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Family functioning in severe brain injuries: correlations with caregivers’ burden, perceived social support and quality of life a
b
c
Francesco Tramonti , Luca Bonfiglio , Carolina Di Bernardo , c
d
b
Chiara Ulivi , Alessandra Virgillito , Bruno Rossi & Maria Chiara Carboncini
d
a
Clinical Psychology Unit, Neuroscience Department, Azienda Ospedaliero-Universitaria Pisana, Pisa, Italy b
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Neurorehabilitation Unit, Neuroscience Department, Azienda Ospedaliero-Universitaria Pisana, Pisa, Italy c
School of Psychology, Pisa University, Pisa, Italy
d
Severe Acquired Brain Injuries Unit, Neuroscience Department, Azienda Ospedaliero-Universitaria Pisana, Pisa, Italy Published online: 10 Feb 2015.
To cite this article: Francesco Tramonti, Luca Bonfiglio, Carolina Di Bernardo, Chiara Ulivi, Alessandra Virgillito, Bruno Rossi & Maria Chiara Carboncini (2015): Family functioning in severe brain injuries: correlations with caregivers’ burden, perceived social support and quality of life, Psychology, Health & Medicine, DOI: 10.1080/13548506.2015.1009380 To link to this article: http://dx.doi.org/10.1080/13548506.2015.1009380
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Psychology, Health & Medicine, 2015 http://dx.doi.org/10.1080/13548506.2015.1009380
Family functioning in severe brain injuries: correlations with caregivers’ burden, perceived social support and quality of life
Downloaded by [New York University] at 13:25 03 June 2015
Francesco Tramontia*, Luca Bonfigliob, Carolina Di Bernardoc, Chiara Ulivic, Alessandra Virgillitod, Bruno Rossib and Maria Chiara Carboncinid a Clinical Psychology Unit, Neuroscience Department, Azienda Ospedaliero-Universitaria Pisana, Pisa, Italy; bNeurorehabilitation Unit, Neuroscience Department, Azienda OspedalieroUniversitaria Pisana, Pisa, Italy; cSchool of Psychology, Pisa University, Pisa, Italy; dSevere Acquired Brain Injuries Unit, Neuroscience Department, Azienda Ospedaliero-Universitaria Pisana, Pisa, Italy
(Received 6 October 2014; accepted 15 January 2015) Severe brain injuries have long-term consequences on functional status and psychosocial functioning. Family life can be greatly 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 hospitalised patients with severe brain injuries received questionnaires for the evaluation of caregiver burden, family functioning and perceived social support. A semi-structured interview 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 the time-dependent burden than those of sons and daughters, whereas the latter scored higher on the emotional burden. Keywords: brain injuries; caregiver burden; family; quality of life; social support
Introduction Severe brain injuries are conditions caused by different aetiologic factors such as stroke, infections or traumatic accidents (Maas, Stocchetti, & Bullock, 2008). Depending on the size and localisation of the brain damage, physical and cognitive functioning can be variably compromised. Caregiver burden and family distress are usually high (Gan, Campbell, Gemeinhardt, & McFadden, 2006), and the role of family functioning deserves further investigation, also considering 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, examining the differences in caregiver burden due to kinship and family roles. Families undergo significant changes over time in terms of roles and main duties (Carter & McGoldrick, 1999). Nodal and expected events trigger the transition from one phase of the life cycle to another, but unexpected events can interfere with such trajectories of development. Conditions like severe brain injuries, which have typically a sudden onset and impairing consequences, can cause an arrest of the life cycle and can have a different impact on family life according to the age of onset. The available literature on caregiver burden shows mixed results, sometimes reporting a higher burden in *Corresponding author. Email: [email protected] © 2015 Taylor & Francis
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partners, some others finding no significant differences or highlighting qualitative differences in the burden of relatives (Perlesz, Kinsella, & Crowe, 1999). Ranging from coma to significant cognitive dysfunctions, severe brain injuries can greatly modify family life. In conditions like vegetative or minimally conscious states, or 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). Absent or fluctuant responsiveness, apathy or emotional and behavioural dysregulation are indeed common consequences of severe brain injuries, with considerable impact on interpersonal relationships. Such relevant aspects of the condition interact with 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 Olson’s Circumplex model (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 variables play an important role in family adjustment to illness conditions: cohesion can ensure the provision of emotional and instrumental support, while adaptability can favour adaptive changes. Normally, intermediate levels of cohesion and adaptability are optimal, whereas the extremes of enmeshment and disengagement, or rigidity and chaos, can be signs of maladaptive functioning. Nevertheless, the authors posit that the levels of cohesion and adaptability can be driven towards extremes in response to specific circumstances or life cycle events (Olson, 2011). Indeed, previous research findings suggest that severe conditions like brain injuries can be associated with features of extreme family functioning (Curtiss, Klemz, & Vanderploeg, 2000). 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 in any given phase of the life cycle (Rolland, 1994). In this study, we thus evaluated the perception of family cohesion and adaptability in a sample of caregivers of hospitalised patients with severe brain injuries, and we examined the correlations between such variables and caregivers’ burden, quality of life and perceived social support. Method A sample of 30 caregivers was recruited in a hospital-based centre for severe brain injuries from September 2011 to October 2012 (Table 1). The patients were in the acute or sub-acute phase of treatment, and their clinical conditions ranged from vegetative state to minimally conscious state (Table 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 the following dimensions: time-dependent burden, developmental burden, physical burden, social burden and emotional burden (Novak & Guest, 1989). The FACES III questionnaire was administered for the evaluation of family functioning (Olson, 1986). The test consists of two scales for both cohesion and adaptability, one for the real and the other for the ideal version of family functioning. The former is meant to assess how family relationships really are, whereas the items of the latter ask the subjects to state how such relationship should be in their opinion. Scores are grouped according to different cut-offs and, combining the levels of cohesion and
n
10 20 16 8 6
Men Women Partners Adult children Parents
63.22 ± 13.23 55.85 ± 12.12 63.56 ± 9.00 45.37 ± 9.66 61.17 ± 14.20
Mean age 30.17 ± 15.32 34.47 ± 12.77 36.66 ± 11.73 31.69 ± 14.87 27.50 ± 15.83
CBI total scores 22.80 ± 6.03 23.25 ± 6.75 23.69 ± 5.20 22.50 ± 7.85 22.33 ± 8.31
Special person support
Descriptive statistics of caregivers’ sample and mean scores of CBI, MSPSS and SEIQoL.
Subgroups
Table 1.
20.50 ± 6.85 21.50 ± 7.50 20.75 ± 6.68 21.50 ± 7.85 21.83 ± 8.84
Family support
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18.40 ± 7.69 22.60 ± 6.32 20.81 ± 7.46 23.62 ± 4.00 19.00 ± 8.76
Friends support
72.30 ± 21.77 64.82 ± 21.42 66.09 ± 20.87 65.43 ± 22.89 73.67 ± 23.85
SEIQoL scores
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Table 2.
Clinical conditions of the patients.
Patients’ characteristics Sex/gender Mean age Mean length of hospitalisation LCF
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Causes of illness
14 women 60.90 ± 17.79 Three months
16 men Range 19–84 years Range 1–8 months
Eight patients with LCF = 2 22 patients with LCF = 3 (PVS) (MCS) Ischaemic stroke n = 9 Haemorrhagic stroke n = 4 Aneurysm rupture n = 6 Neoplasia n = 1 Herpetic encephalopathy n = 1 Traumatic brain injury n = 9
Notes: LCF – levels of cognitive functioning according to the Rancho Los Amigos level of cognitive functioning scale (Sander, 2002). PVS – persistent vegetative state; MCS – minimally conscious state.
adaptability, three main typologies of family functioning can be identified: balanced, mid-range and unbalanced or extreme families. Social support was measured by the multidimensional scale of perceived social support (MSPSS), which rates the help received from three main sources: the family, a special person and friends (Zimet, Dahlem, Zimet, & Farley, 1988). Caregivers also completed the schedule for the evaluation of individual quality of life (SEIQoL), a semistructured 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 reflecting 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 comparison between different subgroups of caregivers. Results The total scores of the CBI were mostly below the cut-off of 36 (Table 1), which is suggested for identifying conditions of possible distress or burnout. 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 (Figure 1).
Figure 1.
Family typologies according to the FACES III scores.
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The scores of real cohesion (rs = .47; p < .01) and adaptability (rs = .47; p < .01) correlated with those of the SEIQoL. Real adaptability correlated (rs = .40; p < .05) with the Family subscale of the MSPSS, which also correlated (rs = .41; p < .05) with the SEIQoL scores (Table 3). In order to evaluate the role of kinship, we compared spouse caregivers to sons and daughters or parents. On time-dependent burden partners’ scores were significantly higher (z = −2.31; p < .05) than those of adult children, whereas the latter scored higher on the emotional burden (z = −2.23; p < .05) and on the FACES III subscale of ideal adaptability (z = −2.51; p < .05).
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Discussion Despite being moderately high, the average total score of the CBI is not above the cut-off supposed to reveal the conditions of burnout. It should be noted that during hospitalisation, caregivers can rely on the help of health care professionals and their involvement usually increases after discharge, when assistance mostly weighs down the family, with or without the help of social networks and home-based interventions. Furthermore, 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 heavier and prolonged assistance duties. Partner caregivers report a higher time-dependent burden, suggesting a stronger involvement in assistance duties. 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, Garre-Olmo, Turró-Garriga, Vilalta-Franch, & López-Pousa, 2010). 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 expected 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 correlated with social support from the family. Such results are consistent with previous findings on the association between cohesion or adaptability and adjustment to other serious illnesses (Friedman et al., 1988; Tramonti, Barsanti, Bongioanni, Bogliolo, & Rossi, 2014). Despite being preliminary and based on a small sample size, our data confirm that features of extreme family functioning can parallel severe brain injuries and that high levels of family cohesion and adaptability can be related to 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 both the 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
1 .674** .540** .678** .898** .133 .258 −.041 .199 −.273 −.112 −.126 .097 .156
CBI
T-dB
.172 .258 .589** −.238 .256 .027 .229 −.199 −.090 −.251 .057 .183
Correlations.
.097 .493** .268 −.085 −.332 −.070 −.243 .003 .021 .071 −.083
DB
.493** −.016 .299 .022 .012 −.220 −.109 −.157 −.006 .205
PB
.095 .331 .053 .181 −.127 .010 .005 .114 .055
SB
−.186 −.238 −.005 −.356 −.090 .206 −.210 −.216
EB
.251* .240 .250 .185 −.003 .265 .177
SO
.348 .406* .399* .175 .335 .334
Fam
.064 .291 .272 .193 .236
Fri
.473** .158 .473** .117
QoL
.745** .269 .221
RA
.008 .206
IA
.499**
RC
1
IC
Notes: T-dB – time-dependent burden; DB – developmental burden; PB – physical burden; SB – social burden; EB – emotional burden; SO – support from a special person; Fam – support from the family; Fri – support from friends; QoL – SEIQoL scores; RA – real adaptability; IA – ideal adaptability; RC – real cohesion; IC – ideal cohesion. *p < .05 (two-tailed).; **p < .01 (two-tailed).
CBI T-dB DB PB SB EB SO Fam Fri QoL RA IA RC IC
Table 3.
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validations are currently in progress (Olson, 2011). Such a version includes separate scores for positive and negative aspects of cohesion and adaptability, and a recent study on severe brain injuries suggests that balanced families with high levels of cohesion and adaptability are those which show better adjustment (Lehan, Stevens, Arango-Lasprilla, Díaz Sosa, & Espinosa Jove, 2012). In other words, improved psychometric instruments would seem to be more capable of detecting those families which are highly flexible and supportive, without being enmeshed or chaotic.
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References Boss, P., & Greenberg, J. (1984). Family boundary ambiguity: A new variable in family stress theory. Family Process, 23, 535–546. Carter, B., & McGoldrick, M. (1999). The expanded family life cycle. Individual, family and social perspectives (3rd ed.). Boston, MA: Allyn & Bacon. Conde-Sala, J. L., Garre-Olmo, J., Turró-Garriga, O., Vilalta-Franch, J., & López-Pousa, S. (2010). Differential features of burden between spouse and adult-child caregivers of patients with Alzheimer’s disease: An exploratory comparative design. International Journal of Nursing Studies, 47, 1262–1273. Curtiss, G., Klemz, S., & Vanderploeg, R. D. (2000). Acute impact of severe traumatic brain injury on family structure and coping responses. Journal of Head Trauma Rehabilitation, 15, 1113–1122. Friedman, L. C., Baer, P. E., Nelson, D. V., Lane, M., Smith, F. E., & Dworkin, R. J. (1988). Women with breast cancer: Perception of family functioning and adjustment to illness. Psychosomatic Medicine, 50, 529–540. Gan, C., Campbell, K. A., Gemeinhardt, M., & McFadden, G. T. (2006). Predictors of family system functioning after brain injury. Brain Injury, 20, 587–600. Lee, C. (1988). Theories of family adaptability: Toward a synthesis of Olson’s Circumplex and the Beavers systems models. Family Process, 27, 73–85. Lehan, T. J., Stevens, L. F., Arango-Lasprilla, J. C., Díaz Sosa, D. M., & Espinosa Jove, I. G. (2012). Balancing act: The influence of adaptability and cohesion on satisfaction and communication in families facing TBI in Mexico. NeuroRehabilitation, 30, 75–86. Maas, A. I., Stocchetti, N., & Bullock, R. (2008). Moderate and severe traumatic brain injury in adults. The Lancet Neurology, 7, 728–741. Novak, M., & Guest, C. (1989). Application of a multidimensional caregiver burden inventory. The Gerontologist, 29, 798–803. O’Boyle, C. A., McGee, H. M., Hickey, A., Joyce, C. R. B., Browne, J., O’Malley, K., & Hiltbrunner, B. (1993). The schedule for the evaluation of individual quality of life (SEIQoL). Administration manual. Dublin: Royal College of Surgeons in Ireland. Olson, D. H. (1986). Circumplex model VII: Validation studies and FACES III. Family Process, 25, 337–351. Olson, D. H. (2011). FACES IV and the Circumplex model: Validation study. Journal of Marital and Family Therapy, 37, 64–80. Perlesz, A., Kinsella, G., & Crowe, S. (1999). Impact of traumatic brain injury on the family: A critical review. Rehabilitation Psychology, 44, 6–35. Rolland, J. S. (1994). Families, illness and disability. An integrative treatment model. New York, NY: Norton. Sander, A. (2002). The level of cognitive functioning scale. The center for outcome measurement in brain injury. Retrieved from http://www.tbims.org/combi/lcfs Sander, A. M., Caroselli, J. S., High, Jr., W. M., Becker, C., Neese, L., & Scheibel, R. (2002). Relationship of family functioning to progress in a post-acute rehabilitation programme following traumatic brain injury. Brain Injury, 16, 649–657. Tramonti, F., Barsanti, I., Bongioanni, P., Bogliolo, C., & Rossi, B. (2014). A permanent emergency: A longitudinal study on families coping with amyotrophic lateral sclerosis. Families, Systems, & Health, 32, 271–279. Zimet, G. D., Dahlem, N., Zimet, S., & Farley, G. K. (1988). The multidimensional scale of perceived social support. Journal of Personality Assessment, 52, 30–41.
Psychology, Health & Medicine Publication details, including instructions for authors and subscription information: http://www.tandfonline.com/loi/cphm20
Family functioning in severe brain injuries: correlations with caregivers’ burden, perceived social support and quality of life a
b
c
Francesco Tramonti , Luca Bonfiglio , Carolina Di Bernardo , c
d
b
Chiara Ulivi , Alessandra Virgillito , Bruno Rossi & Maria Chiara Carboncini
d
a
Clinical Psychology Unit, Neuroscience Department, Azienda Ospedaliero-Universitaria Pisana, Pisa, Italy b
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Neurorehabilitation Unit, Neuroscience Department, Azienda Ospedaliero-Universitaria Pisana, Pisa, Italy c
School of Psychology, Pisa University, Pisa, Italy
d
Severe Acquired Brain Injuries Unit, Neuroscience Department, Azienda Ospedaliero-Universitaria Pisana, Pisa, Italy Published online: 10 Feb 2015.
To cite this article: Francesco Tramonti, Luca Bonfiglio, Carolina Di Bernardo, Chiara Ulivi, Alessandra Virgillito, Bruno Rossi & Maria Chiara Carboncini (2015): Family functioning in severe brain injuries: correlations with caregivers’ burden, perceived social support and quality of life, Psychology, Health & Medicine, DOI: 10.1080/13548506.2015.1009380 To link to this article: http://dx.doi.org/10.1080/13548506.2015.1009380
PLEASE SCROLL DOWN FOR ARTICLE Taylor & Francis makes every effort to ensure the accuracy of all the information (the “Content”) contained in the publications on our platform. However, Taylor & Francis, our agents, and our licensors make no representations or warranties whatsoever as to the accuracy, completeness, or suitability for any purpose of the Content. Any opinions and views expressed in this publication are the opinions and views of the authors, and are not the views of or endorsed by Taylor & Francis. The accuracy of the Content should not be relied upon and should be independently verified with primary sources of information. Taylor and Francis shall not be liable for any losses, actions, claims, proceedings, demands, costs, expenses, damages, and other liabilities whatsoever or howsoever caused arising directly or indirectly in connection with, in relation to or arising out of the use of the Content.
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This article may be used for research, teaching, and private study purposes. Any substantial or systematic reproduction, redistribution, reselling, loan, sub-licensing, systematic supply, or distribution in any form to anyone is expressly forbidden. Terms & Conditions of access and use can be found at http://www.tandfonline.com/page/termsand-conditions
Psychology, Health & Medicine, 2015 http://dx.doi.org/10.1080/13548506.2015.1009380
Family functioning in severe brain injuries: correlations with caregivers’ burden, perceived social support and quality of life
Downloaded by [New York University] at 13:25 03 June 2015
Francesco Tramontia*, Luca Bonfigliob, Carolina Di Bernardoc, Chiara Ulivic, Alessandra Virgillitod, Bruno Rossib and Maria Chiara Carboncinid a Clinical Psychology Unit, Neuroscience Department, Azienda Ospedaliero-Universitaria Pisana, Pisa, Italy; bNeurorehabilitation Unit, Neuroscience Department, Azienda OspedalieroUniversitaria Pisana, Pisa, Italy; cSchool of Psychology, Pisa University, Pisa, Italy; dSevere Acquired Brain Injuries Unit, Neuroscience Department, Azienda Ospedaliero-Universitaria Pisana, Pisa, Italy
(Received 6 October 2014; accepted 15 January 2015) Severe brain injuries have long-term consequences on functional status and psychosocial functioning. Family life can be greatly 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 hospitalised patients with severe brain injuries received questionnaires for the evaluation of caregiver burden, family functioning and perceived social support. A semi-structured interview 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 the time-dependent burden than those of sons and daughters, whereas the latter scored higher on the emotional burden. Keywords: brain injuries; caregiver burden; family; quality of life; social support
Introduction Severe brain injuries are conditions caused by different aetiologic factors such as stroke, infections or traumatic accidents (Maas, Stocchetti, & Bullock, 2008). Depending on the size and localisation of the brain damage, physical and cognitive functioning can be variably compromised. Caregiver burden and family distress are usually high (Gan, Campbell, Gemeinhardt, & McFadden, 2006), and the role of family functioning deserves further investigation, also considering 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, examining the differences in caregiver burden due to kinship and family roles. Families undergo significant changes over time in terms of roles and main duties (Carter & McGoldrick, 1999). Nodal and expected events trigger the transition from one phase of the life cycle to another, but unexpected events can interfere with such trajectories of development. Conditions like severe brain injuries, which have typically a sudden onset and impairing consequences, can cause an arrest of the life cycle and can have a different impact on family life according to the age of onset. The available literature on caregiver burden shows mixed results, sometimes reporting a higher burden in *Corresponding author. Email: [email protected] © 2015 Taylor & Francis
Downloaded by [New York University] at 13:25 03 June 2015
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partners, some others finding no significant differences or highlighting qualitative differences in the burden of relatives (Perlesz, Kinsella, & Crowe, 1999). Ranging from coma to significant cognitive dysfunctions, severe brain injuries can greatly modify family life. In conditions like vegetative or minimally conscious states, or 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). Absent or fluctuant responsiveness, apathy or emotional and behavioural dysregulation are indeed common consequences of severe brain injuries, with considerable impact on interpersonal relationships. Such relevant aspects of the condition interact with 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 Olson’s Circumplex model (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 variables play an important role in family adjustment to illness conditions: cohesion can ensure the provision of emotional and instrumental support, while adaptability can favour adaptive changes. Normally, intermediate levels of cohesion and adaptability are optimal, whereas the extremes of enmeshment and disengagement, or rigidity and chaos, can be signs of maladaptive functioning. Nevertheless, the authors posit that the levels of cohesion and adaptability can be driven towards extremes in response to specific circumstances or life cycle events (Olson, 2011). Indeed, previous research findings suggest that severe conditions like brain injuries can be associated with features of extreme family functioning (Curtiss, Klemz, & Vanderploeg, 2000). 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 in any given phase of the life cycle (Rolland, 1994). In this study, we thus evaluated the perception of family cohesion and adaptability in a sample of caregivers of hospitalised patients with severe brain injuries, and we examined the correlations between such variables and caregivers’ burden, quality of life and perceived social support. Method A sample of 30 caregivers was recruited in a hospital-based centre for severe brain injuries from September 2011 to October 2012 (Table 1). The patients were in the acute or sub-acute phase of treatment, and their clinical conditions ranged from vegetative state to minimally conscious state (Table 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 the following dimensions: time-dependent burden, developmental burden, physical burden, social burden and emotional burden (Novak & Guest, 1989). The FACES III questionnaire was administered for the evaluation of family functioning (Olson, 1986). The test consists of two scales for both cohesion and adaptability, one for the real and the other for the ideal version of family functioning. The former is meant to assess how family relationships really are, whereas the items of the latter ask the subjects to state how such relationship should be in their opinion. Scores are grouped according to different cut-offs and, combining the levels of cohesion and
n
10 20 16 8 6
Men Women Partners Adult children Parents
63.22 ± 13.23 55.85 ± 12.12 63.56 ± 9.00 45.37 ± 9.66 61.17 ± 14.20
Mean age 30.17 ± 15.32 34.47 ± 12.77 36.66 ± 11.73 31.69 ± 14.87 27.50 ± 15.83
CBI total scores 22.80 ± 6.03 23.25 ± 6.75 23.69 ± 5.20 22.50 ± 7.85 22.33 ± 8.31
Special person support
Descriptive statistics of caregivers’ sample and mean scores of CBI, MSPSS and SEIQoL.
Subgroups
Table 1.
20.50 ± 6.85 21.50 ± 7.50 20.75 ± 6.68 21.50 ± 7.85 21.83 ± 8.84
Family support
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18.40 ± 7.69 22.60 ± 6.32 20.81 ± 7.46 23.62 ± 4.00 19.00 ± 8.76
Friends support
72.30 ± 21.77 64.82 ± 21.42 66.09 ± 20.87 65.43 ± 22.89 73.67 ± 23.85
SEIQoL scores
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Table 2.
Clinical conditions of the patients.
Patients’ characteristics Sex/gender Mean age Mean length of hospitalisation LCF
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Causes of illness
14 women 60.90 ± 17.79 Three months
16 men Range 19–84 years Range 1–8 months
Eight patients with LCF = 2 22 patients with LCF = 3 (PVS) (MCS) Ischaemic stroke n = 9 Haemorrhagic stroke n = 4 Aneurysm rupture n = 6 Neoplasia n = 1 Herpetic encephalopathy n = 1 Traumatic brain injury n = 9
Notes: LCF – levels of cognitive functioning according to the Rancho Los Amigos level of cognitive functioning scale (Sander, 2002). PVS – persistent vegetative state; MCS – minimally conscious state.
adaptability, three main typologies of family functioning can be identified: balanced, mid-range and unbalanced or extreme families. Social support was measured by the multidimensional scale of perceived social support (MSPSS), which rates the help received from three main sources: the family, a special person and friends (Zimet, Dahlem, Zimet, & Farley, 1988). Caregivers also completed the schedule for the evaluation of individual quality of life (SEIQoL), a semistructured 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 reflecting 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 comparison between different subgroups of caregivers. Results The total scores of the CBI were mostly below the cut-off of 36 (Table 1), which is suggested for identifying conditions of possible distress or burnout. 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 (Figure 1).
Figure 1.
Family typologies according to the FACES III scores.
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The scores of real cohesion (rs = .47; p < .01) and adaptability (rs = .47; p < .01) correlated with those of the SEIQoL. Real adaptability correlated (rs = .40; p < .05) with the Family subscale of the MSPSS, which also correlated (rs = .41; p < .05) with the SEIQoL scores (Table 3). In order to evaluate the role of kinship, we compared spouse caregivers to sons and daughters or parents. On time-dependent burden partners’ scores were significantly higher (z = −2.31; p < .05) than those of adult children, whereas the latter scored higher on the emotional burden (z = −2.23; p < .05) and on the FACES III subscale of ideal adaptability (z = −2.51; p < .05).
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Discussion Despite being moderately high, the average total score of the CBI is not above the cut-off supposed to reveal the conditions of burnout. It should be noted that during hospitalisation, caregivers can rely on the help of health care professionals and their involvement usually increases after discharge, when assistance mostly weighs down the family, with or without the help of social networks and home-based interventions. Furthermore, 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 heavier and prolonged assistance duties. Partner caregivers report a higher time-dependent burden, suggesting a stronger involvement in assistance duties. 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, Garre-Olmo, Turró-Garriga, Vilalta-Franch, & López-Pousa, 2010). 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 expected 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 correlated with social support from the family. Such results are consistent with previous findings on the association between cohesion or adaptability and adjustment to other serious illnesses (Friedman et al., 1988; Tramonti, Barsanti, Bongioanni, Bogliolo, & Rossi, 2014). Despite being preliminary and based on a small sample size, our data confirm that features of extreme family functioning can parallel severe brain injuries and that high levels of family cohesion and adaptability can be related to 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 both the 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
1 .674** .540** .678** .898** .133 .258 −.041 .199 −.273 −.112 −.126 .097 .156
CBI
T-dB
.172 .258 .589** −.238 .256 .027 .229 −.199 −.090 −.251 .057 .183
Correlations.
.097 .493** .268 −.085 −.332 −.070 −.243 .003 .021 .071 −.083
DB
.493** −.016 .299 .022 .012 −.220 −.109 −.157 −.006 .205
PB
.095 .331 .053 .181 −.127 .010 .005 .114 .055
SB
−.186 −.238 −.005 −.356 −.090 .206 −.210 −.216
EB
.251* .240 .250 .185 −.003 .265 .177
SO
.348 .406* .399* .175 .335 .334
Fam
.064 .291 .272 .193 .236
Fri
.473** .158 .473** .117
QoL
.745** .269 .221
RA
.008 .206
IA
.499**
RC
1
IC
Notes: T-dB – time-dependent burden; DB – developmental burden; PB – physical burden; SB – social burden; EB – emotional burden; SO – support from a special person; Fam – support from the family; Fri – support from friends; QoL – SEIQoL scores; RA – real adaptability; IA – ideal adaptability; RC – real cohesion; IC – ideal cohesion. *p < .05 (two-tailed).; **p < .01 (two-tailed).
CBI T-dB DB PB SB EB SO Fam Fri QoL RA IA RC IC
Table 3.
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6 F. Tramonti et al.
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validations are currently in progress (Olson, 2011). Such a version includes separate scores for positive and negative aspects of cohesion and adaptability, and a recent study on severe brain injuries suggests that balanced families with high levels of cohesion and adaptability are those which show better adjustment (Lehan, Stevens, Arango-Lasprilla, Díaz Sosa, & Espinosa Jove, 2012). In other words, improved psychometric instruments would seem to be more capable of detecting those families which are highly flexible and supportive, without being enmeshed or chaotic.
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