The Relationship Between Psychological and Physical Secondary Conditions and Family Caregiver Burden in Spinal Cord Injury: A Correlational Study

This study used a cross-sectional design. Data were collected between March and November 2018 from a consecutive sample of 56 dyads of family caregivers and people with SCI. Participants were enrolled at outpatient clinics in spinal units of the Città della Salute e della Scienza Hospital Turin, Italy, and the National Rehabilitation Hospital Dublin, Ireland. A family caregiver was defined as an individual, related by blood or partnership, who provides informal assistance to a relative with SCI. Family caregivers of people with traumatic or nontraumatic SCI discharged at least 6 months from rehabilitation and aged 18 years or older were included. Formal, paid caregivers, as well as individuals with cognitive impairments or mixed diagnoses (eg, brain injury), were excluded. Sociodemographic data of recruited dyads are presented in Table 1. Caregivers were mainly females (n = 47; 84%), married (n = 42; 75%), and almost all lived with their relatives with SCI (n = 47; 84%). Spouses represented more than half of the sample (n = 29; 52%). Care recipients had mostly paraplegia (n = 31; 55%) and SCI of traumatic etiology (n = 42; 75%). More than half of participants had an incomplete injury (n = 31; 55%).

Ethical approval was obtained from both centers before the commencement of the study (resolution no. CS2/596; March 13, 2018). Validation of a novel scale measuring self-care in people with SCI was the overall aim of the study protocol, and participation of family caregivers was an optional component. All applicable institutional and governmental regulations concerning the ethical use of human volunteers were followed. In particular, anonymity and confidential treatment of data were maintained during the research process. Participants were recruited during routine follow-up appointments at outpatient clinics in each spinal unit. As care recipients with SCI were also being recruited for this study, and to ensure privacy and avoid comparison of responses, two distinct sets of self-report assessment tools, taking approximately 15 minutes, were completed independently. A total of 35 Italian and 21 Irish dyads participated. The following data were collected.

Sociodemographic information was collected as follows: Participants provided information on age, gender, marital status, level of education, presence of an income, cohabitation, and number of children. Care recipients provided information on level of injury (paraplegia/tetraplegia), completeness (complete/incomplete), etiology (traumatic/nontraumatic), time since injury, and details about the presence of private assistants and health care utilization. Caregivers provided information on relationship with care recipient, years of caregiving, total hours spent providing care, and perceived economic impact.

Functional independence of care recipients was assessed with the modified Barthel Index (MBI).27 This 10-item questionnaire assesses functional ability in activities of daily living and shows excellent psychometric properties (Cronbach's α= .88) in an SCI population.28 Scores range from 0 (total dependence) to 100 (independence).

Physical secondary conditions were measured with the Spinal Cord Injury Secondary Conditions Scale (SCI-SCS).29 This 16-item, self-report questionnaire contains the most common physical complications related to SCI including skin, pain, cardiovascular, respiratory, musculoskeletal, metabolic, sexual, bladder, and bowel functions. A score of 0 (absence of significant issues in the last 3 months) to 3 (chronic condition) is provided for each item. The total attainable score is 48, with higher scores indicating more serious physical secondary conditions. The SCI-SCS has shown satisfactory psychometric properties, even when administered by telephone (Cronbach's α = .76).29,30 

Quality of life was evaluated using the eight-item Short-Form Health Survey (SF-8).31 This eight-item instrument provides physical component summary (PCS) and mental component summary (MCS) scores. The SF-8 uses norm-based scoring whereby values of more or less than 50 are respectively considered better or worse than expected for the general population.

Depression was assessed with the nine-item Patient Health Questionnaire (PHQ-9), a multipurpose questionnaire for screening severity of depression and manifestation of suicidal ideation.32 PHQ-9 scores range from 0 to 27 and are subdivided into four categories indicating mild, moderate, moderately severe, and severe depression. The PHQ-9 has been shown to have excellent internal consistency on the SCI population (Cronbach's α = .83).33 

Anxiety was measured with a General Anxiety Disorder (GAD-7) scale. This seven-item, self-administered tool provides scores varying from 0 to 21 and is divided into three categories indicating mild, moderate, and severe anxiety.34 It is considered reasonably good at screening panic, social anxiety, and posttraumatic stress disorders and has been applied to several populations affected by chronic diseases with excellent psychometric qualities (Cronbach's α = .92).35 

Caregiver burden was assessed using the Caregiver Burden Inventory in Spinal Cord Injury (CBI-SCI), a 24-item, self-report questionnaire composed of five subscales assessing the impact of burden on different domains36: time-dependent burden (T/dep-B), indicating stress resulting from reduced personal time; developmental burden (Dev-B), evaluating the sense of failing regarding one's life intentions; physical burden (Phys-B), measuring bodily strain; social burden (Soc-B), indicating the difficulties in fulfilling family or work roles; and emotional burden (Emot-B), referring to shaming caused by care recipients. The total CBI-SCI score ranges from a minimum of 0, indicating the absence of burden, to a maximum of 100, indicating the highest level of burden. This validated multidimensional tool capable of identifying characteristic elements of CB has excellent psychometric properties (Cronbach's α = .92).

Statistical analysis of data was carried out using the IBM SPSS program (Version 22) for Windows. Descriptive statistics were used to analyze the sociodemographic characteristics of the sample and the results obtained from administered questionnaires. Means and standard deviations were applied to define continuous variables, and frequency distributions were gathered from categorical data.

T-tests for independent groups were used to highlight differences between the obtained CBI-SCI means and some participants' sociodemographic variables, identified on the basis of literature and researchers' clinical experience. To allow data analysis, nondichotomized variables were converted as follows: time since injury (<3 years/>3 years), marital status (in a relationship/not in a relationship), relationship (partner/relative), level of education (low/high), last hospitalization (<1 year/>1 year), caregiving hours (<8 hours/>8 hours), and years of caregiving (<3 years/>3 years).

To assess the relationship between CB and the psychological and physical secondary conditions of care recipients, several bivariate analyses were performed between the results of the CBI-SCI and sociodemographic variables. Product moment correlations between caregiver burden and functional independence (MBI), quality of life (SF-8), and physical (SCI-SCS) and mental complications(PHQ-9,GAD-7) were calculated. To explore the influence of secondary complications on caregiver burden, the correlations between every item of the SCI-SCS and CBI-SCI and its dimensions were calculated. Pearson's coefficient (r) was determined as follows: a value of ± 0.30 was considered to be a weak correlation, a value of ± 0.50 was considered a moderate correlation, and a value of ± 0.70 was considered a strong correlation.37 If necessary, scores of continuous variables that were not normally distributed were log-transformed. All tests were two-tailed, and a p value < .05 was considered significant.

No significant differences were identified between Italians and Irish participants: They lived generally less than 10 kilometers from their health care provider (n = 36; 65%), who was most frequently identified as a general practitioner (n = 32; 58%), and whom they visited approximately every 6 months (n = 37; 66%). The majority of individuals with SCI had been rehospitalized during the previous year (n = 32; 57%). A small number lived alone (n = 7; 13%) or in an isolated area (n = 9; 16%), while almost a quarter of care recipients had a private assistant (n = 13; 23%).

Table 2 presents the questionnaire results. Higher scores were obtained on the Time-Dependent and Physical Burden dimensions of the CBI-SCI, while Emotional Burden was ranked lowest. The majority of care recipients reported moderate functional independence (n = 39; 69%). Spasticity was rated as the most frequent complication by two-thirds of the sample (n = 37; 66%), while UTIs (n = 32; 56%) and joint/articular pain (n = 30; 53%) were present in more than half. Less common physical secondary conditions were caused by loss of sensation (n = 6; 11%) and heterotopic bone ossification (n = 8; 14%). Mean scores for physical and mental components on the SF-8 were 41.8 (SD ± 9.5) and 50.8 (SD ± 11.2), while the majority of care recipients reported few symptoms of both depression (n = 48; 86%) and anxiety (n = 49; 87%).

Statistically significant differences (Table 3) were identified between the CBI-SCI for injury level (p < .05) and completeness of injury (p< .01). Caregivers with lower education showed statistically significant higher levels of burden (p= .05); this was also true for those providing care for more than 3 years (p < .01) and those providing more than 8 hours of caregiving daily (p < .01). No other statistically significant differences in sociodemographic variables were identified.

A summary of the bivariate analysis between dimensions of CBI-SCI and other variables are presented in Table 4. Physical complications were all correlated with at least one dimension of perceived burden. In contrast, no correlations were identified between the psychological status of care recipients and the level of burden among family caregivers. The Time-Dependent dimension of burden showed the highest number of correlations, most significantly with number of caregiving hours (r = 0.67; p < .01) and more moderately with functional level of care recipients (r = 0.47; p < .01). Emotional burden attained only a weak correlation with the SCI-SCS score (r = 0.27; p = .05).

Correlations between the dimensions of CBI-SCI and secondary conditions identified on the SCI-SCS were weak (Table 5). Pressure injuries were correlated with total CBI-SCI score (r = 0.30; p < .05) and time-dependent burden (r = 0.38; p < .01), highlighting the time-consuming nature of caregiving for SCI individuals affected by skin complications. Bladder dysfunction and UTIs showed correlations with all CBI-SCI dimensions, even including the developmental and physical aspects of burden. Similarly, chronic pain experienced by care recipients was weakly related to the developmental (r = 0.31; p = .02) and the emotional (r = 0.31; p = .02) burdens perceived by caregivers.

This study indicates that the burden experienced by family caregivers of people with SCI is directly related to the extent of physical secondary complications of care recipients. Significantly higher levels of perceived burden were identified in caregivers with lower education, those whose care recipients were affected by tetraplegia and incomplete injuries, and caregivers providing support for a prolonged period. The psychological status of care recipients was not found to contribute to caregiver burden in this study.

The overall level of CB identified in this study is lower than that obtained by Maitan et al5 on a sample consisting principally of caregivers of people with tetraplegia and either total or severe functional dependence. However, the pattern of CBI-SCI scores is comparable, with higher scores attained in the Time-Dependent and Physical dimensions. The inverse correlation between CBI-SCI and MBI in this study is consistent with the findings of Post et al24 identifying functional level as a predictor of CB in a population of people with moderate or minor disabilities.

Demographic and SCI characteristics in this study are comparable to the general SCI population, and the pattern of physical secondary conditions is consistent with those obtained in previous studies,29,38 with chronic pain being more common than UTIs and PrIs. Caregivers reporting the absence of any income22,39 and rehospitalization rates,16,40 although not related to increased CB, were comparable to other studies. Results confirm that the simultaneous occurrence of more than one complication is common in people with SCI,41 with potential risks associated with reduced functionality, QoL, and social participation.10,42,43 

Although the impact of complications on caregivers' well-being has been previously identified,24,25 this study provides more detailed information on the association between specific secondary conditions and separate components of CB. For example, the time-consuming and burdensome vigilance required to prevent and manage PrIs is reflected in the significant time-dependent score.44,45 In the same way, the correlations obtained between UTIs and developmental and emotional burdens confirm that the strict routines involved in appropriate bladder management can result in profound changes in familiar patterns.19 The influence of chronic pain on emotions and sleep disturbances previously identified46 is consistent with increased developmental and emotional burdens in the current sample.

Even though depression and anxiety rates in the sample are consistent with existing literature,47,48 the small sample size may explain the absence of correlation between care recipients' psychological status and perceived burden. Although the influence of SCI care recipients' QoL on caregivers' mental health has been identified,26 findings of this study showed only a weak correlation between CB and PCS. Results confirm that, despite lower than expected QoL scores compared to the general population, people with SCI tend to report good mental QoL.49 

The evaluation and reduction of subjective burden in family caregivers is fundamental to the preservation of health and social functioning of families following life-altering SCIs. The correlation identified between secondary physical conditions and caregiver burden emphasizes the importance of reducing secondary conditions, not just for the benefit of individuals with SCI but also to protect the well-being of family caregivers. However, given the indefinite direction of causality, the possibility that overwhelmed caregivers are less inclined to engage in preventative behaviors must be taken into account and further explored. Empowerment of caregivers may reduce secondary conditions, and health care policies and rehabilitation programs must consider the need for a two-pronged approach addressing both complications and CB. The potential use of online programs for caregivers, similar to those used to improve self-management of UTIs50 and chronic pain51,52 in people with SCI, warrants exploration. The use of technology as applied in the prevention of PrIs53 may be a resource to support families and to enhance communication with health care professionals. Caregivers require education and support, and a combined approach using psycho-education sessions during rehabilitation and peer support groups after discharge is recommended.

Despite its strengths, such as the multicenter design, this study has several limitations. The small number of participants, combined with the use of a cross-sectional design and the means of recruitment, reduces the generalizability of results. A comparative study of CB, including a control group of SCI individuals without secondary complications, is recommended. A longitudinal approach would assist in identifying the variation in CB across the lifespan in response to care recipients' physical and psychological health. Although the Spinal Cord Independence Measure (SCIM) might be a more sensitive measure of independence,54 the MBI was selected as a short, reliable instrument that participants could complete more easily. This study included a high proportion of people with incomplete injuries, and future studies could benefit from an exclusive focus on specific cohorts of individuals with SCI. A larger sample size would have allowed for a more detailed exploration of additional factors like age, gender, and variability in the relationships of caregivers and recipients.

Caregiver burden in this study was related to the presence of physical secondary conditions in care recipients with SCI. The provision of care over prolonged time periods, injury level, and completeness of injury were associated with a decline in caregiver well-being. The presence of physical secondary conditions is associated with both increased time and emotional demands on caregivers. Innovative, targeted, preventative health interventions that include caregivers and care recipients are recommended to reduce caregiver burden and enhance individual and family well-being following SCI.

The authors have no conflicts of interest to disclose.