Introduction and Background
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- Introduction and Background
Spinal cord injury (SCI) is one of the most devastating injuries and affects the physical, psychological, social, and spiritual well-being dimensions of the person, as well as their subjective quality of life (QOL) (Post & van Leuven, 2012; Song & Nam, 2010). There are approximately 273,000 people in the United States living with a SCI, with the estimation of 12,000 occurring annually (National Spinal Cord Injury Statistical Center, 2013). Due to rapid medical emergency services and medical technologies available and despite the risk of fatal medical complications, such as pulmonary emboli, pneumonia, and septicemia as well as the incidence of depressive symptoms (Krause, Kemp & Coker, 2000), people with SCI are living well into their 70s, with the average life span of adults with paraplegia at 65–73 years (National Spinal Cord Injury Statistical Center, 2013). The person with paraplegia is aging with physiological and psychological complications, posing the concern of their QOL (Kemp & Ettelson, 2001; Krause, 2010). Depressive symptomatology is the most common psychological complication experienced by people with SCI (Fuhrer, Rintala, Hart, Clearman & Young, 1993), with a higher incidence identified in those of increasing age and longer length of injury (Krause et al., 2000). Although some studies indicate people aging with SCI have improved QOL over time (Charlifue & Gerhart, 2004; Hu, Mak, Wong, Leong & Luk, 2008), it is well documented that QOL is a main concern for most individuals living with SCI.
Barker et al. (2009) illustrated a significant lower QOL between people with SCI than those nondisabled based on the Australian norm (p < .001). In a study of 270 people, decreased function, secondary impairments, activity limitations, and the inability to participate in community or social events were the causes explained for a poorer QOL (Barker et al., 2009). Their findings were similar to those of Blanes, Carmagnani and Ferreira (2008) who studied 60 individuals with paraplegia living in Brazil; low subjective QOL due to the incidences of pain, pressure ulcers, demeaning or lack of employment, poor vitality, or significant impaired physical function was found (Blanes et al., 2008).
Although many studies addressing the QOL of people with SCI have shown predictors such as functional independence, employment, and social or family support lead to a higher QOL (Barker et al., 2009; Blanes et al., 2008; van Leuven et al., 2012), little research has been conducted to consider whether or not a person's spiritual well-being (SWB) may improve QOL while living with SCI.
SCI has a major impact on the person's SWB including positive feelings, such as greater awareness of self (McColl et al., 2000) and the belief the SCI survivor serves a higher purpose for God or Supreme Being (Graf, Marini, Baker & Buek, 2007). In contrast, a minority of those studied believed the injury served as a punishment from God or Supreme Being; others bargained with God and felt abandoned when their prayers were not answered (Graf et al., 2007). Marini and Glover-Graf (2011) found the interest in religious or spiritual practices was high initially, but over time decreased as living with SCI was slowly adapted to and life adjustments were made. Most participants in the study felt “satisfaction with God… that God was a source of coping and gave meaning to their life” (p. 82).
Brillhart (2005) studied the relationship between a person's SWB and satisfaction with life of 230 long-term SCI individuals. The Satisfaction with Life Scale (SWLS; Pavot & Diener, 1993) and the Factor III of psychological/spiritual of the Quality of Life Index (QLI, Ferrans & Powers, 1985) were used as measurements. Study results indicated a significant positive correlation (r = .621, p = .001), including both domains with life satisfaction: peace of mind (r = .65) and faith in God (r = .47), (Brillhart, 2005). Although Brillhart analyzes faith in God and peace of mind using the QLI instrument, the study does not address the participant's religious affiliation, whether or not he/she is practicing his/her faith, assess SWB from an existential approach, or the incidence of depression. These factors separately or in combination may affect the person's SWB and subjective QOL.
Notably, extant research indicates improved health outcomes and QOL following illness or disability result if SWB is assessed and spiritual needs are addressed (Brillhart, 2005; Chlan, Zebracki & Vogel, 2011; Marini & Glover-Graf, 2011; Rippentrop, Altmaier & Burns, 2006; Tan, Wutthilert & O'Connor, 2011). Nonetheless, with the recognition that spirituality is a complex, multilayered dynamic, which is different for each person, the literature lacks clarity in whether the association between SWB and QOL is due to faith in God solely (religiosity) or from a sense of purpose in life (existential).
Purpose of the study
The purpose of this study was to examine the relationship between SWB, depression, and QOL for people living with paraplegia 1 year and longer. Specific research questions included: (1) What is the level of SWB (existential and religious), depression, and QOL among people with paraplegia? and (2) What is the relationship of SWB (existential and religious), depression, length of time injured, age, gender, and QOL for people with paraplegia?
This study was informed by Ferrell and Grant's “Quality of Life Model.” QOL encompasses the physical, psychological, social, and spiritual dimensions of the person (Ferrell & Grant, 2000). The dimensions are interrelated and the relevance of one or several of the aspects within the dimensions may be affected by change in individual circumstances, such as life changes from a SCI. The physical well-being dimension includes functional ability. As the person experiences multiple symptoms related to the disease or its progression, functional ability is affected. The psychological well-being is affected as emotional responses to illness can occur, such as anxiety, sadness, fear, depression, denial/acceptance, and hope/hopelessness (Ferrell, 2005). A person's sense of spirituality or SWB is often what helps the person cope with losses and find meaning in life (Ferrell, 2005). This is necessary for the person while dealing with the losses associated with a SCI. All dimensions of the “Quality of Life Model” affect the person living with paraplegia. This study focused on the interrelatedness of QOL to the dimensions of psychological well-being (depression) and SWB (religiosity and meaning).
- Top of page
- Introduction and Background
Participants range from 18–78 years of age, with the majority (96%) between 18–57 years, and included 82.7% males. The sample is diverse Hispanic (56%) and black (29.3%) with the length of injury ranging between 1–39 years. The etiology of injury for over two-thirds (69.3%) was a gunshot wound. Analyses indicated no significant differences in person's SWB based upon source of injury (gunshot, MVA, and all other) F = .89 (2, 72), p = .42. Slightly less than half (45.3%) had some degree of college education with 13.3% receiving a bachelors' or masters' degree. Eighty-five percent lacked current employment, and 57.3% were not actively involved in support, sports, or church groups. Religious affiliation was primarily Christian (82.7%), with the majority (60.6%) practicing their faith; nine (12%) did not communicate a religious preference, however did state belief in a God or Supreme Being. Forty percent of participants were either married (21.3%) or had a significant partner in his/her life (18.7%); 40% stated they were single. Over half had children (56%), of those, only 18 (42.9%) were living in the same household. Approximately two-thirds (64%) scored below the cut-point of 16 on the CES-D scale, illustrating an absence of depression (Radloff, 1977); eight (10.7%) were currently prescribed antidepressant medication.
Mean scores of SWB Total (100.87), RWB (51.97), and EWB (48.89) were relatively high, indicating strong SWB. The CES-D mean (13.27) was 2.73 points below the cutoff score of 16 (depressive symptomatology). Participants viewed their QOL better than, “it's neither good nor bad,” with the mean 5.24. The average number of years living with paraplegia was 16.65 years (Table 1).
Table 1. Participant Characteristics (n = 75)
|Variable|| n ||Range|| M || SD |
|Years/months post injury||75||1–38 years/4 months||16.66||9.56|
|Length of time taking antidepressant medication||8||1–15 years||5.88 years||5.82|
|Gender (n, %)|
|Male||62 (82.7%)|| || || |
|Cause of Injury (n, %)|
|Gunshot wound||52 (69.3%)|| || || |
|Motor vehicle accident||12 (16.0%)|| || || |
|Other||11 (14.6%)|| || || |
Table 2 shows the correlations between the independent variables and QOL. In this sample, EWB had a strong positive correlation (r = .628, p = .01) and SWB Total had a moderate positive correlation (r = .47, p = .01) with QOL. A statistically significant inverse correlation was found between depression and QOL (r = −.59, p = .01). RWB trended toward a small positive correlation with QOL (r = .216, p = .06).
Table 2. Pearson Product-moment (r) Correlations Between Spiritual Well-being (Existential and Religious), Depression, Length of Injury, Gender, Age, and Quality of Life
|Independent Variables||Quality of Life (r)|
|Spiritual well-being||(SWBS total) .47a|
|Length of Injury||.10|
Simultaneous multiple regression was conducted to determine the accuracy of the independent variables: RWB, EWB, depression, gender, age, and length of injury, which were entered into the analyses as continuous variables. The overall model significantly predicted QOL, R2 = .49, R2adj = .45, F(6, 69) = 10.92, p < .001. Gender, EWB, and depression significantly contributed to the model, with the model accounting for 49% of the variance in the person's QOL (Table 3).
Table 3. Regression Analysis of Paraplegic Patient's QOL on Six Predictor Variables
|Predictor Variable (Independent Variable)|| B ||β|| SE || t ||p-value|
|Length of Injury||.002||.02||.02||.15||.88|
|Multiple R = .70||R squared adjusted = .45|
|R squared = .49||F(6, 69) = 10.92, p = .000|
- Top of page
- Introduction and Background
Our study findings indicate the levels of SWB Total, as well as the subscales of EWB and RWB were relatively high. Notably, findings indicate despite living with paraplegia, the majority of patients found a sense of purpose and meaning in their lives. Although 39.4% of patients reported a lack of religious involvement or practice, most patients indicated a strong faith in God or Higher Power. In conversation, several patients explained that this catastrophic event resulted in a stronger faith and that “God was giving me a second chance.” This study suggests that despite living with a major disability, such as paraplegia, a person's SWB may be strong existentially in most cases, but even stronger religiously. Using the SWBS, Mathesis, Tulsky and Mathesis (2006) found people with SCI (57% tetraplegia) experienced average EWB (41.1, SD = 7.93) and average RWB (41.0, SD = 11.04). This is in comparison to this study which found higher levels of SWB (100.87, SD = 16.03), EWB (48.89, SD = 8.80), and RWB (51.97, SD = 9.57). The exclusion of tetraplegics may be the reason for higher SWB, EWB, and RWB scores in this study, with individuals having greater functioning ability.
The level of depression was lower in this study than the CES-D cutoff score of 16. The mean score of this study (13.27) was lower than the mean of 14.3 reported by Miller et al. (2008), but higher than previously reported by Fuhrer et al. (1993) of 12.1. Thirty-six percent of the current participants exhibited depressive symptoms, which is similar to the Miller et al. study that showed 39%. Decreased mobility has been associated with higher incidence of depressive symptoms (Fuhrer et al., 1993; Miller et al., 2008), as well as Latinos reporting a greater incidence of symptoms compared to other ethnic groups (Kemp, Krause & Adkins, 1999). Participants in this study scored higher on CES-D items which can be the result of limited mobility: “I feel everything I did was a real effort” and “my sleep was restless” due to the “inability to move freely.” Although 56% of participants in this study were Hispanic, an ANOVA showed no significant difference on depression mean scores by race/ethnicity, F(5, 69) = .696, p = 0.63.
The level of QOL for people with paraplegia is moderate, it is better than “It's neither good nor bad,” with a mean of 5.24; however, it is not “high” (6–7). This result is similar to the findings of Kemp and Ettelson (2001) who found the disabled with SCI scored a 5.1 on the QOL Scale in contrast to the nondisabled who scored a 6.0. Charlifue and Gerhart (2004) reported a high perceived QOL by people with SCI that stabilizes over time. Over 9 years, 189 participants rated their QOL as either excellent/good, fair, or poor, at three different intervals. Excellent/good ratings for QOL resulted: 78.1% (initial interview), 82.8% (3 years later), 75.3% (6 years later), and 75.2% (9 years later).
EWB had a strong positive correlation (r = .628, p = .01) and SWB Total had a moderate positive correlation (r = .47, p = .01) with QOL. This suggests people with paraplegia who had purpose, peace, and meaning in life are more likely to indicate a higher subjective QOL. This is in contrast to RWB, which trended toward a small positive correlation (r = .216, p = .06) to QOL, illustrating although the participants on an average scored high on RWB, a significant association with QOL did not exist. This implies having a strong faith in God or Supreme Being does not necessarily result in a better perceived QOL. These results are consistent with previous studies conducted (Mathesis et al., 2006) with SCI patients; as well as with patients diagnosed with chronic illnesses (Delgado, 2007; Rippentrop et al., 2006).
The use of spiritual interventions may be an effective coping strategy in decreasing depression and enhancing one's QOL, as Coleman's (2004) study showed a higher sense of being and purpose (EWB) inversely correlated with the depression score and the predictors of EWB and RWB explained 32% variance in depression for people living with HIV/AIDS. Similar results were indicated in this study as EWB and SWB Total showed a significantly inverse relationship with depression scores (CES-D), emphasizing having a strong SWB can result in lower depressive symptomatology.
Gender, age, and length of injury were not significantly correlated with a person's QOL, although gender did show a trend and significantly contributed to the regression model. The lack of gender difference is identified in previous findings within the SCI population (Hampton, 2004; Hu et al., 2008; Krause, Saladin & Adkins, 2009; Lidal, Veenstra, Hjeltnes & Biering-Sorensen, 2008). Many studies indicate the person's subjective QOL or satisfaction in life improves as length of time post injury increases, as one adjusts to life and bodily changes (Krause, 2010). However, several studies show as age increases, QOL decreases, as well as an increase in depressive symptoms (Post & van Leuven, 2012; Saunders, Krause & Focht, 2012).
Strengths and limitations
The findings of this study are important because this is one of the few studies to examine the relationships between SWB, depression, patient characteristics, and QOL among an ethnically diverse group of paraplegics. Performing one-to-one direct personal interviews with participants and reading each item from the instruments reduced confusion of meaning. Although there is the potential for bias reading items verbatim, it allows for the inclusion of participants of all levels of literacy. The three standardized tools instruments used had sound psychometric properties, enhancing study results credibility. Although the SWBS has sound psychometric properties, it is not appropriate for people who do not believe in God or a Supreme Being, decreasing its generalization to all faith traditions. The sample size is adequate; however, the small representation of 13 women (17.3%), which is expected with the SCI population, limits information on their possible unique perceptions of spirituality and of QOL. The cause of injury was comprised of a large number of gunshot victims (69.3%) which is similar to etiology of SCI reported by Blanes, Carmagnani, and Ferreira (2008) of 63.3%, but much higher than the 14.3% reported by the National Spinal Cord Injury Statistical Center (2013). This may be due to the location of the study where a high prevalence of gang-affiliated injuries is present. The sample was a purposive convenience sample that is relatively homogenous with respect to gender, geographic location, faith, and not randomly selected or matched. This nonrandom procedure may influence the findings through self-selection bias. The correlational, cross-sectional design allows for analysis at one point in time and disallows for changes over time.
- Top of page
- Introduction and Background
A person's SWB contributes to the QOL of a person living with paraplegia and possibly lowers the incidence of depression. As expected, depression had a moderate inverse relation to QOL, whereas relationships between age, gender, length of injury, and QOL were nonsignificant. Despite having high SWB and RWB mean scores, the relationship between RWB and QOL was weak and nonsignificant; having faith in God and/or a Supreme Being played only a minor role in the person's perceived QOL. Having purpose and meaning in life, whatever the cause or causes, had a strong association with the person's perceived QOL. For some individuals, a strong faith in God may result in having purpose and meaning in life; for others, it may be having a strong support system, such as family, or having a productive meaningful job to go to each day. Further studies, including qualitative, to explore what constitutes a high QOL and what factors contribute to a sense of purpose and meaning for people living with paraplegia are needed. Rehabilitation nurses can help guide patients to the discovery of what brings purpose and meaning to their lives.
Significance to nursing
This study provides valuable information for nursing professionals caring for patients with SCI. A positive relationship between SWB and QOL has implications for spiritual care by clergy, nursing, and other healthcare team members during the rehabilitation phase and beyond. Whether a person is dealing with chronic illness, terminal illness, or a permanent disability, one's faith or spirituality may be questioned. Spiritual care is within a cultural context, has many dimensions, and rehabilitation nurses could provide interventions, such as recommending a spiritual advisor or chaplain or providing sources of meditation or inspiration. Music therapy, imagery, mindfulness, therapeutic touch, and active listening are other means of assisting patients to achieve a sense of spiritual well-being (Finocchiaro, 2008; O'Brien, 2007). Spiritual care can simply be helping the patient understand what provides him/her QOL; notably QOL is whatever the patient wants it to be (O'Brien, 2007). The rehabilitation nurse has the opportunity to help the patient understand this and to clarify what gives him or her wholeness and purpose in life. Further research exploring the effectiveness of other modalities or spiritual interventions to enhance a person's subjective QOL following a SCI is indicated.