact with variables of family functioning and with time, both in terms of disease evolution and of personal or family life cycle (Rolland, 1994).
Among the variables of family functioning, cohesion and adaptability are key factors first conceptualised in the Circumplex model by Olson and colleagues (Olson, 1986). Cohesion is defined as the closeness and emotional bonding between family members, whereas adaptability refers to the proneness to change roles and rules. Both the variables play an important role in family adjustment to illness conditions, since cohesion can ensure the provision of emotional and instrumental support, while adaptability can favour adaptive changes. According to the model, intermediate levels of both cohesion and adaptability are usually optimal, whereas the extremes of enmeshment and disengagement on the one hand, and rigidity or chaos on the other, can be signs of maladaptive family functioning. Nevertheless, the authors posit that the levels of cohesion and adaptability can be driven toward the extremes in response to specific circumstances or life cycle events (Olson, 2011).
In fact, previous research findings suggest that severe diseases like brain injuries and other serious and impairing conditions can be related to features of extreme family functioning (Curtiss, Klemz, & Vanderploeg, 2000; Tramonti et al., 2014). Such findings suggest that special attention should be paid to how specific diseases can influence family functioning according to their evolution and to the psychological demands they pose on the family in any given phase of the life cycle (Rolland, 1994). In the present study we thus evaluated the perception of family cohesion and adaptability in a sample of caregivers of hospitalized patients with severe brain injuries, and we examined the associations between such variables and caregiver burden, quality of life and perceived social support.
Method
A sample of 30 caregivers (Tab. 1) was recruited in a hospital-based Centre for severe brain injuries from September 2011 to November 2012. All the patients were in the acute or sub-acute phase of treatment, and their clinical conditions ranged from vegetative state to minimally conscious state (Tab. 2). Most of the families (28) lived within a distance of 50 kilometres from the hospital. Caregivers completed the Caregiver Burden Inventory (CBI), a questionnaire providing a total score and separate scores on five dimensions of caregiver burden: Time-dependent Burden, Developmental Burden,
Physical Burden, Social Burden and Emotional Burden (Novak & Guest, 1989). Higher scores define higher caregiver burden and a cut-off of 36 is suggested for identifying conditions of possible distress and burn-out.
The FACES III questionnaire was administered for the evaluation of family functioning (Olson, 1986). The test is based on the Circumplex model and provides two scores for both cohesion and adaptability, one for the real and the other for the ideal version of family functioning. The items describing the real family functioning are meant to assess how family relationships are, whereas those referring to the ideal functioning ask the subjects to state how such relationship should be in their opinion. The scores are grouped according to different cut-offs and, combining the scores of cohesion and adaptability, three main typologies of family functioning can be identified: balanced, mid-range and unbalanced or extreme families.
Social support was measured with the Multidimensional Scale of Perceived Social Support (MSPSS), which evaluates the help received from three main sources: the family, a special person and friends (Zimet et al., 1988). Caregivers also completed the Schedule for the Evaluation of Individual Quality of Life (SEIQoL), which is a semi-structured interview for the evaluation of quality of life (O’Boyle et al., 1993). Subjects are asked to list the most important areas of their lives and to assess
their relative importance and present satisfaction. A total score ranging from 0 to 100 is collected, with higher scores defining better quality of life. Bivariate correlations (Spearman’s R) between the scores of all the scales or subscales were calculated, and the Wilcoxon test was performed for the comparisons between different subgroups of caregivers.
Results
The total scores of the CBI were mostly below the cut-off of 36 (Tab. 1). With respect to family typologies, according to the scores of real family functioning most of the families were balanced or mid-range, whereas according to the ideal scores the extreme families rose to 50% of the sample (Fig. 1).
The scores of both real cohesion (rs = 0.437; p < .05) and adaptability (rs = 0.473; p < .01)
showed positive correlations with those of the SEIQoL. Real adaptability also correlated with the
Family subscale of the MSPSS (rs = 0.399; p <.01). A further correlation between the SEIQoL and (rs =
0.406; p < .05) family support was found (Tab. 3).
In order to evaluate the role of kinship, we compared spouse caregivers to sons and daughters or parents. On the CBI subscale Time-dependent burden, partners’ scores were significantly higher (z = -2.308; p < .05) than those of adult children, whereas the latter scored higher on the Emotional burden (z = -2.226; p < .05) and on the FACES III subscale of ideal adaptability (z = -2.513; p < .05).
Discussion
Despite being moderately high, the average total score of the CBI is not above the cut-off that reveals the risk of burn-out. It has to be noted that during hospitalization caregivers can rely on the help of health-care professionals. Although caregivers are usually involved in the assistance even in this phase
of treatment, their involvement usually increases after discharge, when the assistance mostly weighs down the family, with or without the help of social networks and home-based interventions. The clinical conditions of the patients have to be taken into account as well. Although the emotional impact of vegetative and minimally conscious states on caregivers can be obviously remarkable and psychologically demanding, fully conscious patients with neuropsychological disorders can necessitate of heavier and prolonged assistance duties.
With respect to kinship, partner caregivers report a higher time-dependent burden, suggesting a stronger involvement in assistance duties. On the other hand, adult children report a higher emotional burden and a stronger desire for family adaptability. These findings are consistent with similar results from studies on dementia, where the perception of a role-reversal and the feelings of guilt due to coexisting and competing duties have been identified as factors that might place an additional strain on adult child caregivers (Conde-Sala et al., 2010).
As far as family typologies are concerned, according to the Circumplex model definitions we can observe a high number of extreme families in the ideal versions of the FACES III. High levels of family cohesion and adaptability seem thus to be awaited and desired by our study population, and the correlations show positive associations between such patterns of family functioning and markers of psychological adjustment. In the real versions, both cohesion and adaptability are positively correlated with caregivers’ quality of life, and adaptability is also positively correlated with perceived social support from the family.
Such results are consistent with previous findings on the association between cohesion or adaptability and adjustment to serious illnesses. Positive correlations between family cohesion and markers of psychological well-being of both patients and other family members were found in studies on breast cancer and motor neuron diseases (Friedman et al., 1988; Tramonti et al., 2014). Adaptability is also considered a key variable for family adjustment to stressful events, especially during the crisis
phase. In terms of disease evolution, the crisis phase is the one which requires special skills of flexibility in order to allow the family to face the changes in roles and routines caused by serious diseases, especially by those that, like brain injuries, have a sudden onset (Rolland, 1994).
Despite being preliminary and based on a small sample size, our data confirm that severe brain injuries can be paralleled by features of extreme family functioning and that high levels of family cohesion and adaptability can be associated with positive markers of adaptation, although the risks they can entail should be monitored in clinical settings and future research. Moreover, some concerns regarding the psychometric properties of the FACES III questionnaire were reported. In detail, the correspondence between high scores on the cohesion subscale and actual features of enmeshment was discussed, as well as the curvilinear nature of the adaptability variable (Lee, 1988). This means that further investigation is needed for a correct interpretation of high scores on the cohesion and adaptability scales. Such concerns were addressed in a recent revision of the Circumplex model, and a new version of the FACES questionnaire has been constructed and its translations and validations are currently in progress (Olson, 2011). Such a version includes separate scores for positive and negative aspects of cohesion and adaptability, and the available data in the TBI literature suggest that, when properly identified, balanced families with high levels of cohesion and adaptability are those which show better adjustment (Lehan et al., 2012). In other words, better psychometric instruments seem to be more capable of detecting those families which are flexible and supportive, without being enmeshed or chaotic.
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