Spirituality and Outcomes in Caregivers of Persons With Traumatic Brain Injury (TBI)

Abstract

Purpose/Objective:

Spiritual well-being has been associated with better quality of life outcomes in caregivers, but the associations among the care recipient’s functional status, the caregiver’s spiritual well-being, and the caregiver’s health-related quality of life (HRQOL) is unknown.

Research Method/Design:

The study examined the Spiritual Well-Being Scale in caregivers of persons with traumatic brain injury (TBI; n = 335). Participants completed measures from the Patient-Reported Outcomes Measurement Information System, the Quality of Life in Caregivers of TBI, and the Caregiver Appraisal Scale. The Mayo-Portland Adaptability Inventory–4 (MPAI-4) measured care recipient’s functional status. The association between religious well-being and existential well-being and HRQOL were examined with Pearson correlation coefficients. Multiple linear regressions examined the interaction between caregiver well-being and care recipient functional status on HRQOL outcomes accounting for demographic variables.

Results:

Less favorable caregiver HRQOL was associated with military affiliation, male status, spousal caregiver relationship, and White race. MPAI-4 was moderately associated with all HRQOL subdomains. For spiritual well-being, existential well-being was moderately correlated with 9 of 16 HRQOL subdomains in comparison to religious well-being that demonstrated small correlations with 3 of 16 subdomains. MPAI-4 had negative effects on HRQOL regardless of spiritual well-being with higher existential well-being reducing the negative impact of the care recipient’s functional impairment on HRQOL for significant HRQOL interactions.

Conclusions/Implications:

Interventions that encourage development and maintenance of life purpose and meaning in caregivers of persons with TBI, and less so, spirituality, might have beneficial effects on HRQOL when the person with injury has more functional limitations.

Introduction

Traumatic brain injury (TBI) affects more than 1.7 million Americans per year, and though many individuals have a good recovery, those with severe injuries experience significant functional and psychosocial changes (Faul, Xu, Wald, & Coronado, 2010). Associated chronic sequelae can impact an individual’s ability to independently care for themselves, maintain gainful employment, and successfully navigate interpersonal relationships with significant others (Jorge et al., 2004; Silva, Ownsworth, Shields, & Fleming, 2011; Soo & Tate, 2007; Tate & Broe, 1999). Given the complexity of recovery for individuals following TBI, such individuals might rely on care partners, such as friends or family, to compensate for their loss in independent functioning and productivity (Knight, Devereux, & Godfrey, 1998). Caring for individuals with TBI can be a long-term undertaking that exposes caregivers to a number of psychosocial stressors resulting in a high rate of emotional distress and burden, both at the early stages of TBI rehabilitation and chronically thereafter (Bayen et al., 2013; Brooks, Campsie, Symington, Beattie, & McKinlay, 1986; Ennis, Rosenbloom, Canzian, & Topolovec-Vranic, 2013; Kreutzer et al., 2009; Marsh, Kersel, Havill, & Sleigh, 1998b; Norup, Kristensen, Siert, Poulsen, & Mortensen, 2011; Norup, Siert, & Lykke Mortensen, 2010; Norup, Welling, Qvist, Siert, & Mortensen, 2012; Turner et al., 2010).

One psychosocial outcome frequently discussed within the caregiver literature is diminished health-related quality of life (HRQOL; Arango-Lasprilla et al., 2011; Gulin et al., 2014; Knight et al., 1998; Kratz, Sander, Brickell, Lange, & Carlozzi, 2017; Marsh, Kersel, Havill, & Sleigh, 1998a; Rotondi, Sinkule, Balzer, Harris, & Moldovan, 2007). HRQOL refers to one’s perception of his or her physical, social, and psychological health in the context and interplay between individual experiences, expectations, values, and attitudes (Arango-Lasprilla et al., 2011; Chronister, Chan, Sasson-Gelman, & Chiu, 2010). Care partners of persons with TBI report poorer HRQOL than the general population; caregiver HRQOL is incrementally influenced by the injured individual’s level of disability, as well as the nature of the caregiver and recipient of care, such as kinship (e.g., spouse vs. parent caregiver; A. Norup et al., 2012; Arango-Lasprilla et al., 2011; Knight et al., 1998; Koskinen, 1998; McPherson, Pentland, & McNaughton, 2000; Nanda & Andresen, 1998; Norup et al., 2011; Norup et al., 2010). Reductions in HRQOL include caregiver psychological burden, depression, anxiety, and social isolation (Corrigan, Bogner, Mysiw, Clinchot, & Fugate, 2001; Gulin et al., 2014; Knight et al., 1998; Marsh et al., 1998a; Norup et al., 2013; Rotondi et al., 2007). Research demonstrates that both caregivers’ pre- and postinjury HRQOL is related to caregiver stress. Noted preinjury HRQOL factors include medical illness, psychological difficulties, and escape-avoidance coping style (Davis et al., 2009).

Understanding the multitude and synergistic effects of adjustment and coping factors related to HRQOL is imperative for the development of interventions aimed at improving caregiver’s HRQOL. Existing literature indicates that some of the strongest postinjury predictors of caregiver HRQOL involve coping resources, including both perceived social support and a caregivers’ coping style (Hanks, Rapport, & Vangel, 2007). Ergh and colleagues (Ergh, Hanks, Rapport, & Coleman, 2003; Ergh, Rapport, Coleman, & Hanks, 2002) have shown that perceived social support moderates both caregiver psychological distress and life satisfaction. In their research, caregivers without adequate social support, relative to those with adequate support, reported higher levels of distress with increasing time postinjury, as well as greater distress and lower satisfaction with greater care recipient cognitive dysfunction and unawareness of deficits (Ergh et al., 2003; Ergh et al., 2002). Notably, psychological adjustment and coping resources appear to affect not only the caregiver, but also the care recipient. Poor caregiver social support is associated with poor psychological well-being in the person with the TBI. Similarly, poor caregiver psychological well-being is associated with higher care recipient (person with TBI) disability on follow-up (Vangel, Rapport, & Hanks, 2011). In addition, internal coping factors, such as the effectiveness of caregiver’s coping are related to HRQOL and overall well-being in both the caregiver and the individual with TBI (Chronister & Chan, 2006). Chronister and Chan (2006) described commonly utilized coping strategies in caregivers of individuals with TBI, finding that strategies tend to be problem-focused (e.g., finding solutions to specific problems), emotion-focused (e.g., accepting the current situation and taking an approach of positive reappraisal), or avoidant (e.g., emotional distancing or denial; Chronister & Chan, 2006).

Interventions focused on coping resources, such as caregiver social support, have demonstrated positive effects on caregiver HRQOL. Hanks, Rapport, Wertheimer, and Koviak (2012) demonstrated that increased caregiver social support, through involvement in a peer mentoring program, was associated with better community integration for the caregiver. Cumulatively, research findings stress the importance of caregiver access to avenues of social support, including but not limited to, respite care and peer mentoring. Furthermore, research highlights the continued benefit of identifying HRQOL-related adjustment and coping factors around which caregiver intervention can be designed. Spiritual well-being is one such factor, which has been thoroughly explored within persons with TBI and caregivers of those with other chronic medical conditions (e.g., cancer, Alzheimer’s disease), but has been examined far less frequently in caregivers of person’s with TBI.

Spiritual well-being has been associated with better mental health and quality of life outcomes. Persons with TBI, similar to individuals with chronic medical conditions and their caregivers, use religion and spirituality as a mechanism to effectively cope with rehabilitation, community reintegration, and the long-term effects of brain injury (Campbell, Yoon, & Johnstone, 2010; Kilpatrick & McCullough, 1999; Nightingale, 2003; Shah, Snow, & Kunik, 2002). C. G. Ellison and George (1994) made a distinction between two facets of spiritual well-being, asserting that religious well-being denoted a specific relationship with God, while existential well-being denoted the conviction that there are purpose and meaning in one’s life. In addition to the benefits of emotional support, either from a religious community or from a sense of connection to a higher power, spiritual beliefs attribute meaning and purpose to human suffering. The divine is often experienced as a comforting presence of unconditional love, which might assist in the acceptance of immediate circumstances and result in better outcomes (Koenig, 2013).

The spiritual/religious versus existential well-being distinction is important, as research is mixed on how types of spiritual well-being are related to HRQOL. Research with cancer survivors, specifically examining the subconstructs of spiritual well-being (religious vs. existential), reported that existential well-being fully mediated religious well-being’s effect on cancer survivor’s HRQOL (Edmondson, Park, Blank, Fenster, & Mills, 2008). In contrast, the perception of connectedness to a higher power was more predictive of well-being and improved functional outcomes than engagement in specific religious practices or a nonreligious sense of purpose in one study of persons with TBI (Waldron-Perrine et al., 2011). Riley and colleagues (Riley et al., 1998) identified a third type of spiritual well-being, nonspiritual. They found that, in comparison to a nonspiritual group of individuals with chronic illness, those with higher religious or existential well-being demonstrated better HRQOL. Noteworthy, the existential well-being group demonstrated the highest HRQOL. The authors posited that religiosity and faith might contribute to overall spiritual well-being but might not be necessary (Riley et al., 1998).

Beyond spiritual and religious coping in non-TBI persons and caregivers, less is known about the spiritual well-being construct in caregivers of persons with TBI. With the intent to identify HRQOL-related adjustment and coping factors for future caregiver intervention development, the current study examined caregiver spiritual well-being in relation to caregiver HRQOL at different levels of functional impairment in the individual with TBI. Injury severity is consistently shown to impact HRQOL outcomes for both the person with TBI and their care-partner. Specifically, in the context of varying levels of functional status in the person with injury, spiritual well-being in the caregiver was examined in relation to caregiver’s general psychological functioning (e.g., emotional support, social isolation), their perception of the caregiving role, and their experiences of caregiver-specific psychological stress (e.g., caregiver-specific anxiety). It has been hypothesized that greater spiritual well-being is associated with better caregiver HRQOL.

Method

Participants

Data for the current study was analyzed retrospectively. The initial sample consisted of 534 participants enrolled in the Quality of Life in Caregivers of TBI (TBI-CareQOL) study which aimed to develop and validate measures of HRQOL specific to caregivers of persons with TBI (Carlozzi, Kallen, Hanks, Hahn, et al., 2019). Only 335 participants of the original 534 were available for the current analysis secondary to limitations in data use and dissemination. One study site only granted permission to disseminate findings listed in the primary study aims and thus their participants (n = 199) were unavailable for the current project. Data collection for the current analysis occurred at the University of Michigan (Ann Arbor, MI), TIRR Memorial Hermann (Houston, TX), Rehabilitation Institute of Michigan (RIM; Detroit, MI), and James A. Haley Veterans’ Hospital (Tampa, FL). All data collection sites gained approval for this study through their respective Internal Review Boards and Human Investigation Committees. Caregivers of civilians with TBI were recruited at University of Michigan, TIRR Memorial Hermann, and RIM through existing TBI caregiver databases and medical record data capture systems (Hanauer, Mei, Law, Khanna, & Zheng, 2015); caregivers of service members/veterans TBI were recruited through community-based outreach at the University of Michigan and through medical record systems and both hospital-based and community outreach at the James A. Haley Veterans’ Hospital. All data collection sites gained approval for this study through their respective Internal Review Boards and Human Investigation Committees and caregivers provided informed consent prior to their participation in this study.

For eligibility, the caregiver must have been caring for at least one year post injury an individual, 18 years or older, who met the following criteria: a medically documented complicated mild, moderate, or severe TBI based on TBI Model Systems criteria for civilians with TBI (Corrigan et al., 2012), or a medically documented diagnosis of a mild, moderate, or severe TBI by a military or Veteran Affairs treatment facility for service members/veterans.

Caregivers were asked the following question, “On a scale of 0 to 10, where 0 is no assistance and 10 is assistance with all activities, how much assistance does the person you care for require from you to complete activities of daily living due to problems resulting from his or her TBI? Only caregivers who indicated a response of ≥1 were included in the study. Activities could consist of personal hygiene, dressing and undressing, housework, taking medications, managing money, running errands, shopping for groceries or clothing, transportation, meal preparation and cleanup, remembering things, and so forth?”

Measures

Demographics.

Caregiver demographic information including age, gender, race/ethnicity, education, and years in the caregiver role were collected using Assessment Center, a secure online data collection platform. Demographics of the person with injury, including age, gender, time since injury, cause of injury, and method of injury were collected from medical records when available.

Spiritual Well-Being Scale (SWBS; C. W. Ellison, 1983; Paloutzian & Ellison, 1982).

The SWBS is a 20-item measure that assesses spirituality and meaning. Items cover two subscales including religious well-being (RWBS; e.g., “My relation with God contributes to my sense of well-being”) and existential well-being (EWBS; e.g., “I feel very fulfilled and satisfied with life”). Notably, the SWBS instructions highlight that some statement items refer to God and allow the respondee to “substitute another idea that calls to mind the divine or holy” if the respondee is not comfortable with the word as stated. Each item is rated on a six-point Likert-type scale ranging from 1 (strongly disagree) to 6 (strongly agree), with negatively worded items being reverse scored. Scores for the total SWBS range from 20 to 120 with higher scores indicating greater spiritual well-being. Scores on the EWBS and RWBS range from 10 to 60, where higher scores indicate greater well-being.

Mayo-Portland Adaptability Inventory Version 4 (MPAI-4; Malec, 2005).

The MPAI-4 is a measure of caregivers’ perceptions of the ability, adjustment, and participation of the person with injury. The measure consists of 35 items rated from 0 (none) to 4 (severe problem). The MPAI-4 is scored on a T metric with a mean of 50 (SD = 10); higher scores indicate more severe impairment. Relative to individuals with acquired brain injury (ABI), a T score between 40 and 60 would be considered average for individuals seen in outpatient, community-based, or residential rehabilitation following brain injury. Specifically, a T score above 60 would be suggestive of severe limitations in persons with TBI in comparison to the suggestion of relatively good outcomes in those with a T score below 30. T scores between 40 and 50 are associated with mild to moderate perceived limitations in the person with TBI and T scores between 30 and 40 would suggest mild limitations in the person with TBI.

Quality of Life in Caregivers of Persons with TBI (TBI-CareQOL; Carlozzi, Kallen, Hanks, Hahn, et al., 2019).

The TBI-CareQOL measurement system was developed to assess HRQOL concerns specific to caregivers of persons with TBI. The reliability and validity of these measures has been demonstrated for caregivers of persons with TBI (Carlozzi, Lange, et al., 2019). For the current analysis, TBI-CareQOL measures of Caregiver Specific Anxiety (Carlozzi, Kallen, Sander, et al., 2019), which assesses feelings of worry related to the behavior and well-being of the person with TBI, Caregiver Strain (Carlozzi, Kallen, Ianni, Hahn, et al., 2019), which measures feelings of being overwhelmed or stressed in relation to the caregiver role, Feeling Trapped (Carlozzi, Kallen, Hanks, Hahn, et al., 2019), which assesses feelings of being unable to do things due to caregiver responsibilities, and Feelings of Loss-Self (Carlozzi, Kallen, Ianni, Sander, et al., 2019), which measures feelings of sorrow over personal changes that have resulted from being in the caregiving role. Each item in the aforementioned item banks is on a five-point Likert-type scale ranging from 1 (never) to 5 (always). Each of these measures were administered as computer adaptive tests (CATs), where participants completed items depending on their previous responses in an order that maximizes reliability. Each item in the aforementioned item banks is on a five-point Likert-type scale ranging from 1 (never) to 5 (always). As such, raw values are not accurately representative of participant responses. TBI-CareQOL measures are scored on a T metric with a mean of 50 (SD = 10); higher scores indicate worse outcomes.

Patient-Reported Outcomes Measurement Information System (PROMIS; Cella et al., 2010).

PROMIS was developed to examine a variety of HRQOL domains in the general population. The reliability and validity of PROMIS measures have been demonstrated in caregivers of persons with TBI (Carlozzi, Hanks, et al., 2019; Carlozzi, Ianni, Lange, et al., 2019; Carlozzi, Ianni, Tulsky, et al., 2019). For the current analysis, PROMIS measures of Anxiety, Depression, Fatigue, Anger, Ability to Participate in Social Roles and Activities (SRA), Emotional Support, Satisfaction with SRA, and social isolation were used. Items are rated on a five-point Likert-type scale ranging from 1 (never/not at all) to 5 (always/very much). Each of these measures were administrated using CATs. As such, raw values are not accurately representative of participant responses. Items are rated on a five-point Likert-type scale ranging from 1 (never/not at all) to 5 (always/very much). Each PROMIS measure is scored on a T metric with a mean of 50 (SD = 10); higher scores indicate more of the named construct being measured (i.e., higher depression scores mean more depression).

Caregiver Appraisal Scale (CAS; Lazarus & Folkman, 1984).

The CAS is a 47-item questionnaire that measures both positive and negative perceptions of the caregiving role. Each item is rated on a five-point Likert-type scale ranging from 1 (strongly disagree) to 5 (strongly agree). Struchen and colleagues (2002) previously validated the measure in caregivers of persons with TBI, ultimately using 35 items of which were summed under four identified CAS domains. This scoring system was later replicated and used with moderate to severe TBI in Hanks et al. (2007). CAS domains include Perceived Burden (e.g., perceived negative impact of caregiving on the caregiver’s life), Caregiver Satisfaction (e.g., positive or negative fulfillment from caregiving role), Caregiver Ideology (e.g., identified reasons for being a caregiver such as family tradition), and Caregiver Mastery (e.g., caregiving self-efficacy). Higher scores on the CAS indicate more positive aspects of being a caregiver (e.g., higher burden scores mean less burden).

Analysis Plan

Data analysis for the current study was conducted using SAS 9.4 (SAS Institute Inc., 2013). Demographic variables were calculated using means and standard deviations for continuous variables and percentages for categorical variables. Pearson correlations were conducted to examine the relationship between the MPAI-4, EWBS, RWBS, and 16 HRQOL measures. HRQOL measures included four TBI-CareQOL measures (i.e., Caregiver–Specific Anxiety, Caregiver Strain, Feeling Trapped, Feelings of Loss–Self), eight PROMIS measures (i.e., Anxiety, Depression, Fatigue, Anger, Ability to Participate in SRA, Emotional Support, Satisfaction with SRA, and Social Isolation), and four CAS domains (i.e., Perceived Burden, Caregiver Satisfaction, Caregiver Ideology, and Caregiver Mastery). Correlations were also conducted between select demographic variables (military status of the person with TBI, caregiver gender, caregiver race, and relationship to the person with TBI) and HRQOL outcomes. Based on preliminary analyses, these four demographic variables were then included in subsequent models. Thirty-two multiple linear regression models, including military status of the person with TBI, caregiver gender, caregiver race, and relationship to the person with TBI, were analyzed to determine if spiritual well-being (EWBS/RWBS) moderated the association between functional status (MPAI-4) of the person with TBI (16 regressions each) and caregiver’s HRQOL. These models included two main fixed effects (i.e., EWBS/RWBS and MPAI-4), and an interaction between EWBS/RWBS and MPAI-4 to examine the slope change between the two continuous variables. For, EWBS, simple (conditional) slope estimates were tested at varying levels to determine at which point the slope of MPAI-4 became insignificant (Aiken & West, 1991). A Benjamini–Hochberg procedure with a false discovery rate of 10% was utilized to correct for multiple comparisons (Benjamini & Hochberg, 1995).

Results

We examined data for 335 caregivers. Demographic, injury, and caregiving statistics are presented in Table 1. Correlation analyses between demographic characteristics and the 16 HRQOL subdomains were largely significant (Tables 2 and 3). For TBI-CareQOL measures (Caregiver–Specific Anxiety, Caregiver Strain and Feeling Trapped and Feelings of Loss–Self), mean scores were higher for military/veterans with TBI compared to civilians with TBI (p < .001) and for male caregivers as compared to female caregivers (p < .003). For all four TBI-CareQOL measures, spouses reported significantly higher scores as compared to other family members (p < .001). Notably, spouses reported significantly higher scores on the measure of Feeling Trapped relative to all other caregivers (parents, other family, nonfamily; p < .001). Caregivers identifying as White reported higher scores as compared with caregivers identifying as Black for Caregiver Strain and Feelings of Loss–Self (p < .005). Both caregivers identifying as White or Other race reported higher scores for Feeling Trapped as compared with those identifying as Black (p < .005). Caregiver specific anxiety did not differ by caregiver racial identification.

Table 1.

Demographic Information

Characteristic	N = 335
Caregiver descriptive data
Age, M (SD)	47.1 (14.5)
Years in caregiver role, M (SD)	7.4 (4.6)
Gender, %
Male	14.6
Female	85.4
Race, %
White	77.3
Black	14.3
Other	8.4
Ethnicity, %
Non-Hispanic	90.1
Hispanic/Latino	9.9
Relationship, %
Spouse	46.9
Parent	28.7
Other family	17.9
Other	2.6
Education, %
Less than high school	5.7
High school/equivalent	13.4
More than high school	80.9
Person with injury descriptive data
Age, M (SD)	41.5 (13.1)
Time since injury, M (SD)	8.9 (6.3)a
MPAI-4 T score, M (SD)	51.8 (14.7)
Gender, %
Male	84.4
Female	15.6
Severity, %
Mild	.6
Complicated mild	16.1
Moderate	12.2
Severe	40.6
Penetrating	3.9
Unknown	26.6a
Cause of injury, %
Motor vehicle accident	43.2
Bicycle accident	2.7
Pedestrian struck by motor vehicle	5.7
Fall	12.6
Assault/gunshot	12.6
Struck by/thrown against object	14.1
Other	5.5
Unknown	3.6
Patient-reported outcomes, M (SD)
EWBS	44.5 (9.1)
RWBS	45.6 (13.7)
TBI-CareQOL-Caregiver Specific Anxiety	53.2 (9.7)
TBI-CareQOL-Caregiver Strain	50.5 (10.5)
TBI-CareQOL-Feeling Trapped	49.7 (9.3)
TBI-CareQOL-Feelings of Loss-Self	49.3 (10.5)
PROMIS-Anxiety	53.5 (10.7)
PROMIS-Depression	52.5 (9.8)
PROMIS-Fatigue	54.5 (10.6)
PROMIS-Anger	52.2 (10.2)
PROMIS-Ability to Participate in SRA	49.5 (10.7)
PROMIS-Emotional Support	46.9 (10.1)
PROMIS-Satisfaction with SRA	46.9 (9.7)
PROMIS-Social Isolation	50.1 (11.3)
CAS-Perceived Burden	45.8 (14.6)
CAS-Satisfaction	43.4 (6.1)
CAS-Ideology	14.6 (3.8)
CAS-Mastery	13.6 (3.0)

Note. For this sample, motor vehicle accidents include accidents/roll- overs resulting from improvised explosive devices. MPAI-4 = Mayo- Portland Adaptability Inventory; EWBS = Existential Well-Being subscale; TBI-CareQOL = Quality of Life in Caregivers of Traumatic Brain Injury; PROMIS = Patient-Reported Outcomes Measurement Information System; CAS = Caregiver Appraisal Scale.

^aAvailable medical records for the military sample did not characterize severity or time since injury (n = 79) and caregivers provided other demographic information.

Table 2.

Means (Standard Deviations in Parentheses) Based on Military Status and Relationship to the Person With TBI for HRQOL Measures

	Military status			Relationship with person with TBI
Measure	Military (n = 151)	Civilian (n = 184)	p	Spouse (n = 157)	Parent (n = 96)	Other family (n = 59)	Nonrelated (n = 22)	p
TBI-CareQOL
Anxiety	56.6(8.1)	50.4 (10.0)	<.001	55.3 (9.3)	52.3 (8.9)	50.2 (10.9)	49.9 (9.0)	<.001b
Caregiver Strain	54.8 (8.9)	47.1 (10.5)	<.001	53.8 (9.7)	48.9 (10.7)	45.7 (11.1)	47.7 (6.7)	<.001a,b
Feeling Trapped	54.8 (7.9)	45.6 (8.3)	<.001	52.5 (8.9)	47.5 (8.4)	45.0 (8.8)	46.2 (7.3)	<.001a,b,c
Feelings of Loss	52.8 (9.5)	46.5 (10.5)	<.001	51.9 (10.1)	48.7 (10.2)	45.1 (10.7)	45.9 (10.1)	<.001b
PROMIS
Anxiety	56.1 (10.5)	51.4(10.5)	<.001	56.0 (10.0)	52.2 (10.6)	49.9 (11.6)	51.2(10.4)	.001a,b
Depression	55.1 (9.3)	50.4 (9.7)	<.001	55.0 (8.9)	51.2(9.9)	49.1 (10.6)	50.1 (9.2)	<.001a,b
Fatigue	59.7 (10.4)	50.9 (9.4)	<.001	58.2 (10.1)	52.6 (10.3)	49.2 (10.0)	50.2 (6.7)	<.001a,b,c
Anger	54.1 (10.2)	50.7 (9.9)	.002	54.5 (9.7)	50.6 (9.8)	49.6(11.2)	50.3 (9.2)	.001a,b
Participate in SRA	45.1 (10.1)	53.1 (9.8)	<.001	45.4 (10.2)	52.3 (9.8)	54.3 (10.7)	53.1 (7.1)	<.001a,b,c
Emotional Support	44.0 (9.3)	49.3 (10.2)	<.001	44.6 (9.2)	48.9 (10.1)	47.9 (11.7)	52.1 (8.3)	<.001a,b
Satisfaction with SRA	44.3 (8.6)	49.1 (10.0)	<.001	44.2 (8.4)	48.4 (10.1)	50.2(11.3)	51.0(6.4)	<.001a,b,c
Social Isolation	54.5 (11.5)	46.5 (9.7)	<.001	54.2 (11.3)	47.1 (9.6)	46.2(11.3)	44.5 (7.5)	<.001a,b,c
CAS
Perceived Burden	38.9 (13.0)	51.4(13.5)	<.001	40.2 (14.1)	49.4 (13.5)	52.4 (13.7)	51.8 (11.3)	<.001a,b,c
Satisfaction	44.2 (6.2)	42.8 (6.0)	.04	43.2 (6.3)	44.3 (5.5)	42.9 (7.1)	43.4 (4.4)	.47
Ideology	15.4 (3.6)	16.0 (3.9)	.001	14.8 (3.8)	14.4 (3.8)	14.4 (3.7)	14.9 (4.5)	.85
Mastery	13.4 (2.8)	13.8 (3.1)	.18	13.8 (3.0)	13.5 (3.1)	13.4 (3.0)	13.4 (2.9)	.82

Note. TBI-CareQOL = Quality of Life in Caregivers of Traumatic Brain Injury; HRQOL = health-related quality of life; PROMIS = Patient-Reported Outcomes Measurement Information System; CAS = Caregiver Appraisal Scale; SRA = Social Roles and Activities. Values with different subscripts indicate significant group differences, which are as follows:

^aSpouses differ from parents.

^bSpouses differ from other family.

^cSpouses differ from nonrelatives.

Table 3.

Means (Standard Deviations in Parentheses) Based on Caregiver Gender and Caregiver Race for HRQOL Measures

	Caregiver gender			Caregiver race
Measure	Male (n = 49)	Female (n = 286)	p	White (n = 259)	Black (n = 48)	Other race (n = 28)	p
TBI-CareQOL
Anxiety	49.3 (9.2)	52.8 (9.6)	.002	53.6 (9.4)	50.5 (10.7)	53.6 (10.2)	.13
Caregiver Strain	46.0 (7.6)	51.3 (10.8)	<.001	45.8 (10.2)	45.8 (11.0)	51.4 (10.8)	.004a
Feeling Trapped	45.9 (6.9)	50.4 (9.5)	.002	50.3 (9.3)	45.7 (8.0)	51.4(9.9)	.004a,b
Feelings of Loss	44.7 (10.0)	50.1 (10.4)	<.001	50.2 (10.3)	44.3 (10.5)	50.2 (10.8)	.002a
PROMIS
Anxiety	56.1 (10.5)	45.9 (9.5)	54.8 (10.4)	54.1 (10.7)	49.4 (10.6)	55.0 (10.1)	.02a
Depression	55.1 (9.3)	45.6 (8.8)	53.7 (9.5)	53.1 (9.8)	47.3 (9.2)	55.8 (8.1)	<.001a,b
Fatigue	59.7 (10.4)	48.5 (7.6)	55.5 (10.7)	55.1 (10.9)	50.2 (9.1)	55.8 (8.9)	.01a
Anger	54.1 (10.2)	47.9 (9.5)	53.0(10.1)	52.5 (10.2)	49.9 (9.7)	53.9 (10.5)	.19
Participate in SRA	45.1 (10.1)	54.8 (8.7)	48.5 (10.7)	48.8 (10.8)	54.3 (8.4)	47.5 (11.3)	.003a,b
Emotional Support	44.0 (9.3)	48.3 (9.8)	46.6 (10.2)	47.0 (10.3)	47.2 (10.2)	45.4 (8.9)	.70
Satisfaction with SRA	44.3 (8.6)	49.8 (7.7)	46.4 (9.9)	46.5 (9.6)	48.9 (10.3)	47.6 (9.2)	.26
Social Isolation	54.5 (11.5)	45.0 (9.2)	50.9 (11.4)	50.6(11.5)	46.6 (8.7)	51.4 (12.1)	.06
CAS
Perceived Burden	38.9 (13.0)	51.5 (11.1)	44.8 (15.0)	45.3 (15.0)	50.3 (11.9)	42.7 (14.6)	.04
Satisfaction	44.2 (6.2)	42.8 (5.8)	43.5 (6.2)	44.0 (6.0)	42.1 (6.1)	41.0(7.1)	.01a
Ideology	15.4 (3.6)	14.5 (3.8)	15.5 (3.6)	14.4 (3.7)	15.9 (4.1)	14.3 (4.0)	.03a
Mastery	13.4 (2.8)	12.4(3.1)	13.8 (3.0)	13.8 (3.1)	12.7 (2.4)	13.4(3.3)	.06

Note. TBI-CareQOL = Quality of Life in Caregivers of Traumatic Brain Injury; HRQOL = health-related quality of life; PROMIS = Patient-Reported Outcomes Measurement Information System; CAS = Caregiver Appraisal Scale; SRA = Social Roles and Activities.

^a,bindicate significant group differences.

For PROMIS measures, mean scores were higher for military/veterans with TBI compared with civilians with TBI for Anxiety, Depression, Fatigue, Anger, Social Isolation, and lower for Perceived Emotional Support, Ability to Participate in SRA and Satisfaction with SRA (ps < 0.003). Similarly, male caregivers reported higher scores relative to female caregivers for Anxiety, Depression, Fatigue, Anger, Social Isolation (p < .001), and lower scores for Ability to Participate in SRA and Satisfaction with SRA (p < .03). Sex differences were not found for Emotional Support. For caregiver type, spouses reported higher scores for PROMIS Fatigue, Social Isolation and lower scores for Ability to Participate in SRA and Satisfaction with SRA as compared to all other caregivers (parents, other family, nonfamily). For all other PROMIS measures spouses reported higher scores for Anxiety, Depression and Anger, and lower for Emotional Support in comparison to parents and other family, but not nonfamily caregivers. Caregivers identifying as White reported higher scores as compared to caregivers identifying as Black for Anxiety and Fatigue (p < .05). Both caregivers identifying as White or Other race reported higher scores for Depression and lower scores for Ability to Participate in SRA in comparison to caregivers identifying as Black (p < .004). Anger, Social Isolation, Emotional Support, and Satisfaction with SRA were unrelated to caregiver racial identification.

For CAS measures, mean scores were lower for military/veterans with TBI compared with civilians with TBI for Perceived Burden and Ideology and higher for Satisfaction, (ps < 0.05). Mastery was unrelated to TBI population. Male caregivers reported higher scores relative to female caregivers for Perceived Burden (p = .003), but lower scores for Ideology and Mastery (p = .05). Satisfaction did not differ between male and female caregivers. Lower scores for Perceived Burden were also noted for spouses relative to all other caregivers (parents, other family, nonfamily; p < .001). Caregiver type was unrelated to all other CAS measures. Caregivers identifying as White reported higher scores as compared to caregivers identifying as Black for Satisfaction, and lower scores for ideology (ps < 0.05). Perceived Burden and Mastery were unrelated to caregiver racial identification. Across measures, there were no differences between parents and other family, parents and nonrelatives, or other family and nonrelatives for any HRQOL measures; there were no differences between White race and other race for any HRQOL measures.

Correlation analyses indicated that MPAI-4 was significantly and moderately associated with each of the 16 HRQOL subdomains, except for CAS Satisfaction (r = −0.03; Table 4). EWBS was moderately correlated with each of the HRQOL measures except for CAS Ideology (r = .00). RWBS had fewer significant correlations, all small effects, with no correlation with PROMIS Fatigue (r = −0.06), Ability to Participate in SRA (r = .08), Satisfaction with SRA (r = .09), or CAS Mastery (r = .02).

Table 4.

MPAI-4, Existential Well-Being, and Outcome Measure Correlations

	Pearson r
Measure	MPAI-4	EWBS	RWBS
TBI-CareQOL
Caregiver Specific Anxiety	.61	−.32	−.14
Caregiver Strain	.58	− .40	−.12
Feeling Trapped	.67	− .40	−.15
Feelings of Loss	.58	−.52	−.16
PROMIS
Anxiety	.38	−.45	−.12
Depression	.38	−.51	−.13
Fatigue	.47	− .40	− .06*
Anger	.32	− .43	−.15
Ability to Participate in SRAa	−.52	.45	.08*
Emotional Supporta	−.40	.40	.14
Satisfaction with SRAa	−.44	.46	.09*
Social Isolation	.49	−.53	−.15
CAS
Perceived Burdena	−.63	.51	.11
Satisfactiona	−.03*	.40	.14
Ideologya	.20	.00*	.16
Masterya	−.29	.36	.02*

Note. MPAI-4 = Mayo-Portland Adaptability Inventory (4th ed.); EWBS = Existential Well-Being subscale; RWBS = Religious Well- Being subscale; TBI-CareQOL = Quality of Life in Caregivers of Persons with Traumatic Brain Injury; PROMIS = Patient-Reported Outcomes Measurement Information System; SRA = Social Roles and Activities; CAS = Caregiver Appraisal Scale.

^aHigher scores indicate better HRQOL.

^*p > .05.

For EWBS analyses, greater functional impairment of the person with injury was associated with less favorable caregiver HRQOL outcomes (TBI-CareQOL, PROMIS, CAS). Noteworthy, the relationship between functional impairment and HRQOL significantly weakened as EWBS increased (see Figure 1). Specific linear regressions showed significant interactions between MPAI-4 and EWBS for TBI-CareQOL measures of Caregiver-Specific Anxiety, Caregiver Strain and Feeling Trapped (p < .05; Table 5), but not for Feelings of Loss–Self. For PROMIS measures, MPAI-4 and EWBS interactions were significant for mood symptoms including, Anxiety, Depression, Fatigue, Anger, and Social Isolation, but not coping related measures, such as Emotional Support, Ability to Participate in SRA, or Satisfaction with SRA (see Table 5). For CAS domains, EWBS moderated the effect of MPAI-4 on Perceived Burden, the negative impact of caregiving, but not for measures of positive aspects of caregiving, Satisfaction, Ideology, or Mastery (see Table 5).

Figure 1.

Functional Impairment and Health Related Quality of Life in Caregivers. TBI-CareQOL = quality of life in caregivers of persons with traumatic brain injury; PROMIS = Patient-Reported Outcomes Measurement Information System; MPAI-4 = Mayo-Portland Adaptability Inventory (4th ed.).

Table 5.

Linear Regression for MPAI-4 and Existential Well-Being

HRQOL subdomain	β	SE	t	p
Caregiver Specific Anxiety (TBI-CareQOL)
MPAI-4	.95	.16	3.92	<.001
EWBS	.11	.18	.63	.53
MPAI-4 × EWBS	−.44	.003	−1.76	.08
Caregiver Strain (TBI-CareQOL)
MPAI-4	1.28	.16	5.57	<.001
EWBS	.29	.18	1.85	.07
MPAI-4 × EWBS	−.88	.003	−3.71	<.001
Feeling Trapped (TBI-CareQOL)
MPAI-4	1.09	.13	5.34	<.001
EWBS	.15	.14	1.09	.28
MPAI-4 × EWBS	−.62	.003	−2.96	.003
Feelings of Loss (TBI-CareQOL)
MPAI-4	.75	.16	3.42	<.001
EWBS	− .21	.17	−1.4	.16
MPAI-4 × EWBS	−.31	.003	−1.41	.16
Anxiety (PROMIS)
MPAI-4	.74	.18	2.91	.004
EWBS	− .06	.20	−.34	.74
MPAI-4 × EWBS	−.51	.004	−1.99	<.001
Depression (PROMIS)
MPAI-4	.73	.16	3.07	.002
EWBS	−.11	.17	−.69	.49
MPAI-4 × EWBS	−.55	.003	−2.27	.02
Fatigue (PROMIS)
MPAI-4	.89	.18	3.64	<.001
EWBS	.09	.20	.54	.59
MPAI-4 × EWBS	− .63	.003	−2.50	.01
Anger (PROMIS)
MPAI-4	.77	.19	2.83	.005
EWBS	.00	.21	.02	.99
MPAI-4 × EWBS	− .60	.004	−2.16	.03
Ability to Participate in SRA (PROMIS)a
MPAI-4	−.79	.17	−3.42	<.001
EWBS	.05	.19	.29	.77
MPAI-4 × EWBS	.47	.003	1.96	.05
Emotional Support (PROMIS)a
MPAI-4	.20	.19	.76	.45
EWBS	.63	.21	3.39	.001
MPAI-4 × EWBS	−.49	.004	−1.79	.07
Satisfaction with SRA (PROMIS)a
MPAI-4	− .43	.17	−1.70	.09
EWBS	.29	.19	1.65	.10
MPAI-4 × EWBS	.14	.003	.53	.59
Social Isolation (PROMIS)
MPAI-4	.84	.18	3.64	<.001
EWBS	− .06	.19	− .40	.69
MPAI-4 × EWBS	−.56	.003	−2.41	.02
Burden (CAS)a
MPAI-4	−.97	.20	−4.80	<.001
EWBS	.02	.22	.13	.90
MPAI-4 × EWBS	.55	.004	2.65	.01
Satisfaction (CAS)a
MPAI-4	−.34	.12	−1.22	.22
EWBS	.17	.13	.89	.38
MPAI-4 × EWBS	.38	.002	1.31	.19
Ideology (CAS)a
MPAI-4	−.05	.08	−.18	.86
EWBS	−.09	.09	− .42	.68
MPAI-4 × EWBS	.22	.002	.72	.47
Mastery (CAS)a
MPAI-4	−.34	.06	−1.21	.23
EWBS	.23	.06	1.18	.24
MPAI-4 × EWBS	.12	.001	.41	.69

Note. Regressions are adjusted for military status of the person with traumatic brain injury (TBI), relationship to the person with TBI, caregiver gender, and caregiver race; TBI-CareQOL = Quality of Life in Caregivers of Persons with Traumatic Brain Injury; HRQOL = health-related quality of life; PROMIS = Patient-Reported Outcomes Measurement Information System; CAS = Caregiver Appraisal Scale; MPAI-4 = Mayo-Portland Adaptability Inventory (4th ed.); EWBS = Existential Well-Being subscale; SRA = Social Roles and Activities.

^aHigher scores indicate better HRQOL.

For RWBS, although the number of significant relationships were limited (see Table 6) relative to EWBS interactions, greater functional impairment of the person with injury was again associated with less favorable caregiver HRQOL outcomes (TBI-CareQOL, PROMIS, CAS) with higher RWBS scores associated with a weaker effect of MPAI-4 on HRQOL outcomes. Specific linear regressions showed significant interactions between functioning and religious well-being for TBI-CareQOL Caregiver Strain, PROMIS Depression, and PROMIS Anger.

Table 6.

Linear Regression for MPAI-4 and Religious Well-Being

HRQOL subdomain	β	SE	t	p
Caregiver Specific Anxiety (TBI-CareQOL)
MPAI-4	.87	.13	4.45	<.001
RWBS	.21	.14	1.05	.29
MPAI-4 × RWBS	−.39	.002	−1.55	.12
Caregiver Strain (TBI-CareQOL)
MPAI-4	1.04	.14	5.32	<.001
RWBS	.47	.15	2.39	.02
MPAI-4 × RWBS	−.70	.003	−2.77	.01
Feeling Trapped (TBI-CareQOL)
MPAI-4	.85	.11	4.94	<.001
RWBS	.22	.12	1.26	.21
MPAI-4 × RWBS	−.38	.002	−1.72	.09
Feelings of Loss (TBI-CareQOL)
MPAI-4	.84	.14	4.26	<.001
RWBS	.18	.15	.89	.37
MPAI-4 × RWBS	−.38	.003	−1.50	.14
Anxiety (PROMIS)
MPAI-4	.73	.16	3.34	<.001
RWBS	.27	.17	1.25	.21
MPAI-4 × RWBS	−.51	.003	−1.81	.07
Depression (PROMIS)
MPAI-4	.77	.14	3.58	<.001
RWBS	.32	.15	1.51	.13
MPAI-4 × RWBS	−.60	.002	−2.13	.03
Fatigue (PROMIS)
MPAI-4	.71	.15	3.41	< 001
RWBS	.31	.16	1.49	.14
MPAI-4 × RWBS	− .43	.003	−1.59	.11
Anger (PROMIS)
MPAI-4	.75	.16	3.29	.001
RWBS	.32	.17	1.41	.16
MPAI-4 × RWBS	− .61	.003	−2.07	.04
Ability to Participate in SRA (PROMIS)a
MPAI-4	− .68	.14	−3.36	<.001
RWBS	− .21	.16	−1.06	.29
MPAI-4 × RWBS	.30	.003	1.16	.25
Emotional Support (PROMIS)a
MPAI-4	.00	.15	.01	.99
RWBS	.46	.17	2.08	.04
MPAI-4 × RWBS	− .48	.003	−1.66	.10
Satisfaction with SRA (PROMIS)a
MPAI-4	− .27	.15	−1.24	.22
RWBS	.20	.16	.89	.38
MPAI-4 × RWBS	−.18	.003	−.65	.52
Social Isolation (PROMIS)
MPAI-4	.72	.16	3.43	<.001
RWBS	.20	.17	.98	.33
MPAI-4 × RWBS	− .41	.00	−1.52	.13
Burden (CAS)a
MPAI-4	−.90	.18	−4.92	<.001
RWBS	−.30	.19	−1.64	.10
MPAI-4 × RWBS	.46	.003	1.94	.05
Satisfaction (CAS)a
MPAI-4	−.15	.10	− .63	.53
RWBS	.11	.11	.45	.66
MPAI-4 × RWBS	.09	.003	.28	.78
Ideology (CAS)a
MPAI-4	.35	.06	1.52	.13
RWBS	.41	.07	1.74	.08
MPAI-4 × RWBS	− .27	.001	−.90	.37
Mastery (CAS)a
MPAI-4	−.50	.05	−2.13	.03
RWBS	− .20	.05	−.86	.39
MPAI-4 × RWBS	.26	.001	.84	.40

Note. Regressions are adjusted for military status of the person with TBI, relationship to the person with TBI, caregiver gender, and caregiver race; TBI-CareQOL = Quality of Life in Caregivers of Persons with Traumatic Brain Injury; HRQOL = health-related quality oflife; PROMIS = Patient- Reported Outcomes Measurement Information System; CAS = Caregiver Appraisal Scale; MPAI-4 = Mayo-Portland Adaptability Inventory (4th ed.); RWBS = Religious Well-Being subscale; SRA = Social Roles and Activities.

^aHigher scores indicate better HRQOL.

For models with significant interactions between functioning and existential well-being, cut-points were identified to determine at which point MPAI-4 was no longer associated with adverse HRQOL after EWBS was taken into account (see Table 7). For example, when EWBS equaled 58 (i.e., excellent existential well-being), the association between MPAI-4 and PROMIS Depression became negligible. Thus, higher existential well-being reduced the impact of the care recipient’s functional impairment on caregiver’s anxiety. For TBI-CareQOL Caregiver Specific Anxiety, Caregiver Strain, Feeling Trapped, PROMIS Fatigue, Social Isolation, and CAS Perceived Burden, simple slopes analyses determined that MPAI-4 had negative effects on HRQOL regardless of EWBS or RWBS score, but this relationship was significantly weakened as spiritual well-being increased.

Table 7.

Existential and Religious Well-Being Cut-off Values

	Cut-off value (s)
Outcome	EWBS	RWBS
TBI-CareQOL
Caregiver Specific Anxiety	Association weakens but does not become insignificant	Association weakens but does not become insignificant
Caregiver Strain	Association weakens but does not become insignificant
Feeling Trapped	Association weakens but does not become insignificant)
PROMIS
Anxiety	Association weakens but does not become insignificant	Association weakens but does not become insignificant
Depression	Above 57
Fatigue	Association weakens but does not become insignificant
Anger	Above 55	Association weakens but does not become insignificant
Social Isolation	Association weakens but does not become insignificant
CAS
Perceived Burden	Association weakens but does not become insignificant

Note. Cut-off values represent the existential or religious well-being score value where MPAI-4 is no longer associated with poorer HRQOL. TBI-CareQOL = Quality of Life in Caregivers of Persons with Traumatic Brain Injury; PROMIS = Patient Reported Outcomes Measurement Information System; CAS = Caregiver Appraisal Scale; MPAI-4 = Mayo-Portland Adaptability Inventory (4th ed.); EWBS = Existential Well-Being subscale; RWBS = Religious Well-Being subscale; SRA = Social Roles and Activities.

Discussion

The findings of this study show that caregiving experiences are not universal across demographic and etiology of injury groups. The greatest emotional and psychological adjustment to caregiving was evident in caregivers who were spouses, men, and those involved with a military service person. Spouses in particular reported feeling more trapped in their situation and having greater burden than other types of caregivers (e.g., parents, friends). Caregivers identifying as White or Other race reported higher emotional distress than those who self-identified as Black. It is possible that extended family caregiving is more common within the Black community, and therefore the expectations and emotional reactions that they experience might be different than for those of other racial groups. As such, there might be cultural or demographic factors that rehabilitation professionals need to be aware of when working with diverse populations.

Caregivers of those who were injured in the military appear to have a very different emotional experience than civilian caregivers. Such individuals reported higher levels of anxiety, depression, fatigue, anger, and social isolation. They report lower levels of social support, as well as decreased ability to participate in and gain satisfaction from social activities. Overall, their reaction to caregiving appears to be one of emotional distress and social isolation, with the perception that they have very little emotional support from others. Paradoxically, although they experience more burden than civilian caregivers, they also report higher levels of satisfaction.

Functional impairment was associated with worse HRQOL for caregivers of those with TBI, but existential well-being was found to moderate this relationship. Specifically, the association between functional impairment and HRQOL was weakened when caregivers endorsed higher levels of existential well-being, and less so for religious well-being. These findings are important given the fact that spiritual well-being has been understudied in caregivers of persons with TBI. The empirical literature would indicate that spirituality is associated with better mental health and quality of life outcomes in caregivers of those with other medical conditions in a linear manner (e.g., the greater the spirituality, the better the HRQOL in the caregiver), but this study showed that this relationship is more complicated in TBI. In this study, the functional status of the person receiving care moderated the association between spiritual well-being and HRQOL. For CAS domains, EWBS moderated the effect of MPAI-4 on negative aspects of caregiving (Perceived Burden), but not for positive aspects of caregiving (Satisfaction, Ideology or Mastery).

One possible explanation for the study’s findings is that caregivers of those with severe TBI might lose hope for improvement over the years, as they are forced to accept that their loved one might not recover in the manner that they had hoped. They might be resigned to accept the unfortunate reality of a truncated recovery rather than a full recovery or much improved outcome. Caregivers of those with less severe TBI might still be struggling and hoping for improvements that might or might not be fully achieved. The two groups might live different realities and their adjustments could be quite different. This was not an empirical question that this study was designed to address, but rather is an interesting hypothesis for further exploration.

Strengths of this study include a large, diverse sample recruited from multiple sites and types of care settings that enhance generalizability of study findings. It should be noted that the sample was highly educated, thus limiting generalizability to those with lower education. Other limitations of the study include a lack of objective TBI severity data from the military sample. Additionally, the veteran sample included persons with mild TBI, and mild TBI typically results in good recovery and a lack of long-term sequelae. Surprisingly, the military caregivers in this sample reported more symptomatology than the civilian caregivers, and although differential effects were found for the caregiver groups and documented, some might think that combining the groups in the first place might be less than optimal. There are unique incentives in the veterans system for ensuring long-term health care, as well as additional comorbid factors that might account for worse psychological outcomes for the caregivers of this mild TBI group.

Consistent with most literature using spiritual well-being scales, the current Spiritual Well-Being Scale or otherwise, we did not ask participants about religious affiliation. Although considered a potential limitation, the current study was not designed to assess differential effects of religious affiliation or congregational membership on spiritual well-being (distinct from spirituality/religion) and HRQOL, and in fact, chose to use a spiritual well-being scale specifically designed to assess the concept of religion and not specifics of any one religion. The SWB scale instructions are consistent with this approach and allow the participant to use a higher being as a referent rather than a religiously defined construct of God. That said, a closer look at our participant’s responses to religious well-being items indicates that our participants ranged in their level of religious well-being and the current study was limited in the ability to capture the underlying nature of this range, either in religious affiliation, lack of affiliation, or other circumstance.

Rehabilitation professionals working with the support system of the person with TBI, might need to be aware of the moderating effect of function on caregiver outcome. For those friends and family members that have loved ones with more impairment, their spiritual beliefs and commitment might be more important to psychological function, perception about the caregiving role, and experience of stress, than their caregiving counterparts who have a loved one with less functional impairment. Such issues can be included as part of the formal rehabilitation treatment plan for the person with TBI’s whole support system and might involve nontraditional rehabilitation team members such as chaplains or spiritual guides.

Impact and Implications.

Spirituality as a coping mechanism has been proposed as a good predictor of outcomes in persons with TBI, but it has not been examined regarding caregiver outcomes. This study shows that the relationship between spirituality and health-related quality of life for caregivers of persons with TBI is more complicated than might be expected. Level of impairment in the person with brain injury has a moderating effect for spirituality and health-related quality of life in caregivers, such that caregivers of those with more impairment might rely more on spirituality for better quality of life. Knowledge of this effect can be helpful to caregivers as they plan for their own needs and self-care during the recovery process of their loved ones with TBI.