The effects of caregiver's burden on dynamic structure in disorder of consciousness families: An observational study

Abstract Introduction Disorder of consciousness is a clinical condition due to severe brain damage. The impact of consciousness disorder on the family is characterized by a combination of biopsychosocial factors. The burden and suffering perceived by caregivers can cause psychological distress characterized by anxiety, depression, and physical illness. The aim of the study was to investigate the interaction between family dynamics and caregiver burden. Methods We enlisted 35 caregivers of subjects in a minimally conscious state. Two skilled psychologists administered the Olson's Adaptability and Family Cohesion Assessment Scale and the Novak's Burden Inventory Caregiver Scale to assess family function and family burden, respectively. Results We found that the caregiver burden correlates with the family adaptability and cohesion, as well as with enmeshment, rigidity, and disengagement. Conclusion Findings suggest that the traumatic event does not affect the family structure. Families are able to maintain a balanced functioning and control distress.

. In some cases, family members are not able to accept the condition of their loved ones and may experience psychosomatic disturbances, insomnia, loss of appetite, anxiety, anger, and aggressiveness (Chiambretto et al., 2001;Ho et al., 2009;Jacobs et al., 1986). According to a biopsychosocial theory, it is important to consider the needs of caregivers because they are a resource for patient care. Indeed, the burden due to care of patients with chronic illness involves physical, psychological, emotional, social, and financial aspects. Moreover, it is often characterized by anxiety, depression, and physical illness (Bayen et al., 2013;Leggett et al., 2010;Leonardi et al., 2012).
In this scenario, it becomes necessary to adopt a new clinical approach, systemic, that allows to understand how a family can modulate stress in critical moments through its interior dynamics. The way each family handles a crisis affects the adaptation processes, and therefore, the psychosocial well-being of all family members.
Family functioning refers to the social and structural quality of the family environment, including conflict and cohesion among family members, and also adaptability, organization, and communication. The family functioning aims to integrate various characteristics of the family, consider the family as a system, and examine the overall functioning of such a system. Thus, each member contributes to the family functioning, and after a traumatic event that led to an MCS condition in a family member, the whole family goes through different phases (Cigoli & Mariotti, 2002;Leibach et al., 2014), from denial to reorganization, up to the acceptance of the situation and the creation of a new equilibrium (Lezak 1988;Rolland & Walsh, 2005;Tzidkiahu et al., 1994). Therefore, the event as the clinical condition of the patient as an MCS can affect family balances through the combination of biopsychosocial factors, arising also in care management.
The purpose of this study was to investigate adaptability and cohesion of the families in a sample of primary caregivers of MCS patients, assessing the possible correlation between family functioning and the caregiver burden.  Note: Median (I-III quartile) were used to describe continuous variables; frequencies (percentages) were used to describe categorical variables.

Assessment
Two skilled psychologists administered the Italian version of the two following instruments: Family Adaptability and Cohesion Evaluation Scale (FACES-IV) by Olson and Caregiver Burden Inventory (CBI) by Novak (1989).
The FACES-IV (Visani et al., 2004) is a self-report interview measuring the family aspect assessment in terms of cohesion and adaptability in order to identify the facilitating dimension of a functional family and the feeling of closeness and attachment of family members to each other. The used version included six scales (two balanced and four unbalanced) of seven items each, making 42 items, according to Circumplex Model of Olson, that is, a circumplex ratio score ranging from 0 (worst) to 10 (best). A score ⩾1 indicates balanced levels of cohesion and flexibility in the system. In addition, 10 items assess the level of family communication with the Family Communication Scale, and 10 items assess the level of family satisfaction along the Family Satisfac-

Statistical analysis
Continuous variables were expressed as mean ± SD or median (I-III

Descriptive analysis
As shown in Table 1, around 69% of participants were female, 31-72 years aged (median age of 55 years), and with a medium level of education. About 80% were married or lived with a partner, and 89% lived with an MCS patient. Notably, almost the whole sample (94%) included a direct family member caring for an MCS patient. No significant differences in CBI scores between women and men emerged, as well as when we grouped by marital status. We found a significant association between the relationship with the patient and the marital status (χ 2 (6) = 15.90, p = .01) and the cohabitation with him/her (χ 2 (3) = 17.75, p < .001). Indeed, about half of the samples (48.6%) were the spouses of the patients.
Concerning the perception of the family dimensions, we found low levels of cohesion, and medium level of flexibility, as reported in Table 1.

Spearman correlation analysis
As shown in Figure 1, many moderate correlations between CBI scores and the FACES-IV subitem scores emerged. In particular, we observed a negative correlation between the burden and flexibility (r = -0.35; p = .04), as well as positive correlations between the burden and disengagement (r = 0.37; p = .02), enmeshment (r = 0.33; p = .04), and rigidity (r = 0.37; p = .03).

Multiple regression analysis
Results in Table 2 showed that the burden was a significant predictor for three FACES-IV subscales: flexibility, enmeshment, and rigidity.

DISCUSSION
In this study, we investigated how different family characteristics could influence the way to deal with the MCS situation of a family member.
Contrary to our hypothesis, this study showed good levels of cohesion and flexibility correlated with a high level of burden in the family structures. This suggests a facilitating in management within the family. The correlation between high levels of enmeshment and low burden suggests that the more the family is involved, the more difficult is to manage the burden. However, standard values of communication and satisfaction, together with low levels of disorganization, lead us to consider a balanced functioning within the family structure, reflecting the member's ability to listen, respect, and attention.
Few studies examine aspects of family functioning in brain injured patients, especially during the rehabilitative training (Maggio et al., 2018;Kreutzer et al., 2016), although many studies concern the burden of caregivers and the benefit due to suitable psychological training.
For instance, Corallo et al. (2018) studied the changes that occur in the caregivers after psychological support provided during the hospitalization of the patient at the postacute rehabilitation unit.
Previous studies showed that family members could develop fantasies about the patient's state of awareness, interpreting spastic movements or reflexes as improvement signs (Tzidkiahu et al., 1994).
It has been observed that the protracted assistance causes caregivers psychosomatic disorder, insomnia, and lack of appetite. Leonardi et al.  well as subjective dimension, arguing that it is impossible to distinguish interpersonal level, such as self-perception in relation to the environment or interpersonal relations with the patients, from intrapersonal level with anxiety and depression symptoms, general mental health, and others. Soeterik et al. (2018) analyzed the reaction of a sample of women caring for relatives with disorder of consciousness, observing that the condition created uncertainty in their lives and their future as a wife and/or mother.
In another previous study, Corallo, Bonanno, Lo Buono, et al. (2015) described aspects affecting the crisis of the family system as the unpredictability of the accident, the risk for death of the relative and efforts to accept his/her behavioral disorders, frustrations related to the long recovery times, and last but not least, financial difficulties. In contrast, the families included in our sample reflected balanced functioning, able to adapt to new events by balancing extreme behaviors, and independence and connection between family members. Moreover, our findings showed that the caregiver's burden was negatively correlated with rigidity and disengagement. This could be probably due to the long time spent with patients, which restricted the time for themselves.
The main limitations of the study are the small sample size and its cross-sectional design. Indeed, the small sample size may not enable us to generalize our findings, whereas a longitudinal study could allow a clear assessment of any temporal relationships between caregiver's burden and family dynamic to justify the inferences, for example, it might be that the level of burden improves over time in relation to disease duration or length of the hospitalization. Similarly, with a control group it could determine the effectiveness of a family-centred intervention specific for caregivers. However, the most recent literature supports our findings also in a two-armed randomized controlled trial (Rasmussen et al., 2021). Further large-scale studies should be carried out to confirm or contradict our findings and hypothesis, for example, investigating differences due to specific characteristics as the family relation, the etiology or the side of injury, the level of cognitive impairment, and the length of the hospitalization.

CONCLUSION
Moderate correlations of cohesion and flexibility with level of burden suggest that the traumatic event does not affect the family structure.
Family members are able to maintain the roles within the family system, controlling distress.

ACKNOWLEDGMENTS
The authors thank Rosano Mariagrazia and Visani Enrico for the assistance in the scoring of FACES IV test. This study was supported by Italian Health Minister (GR-2013-02359341).