https://orcid.org/0000-0002-5549-4277
ABSTRACT
Primary Objective: To investigate the level of agreement and differences regarding the perception of family functioning between patients with acquired brain injury and their partners. Our hypothesis was that patients would report better family functioning than their partners.
Research Design: Cross-sectional study
Methods and Procedures: Baseline data were used from 77 patient-partner dyads (87.0% stroke) who were participating in the ongoing CARE4Patient and CARE4Carer trials. Family functioning was assessed using the General Functioning subscale of the McMaster Family Assessment Device (FAD-GF). Agreement was assessed with intraclass correlation coefficient, a Bland-Altman plot, percentages absolute agreement and weighted kappa values. Differences were tested with Wilcoxon signed-rank tests.
Main Outcomes and Results: Patients and their partners differed in their perception of family functioning. Within-dyad agreement was poor regarding the overall FAD-GF scores with partners reporting significantly poorer family functioning compared to the patients (32.5% versus 18.2%). Agreement regarding the individual items ranged from slight to moderate.
Conclusions: Health care professionals should assess family functioning after stroke in both patients and their partners, and any discrepancies should be discussed with both members of the patient-partner dyad.
Introduction
Patients with acquired brain injury (ABI) typically suffer from complex problems, affecting both themselves and their caregivers. These may include physical, behavioral, cognitive, communicative and psychosocial problems, which can lead to loss of independence in everyday activities, reduced societal participation and poorer quality of life (Citation1).
After inpatient care, most patients with stroke eventually return to their own home, and about 70% will be dependent on informal caregivers, usually family members (Citation2). The burden of care has a great impact on caregivers’ physical and psychosocial well-being (Citation2,Citation3) with up to 65% of caregivers reporting health problems, high levels of strain and a decline in the quality of their social life (Citation4). Among caregivers, partners in particular have difficulties coping with the consequences of a brain injury (Citation5). Partners experience a sense of loss and need to adjust to a new relationship with the patient (Citation6,Citation7).
Changes in the relationship, lack of social support and changed roles of patients and partners may result in conflict, stress or even separation (Citation5,Citation7). Both patients and caregivers experience negative consequences and there is an interdependent effect between patients with stroke and their caregivers on outcomes such as stress and quality of life (Citation8,Citation9).
Family-centered interventions, aimed at both patients and caregivers, can result in better outcomes for the individual members of the dyad (Citation10–Citation12). Evidence for outcomes concerning both members of the dyad together, such as family functioning, is still scarce. Family functioning comprises how family members work together and communicate with each other (Citation13). In patients with ABI, a negative perception of family functioning is associated with more depressive symptoms (Citation14), lower levels of activity (Citation15), and increased dependence in daily self-care (Citation15) and home activities (Citation16). Poor family functioning, as perceived by caregivers, is associated with increased symptoms of anxiety and depression (Citation13,Citation17–Citation21).
After an ABI, family functioning is often only assessed in caregivers, since patients may suffer from cognitive and communicative disorders (Citation11). Whether such a single measure is a valid representation of the perspectives of both members of the dyad is not clear, since little is known about the level of agreement and differences regarding perceived family functioning within dyads. To our knowledge, only two studies have reported on family functioning as perceived by both members of the patient-caregiver dyad, and their results are conflicting. One study found that patients reported better family functioning than their partners (Citation22), while another study found the opposite (Citation13). These contradictory results may be attributable to differences in the population they studied, e.g. the first study included only male patients and female partners, while the second study included not only partners but also other caregivers.
The further development of family-centered interventions for patients with ABI and their partners requires insight into the agreement about and differences in family functioning between these patients and their partners.
The objective of the present study was to examine how patients with ABI and their partners perceive their family functioning and to investigate agreement and differences regarding their perception of family functioning. We hypothesized that patients would report better family functioning than their partners.
Materials and methods
Design
For this cross-sectional investigation, data from two randomized controlled trials, CARE4Carer (NTR6197) and CARE4Patient (NTR5055), were combined. Designs, inclusion and exclusion criteria and trial interventions have been described in detail elsewhere and are briefly summarized here (Citation23–Citation25). The medical ethics committee of the University Medical Center Utrecht approved the CARE4Carer study. The CARE4Patient study was approved by the medical ethics committee of the Slotervaart Hospital and Reade. Reporting in this cross-sectional study follows the STROBE statement (Citation26).
Participants
In the ongoing CARE4Carer trial, patients with ABI (mostly stroke) and their partners are recruited during outpatient rehabilitation from hospitals and rehabilitation centers in the Netherlands. In the CARE4Patient trial, patients with ABI (mostly stroke) and their caregivers were recruited during inpatient rehabilitation from rehabilitation centers and nursing homes in the Netherlands. For the purpose of this study, only patient-partner dyads were selected. Participants, recruited until the end of 2018, were included in the current study. Inclusion criteria for patients and partners in both trials included: (1) aged 18 years or older, and (2) able to understand Dutch. Inclusion criteria for patients included: (1) having an ABI, and (2) living independently prior to the injury. Patients with neurodegenerative or progressive ABI were excluded from both trials. Additional in- and exclusion criteria were specified to ensure safety or determine suitability for the experimental interventions of the trials. Additional inclusion criteria for patients in the CARE4Patient trial were: (1) planned to be discharged home, (2) able to follow instructions (Mini-Mental State Examination > 18), (3) having limited mobility (Functional Ambulation Category < 5), and (4) no significant symptoms of depression (depression subscale of the Hospital Anxiety and Depression Scale ≥ 11). In addition, patients and partners were excluded from CARE4Patient if they reported a serious comorbidity that interfered with participation or were medically unstable. Partners were excluded from the CARE4Carer trial if they: (1) were unable to use a computer, or (2) had no internet access. All participants gave written informed consent.
Measurements
In this study, we used baseline data from patients and partners participating in the CARE4Patient and CARE4Carer trials. Baseline measurements for CARE4Patient were taken during inpatient rehabilitation and those for CARE4Carer during outpatient rehabilitation.
Family functioning was assessed using the General Functioning subscale of the McMaster Family Assessment Device (FAD-GF) (Citation27). Patients and partners indicated their level of agreement (i.e., strongly disagree, disagree, agree, strongly agree) with 12 statements. Each statement was scored from 1 to 4, with higher scores reflecting poorer family functioning. A mean score of 2.0 or higher is defined as ineffective family functioning (Citation28). The Family Assessment Device (FAD) has good psychometric properties (Citation27–Citation29). The FAD-GF has good reliability and validity (Citation30) and the Dutch translation has good internal consistency (Citation31).
Patient and partner characteristics included demographics (age, sex, education, and employment), type of ABI, first or recurrent stroke, time since injury, being inpatient at a rehabilitation facility or living at home, communicative ability, anxiety and depression, and caregiver burden. Level of education was dichotomized into ‘higher education’ if participants had completed at least upper-level secondary school, and ‘lower education’ if they had completed lower-level secondary school or less. Communicative ability of the patients was dichotomized into presence or absence of communication restrictions, as indicated by a score of 3 or less on the Utrecht Communication Observation (UCO) (Citation32). Anxiety and depression among both patients and partners were assessed using the Hospital Anxiety and Depression Scale (HADS) (Citation33). The HADS consists of a 7-item anxiety and a 7-item depression subscale. Subscale scores above 7 suggest a mood disorder. Caregiver burden was assessed among partners with the Caregiver Strain Index (CSI) (Citation34,Citation35). The CSI consists of 13 items which can be scored as ‘yes’ or ‘no’. The total score ranges from 0 to 13, with higher scores reflecting higher caregiver burden. A score of 7 or higher indicates substantial caregiver burden.
Statistical analyses
Normality of distribution of the data was assessed by Shapiro-Wilk tests and visual plots. Descriptive analyses were applied to describe the study sample, using means and standard deviations for normally distributed data and medians and interquartile ranges for non-normally distributed data.
Independent samples t-tests, chi-square tests or Mann-Whitney U tests were conducted to test differences in demographic and psychosocial variables between effective and ineffective family functioning, in both patients and partners.
The Intraclass correlation coefficient (ICC) was used for measuring agreement within patient-partner dyads on their perception of family functioning. ICC estimates and their 95% confidence intervals (CIs) were calculated based on a single-rating, absolute agreement, two-way mixed-effects model. ICC values below 0.50 indicate poor agreement, values between 0.50 and 0.75 moderate agreement, values between 0.75 and 0.90 good agreement, and values greater than 0.90 excellent agreement (Citation36). A Bland-Altman plot was used to graphically display the level of agreement (Citation37).
Agreement on individual items was evaluated as the percentage absolute agreement (exact patient-partner score matches). Weighted kappa values with quadratic weights were also calculated to determine item-level agreement within dyads. Kappa values below 0.00 indicate poor agreement, values between 0.00 and 0.20 slight agreement, values between 0.21 and 0.40 fair agreement, values between 0.41 and 0.60 moderate agreement, values between 0.61 and 0.80 substantial agreement, and values over 0.81 almost perfect agreement (Citation38). Wilcoxon signed-rank tests were used to test differences in the perception of general family functioning and regarding individual items.
A two-tailed significance level alpha of 0.05 was used for all statistical tests. Data were analyzed using IBM SPSS Statistics version 25 for Windows.
Results
By the end of 2018, a total of 104 patients and their caregivers had been included in the ongoing CARE4Carer and CARE4Patient studies, 97 of whom provided complete data on family functioning for both members of the patient-caregiver dyad. CARE4Carer recruited 43 patients and their partners. CARE4Patient recruited 54 patients and their caregivers, of which 20 included other caregivers than partners. Those patient-caregiver dyads were excluded from the current study, resulting in a total of 77 patient-partner dyads. A description of their characteristics is presented in . Most patients had been diagnosed with stroke (87.0%), 8 of whom had had a recurrent stroke.
Table 1. Patients’ and partners’ characteristics (N = 77 dyads).
Family functioning as reported by ABI patients and their partners
The median FAD-GF score of the patients was 1.50 (IQR = 1.17–1.83) reflecting a positive perception of family functioning. Fourteen patients (18.2%) had a score of 2.0 or higher, indicating ineffective family functioning. No significant differences were found between patients reporting effective and those reporting ineffective functioning ().
Table 2. Characteristics of patients and partners reporting effective versus ineffective family functioning (N = 77).
The median FAD-GF score of the partners was 1.75 (IQR = 1.17–2.00) reflecting a positive perception of family functioning. Twenty-five partners (32.5%) reported ineffective family functioning. Partners reporting ineffective family functioning had significantly higher scores on caregiver burden (t(75) = −3.84; p < .001, d = 0.92), anxiety (U = 306.0; p < .001, r = −0.42) and depression (U = 297.0; p < .001, r = −0.44). In addition, partners reported ineffective family functioning when more time had passed since the brain injury (U = 377.0; p = .003, r = −0.34) and the patients were more often living at home (X2 = 15.5; p < .001, r = 0.45).
The perception of family functioning within dyads
Poor agreement within patient-partner dyads was observed for the FAD-GF scores (ICC = .45, 95% CI [.25, .61]). The Bland-Altman plot shows the difference between the FAD-GF scores of patients and partners (). The mean difference between the scores was 0.11 and the 95% limits of agreement ranged from −0.85 to 1.07. The agreement between patients’ and partners’ scores was independent of the value of the mean score. A significant difference was observed between the FAD-GF scores of the patients and those of their partners (Z = 2.274, p = .023), with partners reporting poorer family functioning.
Figure 1. Bland-Altman plot of FAD-GF scores from patients and partners.
Agreement and differences regarding individual items of the FAD-GF are presented in . Within-dyad agreement for the individual items ranged from slight agreement on three items, to fair agreement on eight items and moderate agreement on one item, viz. ‘4. Individuals are accepted for what they are’. The lowest percentage of absolute agreement (36.4%) was found for item 5 ‘We avoid discussing our fears and concerns’. The item ‘We don’t get along well together’ had the highest percentage of absolute agreement (71.4%) and a low weighted kappa (0.12). Further investigation revealed that the dyads showing less than perfect agreement on this item had a greater discrepancy: in 5.2% of the dyads one member reported ‘strongly agree’ while the other member reported ‘strongly disagree’. Significant differences were found for items 2, 3 and 8, with partners reporting poorer family functioning than patients.
Table 3. Agreement and differences on FAD-GF items within patient-partner dyads.
Discussion
This is the first study to investigate agreement and differences between patients and their partners regarding their perception of general family functioning following a brain injury. We found that agreement within patient-partner dyads was poor. The perception of patients, primarily post-stroke, and their partners differed, with partners reporting significantly poorer family functioning.
The objective of our study was to describe how patients with ABI and their partners perceive their family functioning. A previous study reported higher median scores on the FAD-GF in patients with stroke, indicating poorer family functioning, compared to our study (Citation14). King et al. (Citation14) reported a significant association between patients’ poorer family functioning and depressive symptoms, 2 years after discharge. We did not find this association, which may be attributable to the lower proportion of patients with ineffective family functioning in our sample (18.2% versus 33%). As regards the family functioning of partners, our findings are in accordance with previous research, which reported ineffective family functioning in about 30% of stroke caregivers (Citation13,Citation18). Partners reporting ineffective family functioning in our study perceived higher burden and had more symptoms of anxiety and depression. This is also in line with previous studies, which reported associations between family functioning and anxiety and depression in partners (Citation13,Citation17–Citation21).
Agreement on general family functioning between the patients and their partners was poor (ICC = .45), which is lower than the agreement found in healthy dyads (ICC = .65) (Citation39). A significant difference was observed between the FAD-GF scores of the patients and their partners, which is in accordance with a study which also reported poorer family functioning in partners compared to patients with stroke (Citation22). By contrast, our findings run counter to those from a previous study which reported significantly poorer family functioning in patients with stroke compared to their caregivers (Citation13). That study, however, also included caregivers other than partners. Partners may perceive poorer family functioning than other caregivers of patients with stroke (Citation40). Reports on the agreement and differences regarding individual items of the FAD-GF between patients with ABI and their partners have not been found in the current literature.
Our findings add to the scarce existing knowledge on the agreement and differences regarding family functioning. Low agreement between the perception of patients and their partners is also found in other concepts, such as physical functioning of the patient, cognitive, emotional and behavioral changes and activities in daily living, where the partners are again more pessimistic (Citation41,Citation42). The reason for this is unclear and requires further investigation.
The limitations of the current study should be mentioned. First, our study sample mainly consisted of patients with stroke (87.0%) and therefore these findings cannot be generalized to a broader population of patients with ABI and their partners. Second, this was a cross-sectional investigation and therefore the course of family functioning over time remains unclear. Third, patients and partners were excluded from the CARE4Patient trial if they reported significant symptoms of depression (HADS-D ≥ 11). Depressive symptoms may influence the agreement about and differences in perceived family functioning within dyads. Although few participants have been excluded due to symptoms of depression, our findings should be confirmed in a more heterogeneous sample with respect to depressive symptoms.
Patients with ABI (mostly stroke) and their partners differed in their perception of family functioning. Health care professionals should therefore assess family functioning in both patients with stroke and their partners. When family functioning can only be assessed in one member of a dyad, it is important to realize that perceptions within dyads may differ. We found that partners perceived poorer family functioning when more time had passed since the injury and when the patient had been discharged home. Family functioning is dynamic and likely to vary over time, as a result of changes in roles (e.g. from partner to caregiver) or depending on the post-injury phase (acute versus chronic) (Citation14,Citation19,Citation43,Citation44). Agreement about and differences in family functioning between patients and partners may also change over time. Family-centered interventions should be started early in the rehabilitation process, with repeated monitoring of the family functioning in both members of the dyad. Health care professionals should explore any discrepancies in the perception of family functioning and discuss these with both patient and partner.
Acknowledgments
The authors would like to thank all the patients and partners who participated in the CARE4Carer and CARE4Patient studies and the health care professionals who assisted with recruitment in the hospitals and rehabilitation centers.
Additional information
Funding
References
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