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Journal of Clinical Sleep Medicine : JCSM : Official Publication of the American Academy of Sleep Medicine logoLink to Journal of Clinical Sleep Medicine : JCSM : Official Publication of the American Academy of Sleep Medicine
. 2022 Nov 1;18(11):2577–2588. doi: 10.5664/jcsm.10164

Caregiver sleep impairment and service member and veteran adjustment following traumatic brain injury is related to caregiver health-related quality of life

Tracey A Brickell 1,2,3,4,, Megan M Wright 1,2,4, Jamie K Sullivan 1,2,4, Nicole V Varbedian 1,2,4, Kathryn A Nose 1,2,4, Lauren M Rather 1,2,4, Nicole K Tien 1,2,4, Louis M French 1,2,3, Rael T Lange 1,2,4,5
PMCID: PMC9622982  PMID: 35912703

Abstract

Study Objectives:

To examine the relationship between caregiver sleep impairment and/or service member/veteran (SMV) adjustment post-traumatic brain injury, with caregiver health-related quality of life (HRQOL).

Methods:

Caregivers (n = 283) completed 18 measures of HRQOL, sleep impairment, and SMV adjustment. Caregivers were classified into 4 sleep impairment/SMV adjustment groups: 1) Good Sleep/Good Adjustment (n = 43), 2) Good Sleep/Poor Adjustment (n = 39), 3) Poor Sleep/Good Adjustment (n = 55), and 4) Poor Sleep/Poor Adjustment (n = 146).

Results:

The Poor Sleep/Poor Adjustment group reported significantly worse scores on most HRQOL measures and a higher prevalence of clinically elevated T-scores (≥ 60T) on the majority of comparisons compared to the other 3 groups. The Good Sleep/Poor Adjustment and Poor Sleep/Good Adjustment groups reported worse scores on the majority of the HRQOL measures and a higher prevalence of clinically elevated scores on 7 comparisons compared to the Good Sleep/Good Adjustment group. Fewer differences were found between the Good Sleep/Poor Adjustment and Poor Sleep/Good Adjustment groups. The Poor Sleep/Poor Adjustment group reported a higher prevalence of severe ratings for SMV Irritability, Anger, and Aggression compared to the Good Sleep/Poor Adjustment group.

Conclusions:

While the presence of either caregiver sleep impairment or poor SMV adjustment singularly was associated with worse caregiver HRQOL, the presence of both sleep impairment and poor SMV adjustment was associated with further impairment in HRQOL. Caregivers could benefit from sleep intervention. Treatment of SMVs neurobehavioral problems may improve the SMV’s recovery and lessen sleep problems, distress, and burden among their caregivers.

Citation:

Brickell TA, Wright MM, Sullivan JK, et al. Caregiver sleep impairment and service member and veteran adjustment following traumatic brain injury is related to caregiver health-related quality of life. J Clin Sleep Med. 2022;18(11):2577–2588.

Keywords: sleep impairment, military caregiver, service member veteran adjustment, traumatic brain injury


BRIEF SUMMARY

Current Knowledge/Study Rationale: Many caregivers of service members and veterans (SMVs) following traumatic brain injury report sleep impairment that has been related to poor caregiver health-related quality of life, as well as worse SMV functional ability and anger. The current study examined the relationship between caregiver sleep impairment and SMV adjustment post-traumatic brain injury with caregiver outcomes on measures of health-related quality of life.

Study Impact: Over half of caregivers of SMVs post-traumatic brain injury in this sample reported moderate to severe sleep impairment. While the presence of either caregiver sleep impairment or poor SMV adjustment singularly was associated with worse scores on caregiver health-related quality of life measures, the presence of both sleep impairment and poor SMV adjustment was associated with further impairment in health-related quality of life scores.

INTRODUCTION

Traumatic brain injury (TBI) is a common combat and noncombat injury among US military personnel.1 The majority of TBIs in the military are uncomplicated mild TBI with a return to full duty expected within a few weeks postinjury. Ongoing problems are more likely following a TBI of greater severity (complicated mild, moderate, severe, or penetrating TBI). However, many service members and veterans (SMVs) continue to self-report neurobehavioral symptoms up to 10 years postinjury, regardless of TBI severity.24 In a military setting, exposure to combat trauma can occur pre- and post-TBI and contribute to co-occurring mental health conditions such as posttraumatic stress disorder (PTSD), anxiety, depression, and anger/aggression.5 The variance in neurobehavioral symptoms reported following a remote TBI has been largely accounted for by comorbid conditions.24

Long-term caregiving support may be required from family members to assist SMVs with poor neurobehavioral outcomes post-TBI. Caregiving can be time intensive and stressful.6,7 A growing body of research has documented the adverse association of care provision with the caregiver’s physical, mental health, and social health-related quality of life (HRQOL).814 Worse caregiver HRQOL tends to be related to caring for SMV’s with poor neurobehavioral outcomes and comorbid mental health conditions post-TBI, but to a lesser degree SMV injury and military characteristics (eg, TBI severity, combat injury, time postinjury, military branch).9,11,1417 Caregiver and SMV sociodemographic variables (eg, household income, race, education, and age) have also had less of an adverse association with caregiver HRQOL, with a few exceptions such as associated financial and employment strain from caregiving.9,11,1416 Many caregivers report needing help managing the SMV’s mental health symptoms following a TBI,6,18 but the majority do not receive the help they need.18 Unmet needs related to the SMV’s mental health conditions have been associated with poor caregiver physical and mental health.18,19 Feelings of rejection have also been reported by caregivers of SMVs post-TBI. Perceived rejection has been attributed to internal attributions made regarding the SMVs emotional withdrawal and numbing symptoms and perceived stigma related to the SMV’s neurobehavioral symptoms from friends and family.8,20

One area of particular concern highlighted in recent research with caregivers of SMVs following TBI relates to sleep difficulties. During focus group discussions, almost half of caregivers of SMVs post-TBI reported sleep problems.21,22 Caregivers described not being able to fall asleep, stay asleep, waking up feeling tired, and using sleep medication. They also described difficulty sleeping due to the SMV’s own sleep problems and/or worrying about the SMV. Among intimate partner caregivers of SMVs following TBI, trouble sleeping was reported by 40% and over half reported feeling tired or having low energy.23 In another sample, caregivers of SMVs post-TBI averaged sleep impairment scores in the impaired range and reported clinically significant higher levels of sleep impairment compared to caregivers of civilians post-TBI, who averaged sleep impairment scores in the normal range.24 Sleep has a critical role in brain function and systemic physiology across many bodily systems. Problematic sleep has been associated with numerous acute and chronic health problems.25 Understanding the association of sleep impairment and HRQOL in caregivers of SMVs post-TBI is clearly an area of need.

In one of the most comprehensive studies to date, Carlozzi and colleagues10 examined the relationship of caregiver sleep impairment with 4 composite domains of HRQOL (physical, mental health, social, and caregiver-specific HRQOL) and care recipient functional ability in caregivers of SMVs and civilians post-TBI. Sleep impairment was related to worse scores on each HRQOL domain for both military and civilian caregivers. The relationship between sleep impairment and worse social HRQOL, but not other HRQOL domains, was moderated by worse caregiver ratings of the SMV’s overall functional ability. The relationship between sleep impairment, social HRQOL, and care recipient functional ability was not found for civilian caregivers. Carlozzi and colleagues proposed that differences between civilian and military caregivers may be related to the SMVs emotional and behavioral problems associated with co-occurring mental health conditions, particularly PTSD. However, the Adjustment Index, which includes items related to anxiety, depression, and aggression/anger, is 1 of 3 subscales on their functional ability measure (ie, Adjustment, Ability, and Participation) and was not examined more closely. In another study using this same sample of caregivers, the SMV’s self-reported anger predicted sleep impairment for military caregivers. Whereas for civilian care recipients, the SMV’s self-reported cognitive symptoms predicted civilian caregiver sleep impairment.24

In another sample of caregivers of SMVs following TBI, sleep impairment was more prevalent among those who reported low resilience relative to high resilience. Caregivers who reported low resilience also averaged sleep impairment scores in the impaired range compared to normal range for caregivers with higher resilience. Using the same functional ability measure as Carlozzi and colleagues,10 caregivers with lower resilience also rated worse SMV functional ability on the Adjustment Index, but not Ability Index (eg, sensory, motor, cognition items) or Participation Index (eg, money management, transportation, self-care items).14 When examining family functioning among intimate partner caregivers of SMVs post-TBI, sleep impairment was more prevalent among caregivers who reported unhealthy family functioning. However, the effect size for healthy vs unhealthy family functioning was small, a possible reflection of the relatively high prevalence of impaired sleep scores across both healthy (38.9%) and unhealthy (52.5%) family functioning groups. Unhealthy family functioning was also related to worse caregiver ratings of functional ability on both the Adjustment Index and Ability Index. However, the effect size for the Ability Index was small and not considered meaningful. Further exploratory analyses using select individual items on the Adjustment Index revealed that unhealthy family functioning was related to SMV anxiety, depression, and aggression/anger, but not pain and headache items.

In sum, many caregivers of SMVs following TBI report sleep impairment that has been related to worse physical, mental health, social, and caregiver-specific HRQOL domain scores. SMV Adjustment functional ability and anger has also been related to caregiver sleep impairment and HRQOL. The purpose of the current study was to further explore the association between caregiver sleep impairment and SMV functional ability specific to adjustment, both singularly (ie, poor caregiver sleep or poor SMV adjustment) and combined (ie, poor caregiver sleep impairment and poor SMV adjustment), on individual measures of physical, mental health, social, economic, and caregiver-specific HRQOL in a sample of caregivers of SMVs post-TBI. It was hypothesized that that presence of either poor caregiver sleep or poor SMV adjustment singularly would result in worse scores on caregiver HRQOL measures. It was further hypothesized that the presence of both poor caregiver sleep impairment and poor SMV adjustment would result in further impairment in HRQOL scores.

METHODS

Participants

Participants included 283 caregivers of SMVs following a TBI prospectively enrolled in the Traumatic Brain Injury Center of Excellence (TBICoE) 15-Year Longitudinal Caregiver and Family Member Study (Sec721 NDAA FY07). The recruitment procedure involved publicizing the studies to potential participants via 2 main avenues: 1) nationwide community outreach and 2) a military treatment facility TBI service. The majority of participants (83.0%) were recruited via community outreach publicizing efforts, such as 1) a study investigator hosting an exhibit table or announcing the study at relevant events and venues (eg, military, caregiver, family, brain injury meetings); 2) relevant organizations posting on their social media and other electronic platforms (eg, Facebook, Twitter, email blasts, newsletters), and 3) displaying study flyers or business cards on military treatment facility information boards and clinics. A smaller number of participants (17.0%) were recruited from the TBI Service/National Intrepid Center of Excellence at Walter Reed National Military Medical Center by publicizing the study to family members who were with the SMVs receiving treatment at the clinic. Interested caregivers could volunteer to leave their contact details with a study investigator or initiate contact themselves via the study email/phone number displayed on publicizing materials.

Caregivers were included if they provided signed informed consent, were 18 years or older, fluent in English, and had no significant medical conditions. Using a similar approach to Pattinson and colleagues,26 who examined sleep disturbances in SMVs post-TBI, caregivers were selected from a larger sample of 425 and classified into 3 sleep impairment categories based on scores on a Sleep Impairment measure (see Measures below): a) No Sleep Impairment (n = 101), b) Mild Sleep Impairment (n = 71), and c) Moderate-Severe Sleep Impairment (n = 253). To examine the influence of caregiver sleep impairment on HRQOL outcomes, 2 distinct sleep subgroups were retained: (1) Good Sleep (ie, No Sleep Impairment) and (2) Poor Sleep (Moderate-Severe Sleep Impairment). Participants in the Mild Sleep Impairment category were excluded from analyses to ensure that the Good Sleep group included only those participants who reported no sleep problems. The 2 caregiver sleep impairment groups were further divided into 4 groups based on caregiver ratings of SMV adjustment on a functional ability measure (see Measures below): (1) Good Caregiver Sleep and Good SMV Adjustment (Good Sleep/Good Adjustment, n = 43); (2) Good Caregiver Sleep and Poor SMV Adjustment (Good Sleep/Poor Adjustment, n = 39); (3) Poor Caregiver Sleep and Good SMV Adjustment (Poor Sleep/Good Adjustment, n = 55); and (4) Poor Caregiver Sleep and Poor SMV Adjustment (Poor Sleep/Poor Adjustment, n = 146). To create distinct SMV Adjustment groups, caregivers who rated the SMV’s functional ability as Mild Adjustment were excluded from analyses (Good Sleep = 19, Poor Sleep = 52 excluded).

The SMV care recipients also provided signed informed consent to review his/her medical records, except 21 SMVs who declined consent. For SMVs who provided consent, injury, and other medical details were retrieved from their Department of Defense/Veteran Affairs medical records and case conferenced with a doctoral level study psychologist for TBI severity and other medical comorbidities.

The majority of participants were a female (97.2%), intimate partner (91.2%) caregiver of a male SMV (98.9%). Caregivers were on average 40.7 (standard deviation [SD] = 9.2) years old and SMVs 40.0 (SD = 9.2) years old. Caregivers were predominantly white (85.2%, 1.8% Black), had a bachelor’s degree or higher (51.6%), and were not employed (53.4%). On average caregivers reported parenting 2.3 children (SD = 1.1), the majority were living with the SMV (79.2%), and few were caring for additional adults (6.4%). Based on a family of 4 or 5 people, only 4.9% were living below the US 2021 poverty guidelines (ie, $27,750 to $32,470). The majority of SMV care recipients were a Veteran (78.4%) who served in the Army (65.4%; Marine Corp 15.9%, Navy 13.4%, Air Force 4.9%), with only a minority Special Operations Forces (12.4%). SMV TBI severity was as follows: 77.9% uncomplicated mild TBI, 5.0% complicated mild TBI, 3.1% moderate TBI, 6.5% severe TBI, and 7.6% penetrating TBI. The most frequent comorbid conditions cited in the SMV’s medical records were PTSD (76.3%), depressive disorder (50.4%), chronic headaches (63.4%), back pain (66.4%), and other chronic pain (58.8%). Less frequently cited comorbid conditions included hearing (31.7%), substance-related (19.5%), sleep (24.8%), vision (12.6%), gastrointestinal (12.2%), arthritis/degenerative (10.3%), pulmonary (6.1%), cardiovascular (3.8%), obesity (3.8%), and diabetes (2.7%) related disorders. Very few SMVs (3.8%) had sustained other significant bodily injuries (eg, skull fracture, spinal cord injury, burns eye/ear, internal organs, or orthopedic/amputation). Additional caregiver and SMV sociodemographic information for the Caregiver Sleep Impairment and SMV Adjustment groups are presented in Table 1.

Table 1.

Sample characteristics of caregivers and service member/veterans.

Total 1. Good Sleep Good Adjustment 2. Good Sleep Poor Adjustment 3. Poor Sleep Good Adjustment 4. Poor Sleep Poor Adjustment
Caregiver Characteristics
Female, n (%) 275 (97.2) 38 (88.4) 38 (97.4) 55 (100.0) 44 (98.6)
Age in years, M (SD)a 40.7 (9.2) 42.1 (10.7) 43.6 (9.1) 39.4 (9.2) 39.9 (8.7)
Years caregiving, M (SD)b 6.2 (3.6) 5.9 (4.4) 6.3 (3.1) 5.7 (4.2) 6.5 (3.1)
Spouse/partner, n (%) 258 (91.2) 37 (86.0) 31 (79.5) 52 (94.5) 138 (94.5)
Employed, n (%) 132 (46.6) 22 (51.2) 15 (38.5) 34 (61.8) 61 (41.8)
Household income less than 80,000, n (%)a 160 (56.5) 18 (41.9) 24 (61.5) 23 (41.8) 95 (65.1)
Caring for 1 or more children, n (%) 194 (68.6) 24 (55.8) 23 (59.0) 37 (67.3) 110 (75.3)
Caregiving more than 6 h/day, n (%) 152 (53.7) 10 (23.3) 26 (66.7) 9 (16.4) 107 (73.3)
No help with caregiving duties, n (%) 142 (50.2) 30 (69.8) 13 (33.3) 32 (58.2) 67 (45.9)
Less than 1 h/day for self, n (%) 135 (47.7) 12 (27.9) 15 (38.5) 24 (43.6) 84 (57.5)
Service Member Veteran Characteristics
Male, n (%) 280 (98.9) 41 (95.3) 39 (100.0) 55 (100.0) 145 (99.3)
Age in years, M (SD) 40.7 (9.2) 42.1 (10.7) 43.6 (9.1) 39.4 (9.2) 39.5 (7.6)
Years since injury, M (SD)b 6.2 (3.6) 5.9 (4.4) 6.3 (3.1) 5.7 (4.2) 9.3 (4.1)
Currently in the military, n (%) 61 (21.6) 19 (44.2) 5 (12.8) 24 (43.6) 13 (8.9)
Combat exposure, n (%)c 257 (90.8) 36 (83.7) 34 (87.2) 51 (92.7) 136 (93.2)
Traumatic Brain Injury Severityb,d
 Uncomplicated mild, n (%) 204 (77.9) 27 (65.9) 24 (70.6) 40 (74.1) 113 (85.0)
 Complicated/moderate/severe/penetrating, n (%) 58 (22.1) 14 (34.1) 10 (29.4) 14 (25.9) 20 (15.0)
Posttraumatic stress disorder, n (%)d 200 (76.3) 23 (56.1) 24 (70.6) 31 (57.4) 122 (91.7)
Depressive disorder, n (%)d 132 (50.4) 12 (29.3) 23 (67.6) 17 (31.5) 80 (60.2)
Chronic headaches, n (%)d 166 (63.4) 18 (43.9) 22 (64.7) 31 (57.4) 95 (71.4)
Back pain, n (%)d 174 (66.4) 23 (56.1) 19 (55.9) 39 (72.2) 93 (69.9)
Other chronic pain, n (%)d 154 (58.8) 22 (53.7) 20 (58.8) 31 (57.4) 81 (60.9)

n = 283 (Good Sleep/Good Adjustment = 43, Good Sleep/Poor Adjustment = 39, Poor Sleep/Good Adjustment = 55, Poor Sleep/Poor Adjustment = 146). aOne participant missing a response; bIn cases were there were multiple traumatic brain injuries (TBIs), the most severe TBI was reported. If there were multiple TBIs with the same severity, the most recent injury was chosen; cFive participants did not know response; dTotal sample based on service member/veterans who consented to a medical record review (n = 262). M = means, SD = standard deviation.

Study activities and recruitment materials were conducted in accordance with the Institutional Review Board of Walter Reed National Military Medical Center and the guidelines of the Declaration of Helsinki.

Measures and procedures

The self-report questionnaires were completed by caregivers between October 2016 and November 2019 via telephone/web-based procedures from a private location of the caregiver’s choice (eg, home office) during a prescheduled appointment with a study investigator on the telephone to answer any questions. Caregivers were geographically distributed across the United States, with a small number residing internationally.

The Traumatic Brain Injury Caregiver Quality of Life (TBI-CareQOL) Sleep Impairment 8-item short form was used to classify caregivers into the 3 sleep impairment categories described earlier.27 The measure assesses perceptions of waking alertness, tiredness, and functional impairment associated with sleep problems or impaired alertness. Items were rated on a 5-point scale ranging from 1 to 5. A total raw score for each scale was calculated and converted to a T-score with a mean of 50 and standard deviation of 10. T-scores were used to create the sleep impairment categories as follows: No Sleep Impairment (50T or less, mean M = 44.8; SD = 4.7), Mild Sleep Impairment (> 50T to 55T; M = 53.3, SD =1.3), and Moderate-Severe Sleep Impairment (> 55T; M = 63.7, SD = 5.9). Cronbach’s alpha reliability coefficient was .95 (M = 58.7, SD =10.4).

The TBI-CareQOL Measurement System2729 consists of existing HRQOL measures that have been validated for use among caregivers of SMVs and civilians following TBI. It also consists of newly developed TBI-caregiver-specific measures of HRQOL. In the current study, 14 TBI-CareQOL short forms were used reflecting physical (Fatigue), mental health (Anxiety, Depression, Anger, Perceived Stress, Resilience), social (Emotional Support, Social Isolation, Ability to Participate in Social Roles and Activities), and caregiver-specific HRQOL (Anxiety, Strain, Feelings of Loss, Feeling Trapped, Feelings of Loss-Self and Person with TBI). Items were rated on a 5-point scale ranging from 1 to 5. A total raw score for each scale was calculated and converted to a T-score with a mean of 50 and standard deviation of 10. Higher scores reflect worse functioning except for Ability to Participate Social Roles/Activities, Resilience, and Emotional Support that were recoded so that higher scores reflect worse functioning. Cronbach’s alpha reliability coefficients ranged from .89 to .96.

The Patient-Reported Outcomes Measurement Information System (PROMIS) General Life Satisfaction and National Institutes of Health Toolbox Perceived Rejection short form measures were also administered.30 Perceived Rejection items were rated on a 5-point scale ranging from 1 to 5, with higher scores reflecting worse functioning. General Life Satisfaction items were rated on a 7-point scale ranging from 1 to 7 and items were recoded so that higher scores reflect worse functioning. A total raw score for each scale was calculated and standardized on a T-metric with a mean of 50 and standard deviation of 10. Cronbach’s alpha reliability coefficient for General Life Satisfaction was .90 and Perceived Rejection was .96.

The Economic Quality of Life31 is a patient-reported measure of economic and financial quality of life. Items were rated on a 5-point scale ranging from 1 to 5. Items were recoded so that higher scores reflect worse functioning. Cronbach’s alpha reliability coefficient was .92.

The SF-12v2 Health Survey (SF-12v2)32 is a measure of general health. Scores were represented as T-scores with a mean of 50 and standard deviation of 10. The Physical Component Summary score is a measure of physical HRQOL and was calculated for this study. Scores were recoded so that higher scores reflect worse functioning Cronbach’s alpha reliability coefficient was .55.

The Mayo-Portland Adaptability Inventory 4th Edition (MPAI-4)33 is a measure of functional ability for individuals with brain injury. The MPAI-4 has been validated for completion by the individual’s significant other. Caregivers completed the MPAI-4 as a proxy report of the SMV’s functional ability. The MPAI-4 Adjustment Index was calculated for this study. The Adjustment Index reflects emotional, behavioral, and social problems such as mood, anxiety, aggression/anger, pain, interpersonal interactions, and insight. Scores are represented as T-scores with a mean of 50 and standard deviation of 10. Higher scores reflect worse functioning. T-scores were used to create the 3 SMV adjustment categories above as follows: Good SMV Adjustment (50T or less; M = 44.5, SD = 5.9), Mild SMV Adjustment Limitations (> 50T to 55T; M = 53.5, SD = 1.3), and Moderate-Severe SMV Adjustment Limitations (> 55T; M = 63.7, SD = 6.3). Items were rated on a 5-point scale ranging from 0 to 4 as follows: 0 = None; 1 = Mild problem but does not interfere with activities, may use assistive device or medication; 2 = Mild problem, interferes with activities 5–24% of the time; 3 = Moderate problem, interferes with activities 25–75% of the time; and 4 = Severe problem, interferes with activities more than 75% of the time. To examine the unique contribution of individual areas of SMV adjustment (eg, Anxiety, Depression, Irritability/Anger/Aggression) with caregiver sleep impairment, the caregiver’s responses to each individual MPAI-I Adjustment item were further examined. For the purposes of this study, a rating of 4 (ie, Severe problem: interferes with activities more than 75% of the time) on individual items was classified as a severe problem. Cronbach’s alpha reliability coefficient for the MPAI-4 Adjustment Index was .94.

For the purposes of this study, scores on HRQOL measures were also classified as clinically elevated using a T-score cutoff of ≥ 60T. One standard deviation from the mean is an approach considered to represent abnormal scores and significant impairment in previous patient reported outcomes research.24,26,32,34

Statistical analysis plan

First, a series of analyses of variance were conducted for the HRQOL measures by the 4 caregiver sleep/SMV adjustment groups. Second, caregiver’s scores on each scale were classified as clinically elevated using a T-score cutoff of ≥ 60T. The clinically derived cutoff scores were used to further examine the association between clinically elevated scores on the HRQOL measures with caregiver sleep impairment and SMV adjustment. The measures were examined simultaneously by calculating the cumulative percentage of the number of clinically elevated HRQOL scores across all 18 measures. Chi-square analyses were performed to compare the prevalence of the sample with clinically elevated HRQOL scores by caregiver sleep/SMV adjustment group. Third, to determine the unique contribution of SMV adjustment on caregiver sleep impairment, the prevalence of severe caregiver ratings on individual MPAI-4 Adjustment items across the 4 groups was first determined. Chi-square analysis was then used to compare the prevalence of caregivers who reported a severe rating for individual MPAI-4 Adjustment items between the Poor Sleep/Poor Adjustment group and Good Sleep/Poor Adjustment group.

RESULTS

Using analysis of variance, there were significant main effects (all P < .001) across the 4 caregiver sleep/SMV adjustment groups for all HRQOL measures (Table 2 and Figure 1). Pairwise comparisons revealed that caregivers in the Poor Sleep/Poor Adjustment group reported significantly worse scores on all HRQOL measures compared to the Good Sleep/Good Adjustment group (1 vs 4; d = .78–2.83). The largest effect sizes were found for the Fatigue (P < .001, d = 2.83), Caregiver Strain (P < .001, d = 2.47), Feeling Trapped (P < .001, d = 2.36), and Caregiver-Specific Anxiety measures (P < .001, d = 2.34). Caregivers in the Poor Sleep/Poor Adjustment group also reported significantly worse scores on all HRQOL measures compared to the Good Sleep/Poor Adjustment group (2 vs 4; d = .36–2.25) and Poor Sleep/Good Adjustment group (3 vs 4; d = .37–1.83, except Resilience). The largest effect sizes were found for Fatigue (P < .001, d = 2.25) and Caregiver Stain measures (P < .001, d = 1.39) with the Good Sleep/Poor Adjustment group (2 vs 4) and Feeling Trapped (P < .001, d = 1.83) and Caregiver-Specific Anxiety measures (P < .001, d = 1.66) with the Poor Sleep/Good Adjustment group (3 vs 4).

Table 2.

Descriptive statistics for health-related quality of life measures by caregiver sleep/service member and veteran adjustment group.

1. Good Sleep Good Adj 2. Good Sleep Poor Adj 3. Poor Sleep Good Adj 4. Poor Sleep Poor Adj P Pairwise Comparisons
1 vs 2 1 vs 3 1 vs 4 2 vs 3 2 vs 4 3 vs 4
M SD M SD M SD M SD P d P d P d P d P d P d
Physical componenta 45.7 7.2 49.8 8.6 49.6 10.4 53.5 10.8 < .001 .022 .52 .042 .43 < .001 .78 .913 .02 .049 .36 .022 .37
Fatigue 44.8 5.5 48.2 6.3 59.6 8.0 63.5 6.9 < .001 .011 .58 < .001 2.14 < .001 2.83 < .001 1.56 < .001 2.25 .001 .54
Anxiety 47.2 7.1 51.6 7.9 53.3 8.8 61.0 7.8 < .001 .010 .59 < .001 .75 < .001 1.81 .349 .20 < .001 1.20 < .001 .96
Depression 44.6 5.4 47.2 7.5 50.5 8.5 57.3 8.6 < .001 .075 .40 < .001 .82 < .001 1.61 .058 .40 < .001 1.20 < .001 .80
Anger 44.7 7.7 49.1 9.2 51.6 8.4 59.5 9.4 < .001 .021 .52 < .001 .85 < .001 1.64 .174 .29 < .001 1.11 < .001 .87
Perceived stress 44.3 8.6 50.7 7.8 55.5 8.4 61.2 9.1 < .001 .001 .77 < .001 1.32 < .001 1.89 .006 .59 < .001 1.20 < .001 .64
Emotional supporta 47.1 9.1 48.5 10.2 50.7 8.3 56.7 8.8 < .001 .515 .14 .045 .41 < .001 1.08 .255 .24 < .001 .90 < .001 .69
Resiliencea 47.4 7.5 49.6 5.4 54.6 5.1 56.0 6.1 < .001 .149 .33 < .001 1.16 < .001 1.33 < .001 .96 < .001 1.07 .147 .23
Social isolation 43.4 7.4 48.9 8.9 50.7 8.4 59.1 8.2 < .001 .003 .68 < .001 .92 < .001 1.97 .312 .21 < .001 1.23 < .001 1.02
Participate social rolesa 47.3 7.5 54.8 5.4 54.1 7.5 61.3 5.9 < .001 < .001 1.16 < .001 .91 < .001 2.24 .628 .10 < .001 1.12 < .001 1.13
CG-specific anxiety 44.1 6.9 54.2 8.3 48.9 7.6 61.6 7.7 < .001 < .001 1.34 .002 .66 < .001 2.34 .002 .68 < .001 .94 < .001 1.66
CG strain 42.1 6.6 49.5 6.9 48.0 6.6 59.3 7.0 < .001 < .001 1.09 < .001 .90 < .001 2.47 .308 .21 < .001 1.39 < .001 1.62
Feelings of loss-self 43.1 6.8 51.5 6.4 47.8 6.7 58.0 6.9 < .001 < .001 1.26 .001 .70 < .001 2.16 .009 .56 < .001 .95 < .001 1.49
Feelings of loss-PwTBIb 41.0 7.6 49.1 8.4 44.9 7.1 56.0 8.7 < .001 < .001 1.03 .009 .54 < .001 1.79 .011 .55 < .001 .80 < .001 1.35
Feeling trapped 44.2 7.0 55.2 8.0 47.5 7.2 59.6 6.4 < .001 < .001 1.48 .023 .47 < .001 2.36 < .001 1.03 < .001 .65 < .001 1.83
General life satisfactiona 42.2 9.4 49.8 7.0 49.8 8.0 55.8 8.3 < .001 < .001 .91 < .001 .88 < .001 1.57 .991 .00 < .001 .72 < .001 .71
Perceived rejection 44.8 8.8 52.1 9.7 50.6 11.3 63.4 11.1 < .001 .001 .79 .006 .57 < .001 1.76 .521 .14 < .001 1.05 < .001 1.14
Economic QOLa 39.8 8.7 44.9 8.7 43.9 8.1 51.4 9.3 < .001 .011 .58 .019 .48 < .001 1.26 .574 .12 < .001 .71 < .001 .84

n = 283 (Good Sleep/Good Adjustment = 43, Good Sleep/Poor Adjustment = 39, Poor Sleep/Good Adjustment = 55, Poor Sleep/Poor Adjustment = 146). aScores were transposed to indicate that higher scores indicate worse functioning. b15 missing responses. Cohen’s effect size interpretation (d): small (0.2), medium (0.5), large (0.8). Adj = adjustment, CG = caregiver, M = mean, participate social roles = ability to participate in social roles/activities, PwTBI = person with traumatic brain injury, QOL = quality of life, SD = standard deviation.

Figure 1. Mean T-scores for health-related quality of life measures by caregiver sleep/service member and veteran adjustment group.

Figure 1

CG = caregiver, PwTBI = person with traumatic brain injury, QOL = quality of life.

Caregivers in the Good Sleep/Poor Adjustment and Poor Sleep/Good Adjustment groups reported worse scores on the majority of the HRQOL measures compared to caregivers in the Good Sleep/Good Adjustment group (1 vs 2 and 1 vs 3; P < .001–.045, d = .41–2.14) (Table 2 and Figure 1). The largest effect sizes were found for Feeling Trapped (P < .001, d = 1.48) and Caregiver-Specific Anxiety (P < .001, d = 1.34) with the Good Sleep/Poor Adjustment group (1 vs 2) and Fatigue (P < .001, d = 2.14) and Perceived Stress (P < .001, d = 1.32) with the Poor Sleep/Good Adjustment group (1 vs 3).

Fewer significant differences were found between the Good Sleep/Poor Adjustment and Poor Sleep/Good Adjustment groups (2 vs 3) (Table 2 and Figure 1). The Good Sleep/Poor Adjustment group reported worse scores on caregiver-specific HRQOL measures (Caregiver-Specific Anxiety, Feelings of Loss, and Feeling Trapped, P < .001–.011, d = .55–1.03). Whereas the Poor Sleep/Good Adjustment group reported worse scores on general HRQOL measures (Fatigue, Perceived Stress, and Resilience, P < .001–.006, d = .59–1.56; a meaningful effect size was also found for Depression P = .058, d = .40).

When considering the cumulative percentage of the number of clinically elevated HRQOL scores across the 4 groups for all HRQOL measures simultaneously, there was a significantly higher proportion of the sample in the Poor Sleep/Poor Adjustment group that had clinically elevated scores for the majority of the comparisons compared to the 3 other groups (Table 3 and Figure 2). The Good Sleep/Poor Adjustment and Poor Sleep/Good Adjustment groups reported worse scores on 7 comparisons compared to the Good Sleep/Good Adjustment group (1 vs 2 and 1 vs 3). There were no significant differences between the Good Sleep/Poor Adjustment and Poor Sleep/Good Adjustment groups (2 vs 3). For example, 86.3% of the sample in the Poor Sleep/Poor Adjustment group had 3 or more clinically elevated scores compared to 41.8% of the Poor Sleep/Good Adjustment group, 35.9% of the Good Sleep/Poor Adjustment group, and 7.0% of the Good Sleep/Good Adjustment group (1 > 2 and 3 > 4).

Table 3.

Cumulative percent of the number of clinically elevated HRQOL measures by caregiver sleep/service member and veteran adjustment group.

# of Elevated Scoresd 1. Good Sleep Good Adj 2. Good Sleep Poor Adj 3. Poor Sleep Good Adj 4. Poor Sleep Poor Adj P Pairwise Comparisons
1 vs 2 1 vs 3 1 vs 4 2 vs 3 2 vs 4 3 vs 4
% % % % P h P h P h P h P h P h
18 Total 0.0 0.0 0.0 0.0 c c c c c c c
17 or more 0.0 0.0 0.0 1.4 1.000b c c 1.000b .24 c 1.000b .24 1.000b .24
16 or more 0.0 0.0 0.0 2.1 .844b c c 1.000b .28 c 1.000b .28 .563b .28
15 or more 0.0 0.0 0.0 6.2 .056b c c .213b .50 c .208b .50 .118b .50
14 or more 0.0 0.0 0.0 13.7 < .001b c c .009b .75 c .009b .75 .004 .75
13 or more 0.0 2.6 0.0 19.2 < .001b .476b .32 c .002 .90 .415b .32 .011 .59 < .001 .90
12 or more 0.0 2.6 0.0 26.7 < .001 .476b .32 c < .001 1.08 .415b .32 .001 .77 < .001 1.08
11 or more 0.0 2.6 0.0 36.3 < .001 .476b .32 c < .001 1.30 .415b .32 < .001 .98 < .001 1.30
10 or more 0.0 2.6 1.8 39.7 < .001 .476b .32 1.000b .28 < .001 1.36 1.000b .03 < .001 1.04 < .001 1.08
9 or more 0.0 2.6 1.8 43.2 < .001 .476b .32 1.000b .28 < .001 1.43 1.000b .03 < .001 1.11 < .001 1.15
8 or more 0.0 2.6 7.3 47.3 < .001 .476b .32 .129b .56 < .001 1.52 .399b .24 < .001 1.21 < .001 .97
7 or more 0.0 12.8 10.9 57.5 < .001 .021b .74 .033b .68 < .001 1.72 1.000b .06 < .001 .98 < .001 1.05
6 or more 0.0 15.4 12.7 63.0 < .001 .009b .81 .017b .56 < .001 1.83 .713 .09 < .001 1.03 < .001 1.11
5 or more 0.0 17.9 25.5 72.6 < .001 .004b .88 < .001 .68 < .001 2.04 .389 .18 < .001 1.16 < .001 .98
4 or more 0.0 28.2 34.5 81.5 < .001 < .001 1.12 < .001 .72 < .001 2.25 .516 .14 < .001 1.14 < .001 1.00
3 or more 7.0 35.9 41.8 86.3 < .001 .001 .75 < .001 1.06 < .001 1.85 .563 .12 < .001 1.10 < .001 .98
2 or more 16.3 46.2 52.7 91.1 < .001 .003 .65 < .001 1.26 < .001 1.70 .530 .13 < .001 1.04 < .001 .91
1 or more 32.6 59.0 74.5 95.9 < .001 .016 .54 < .001 .87 < .001 1.53 .111 .33 < .001b .99 < .001 .66

n = 283 (Good Sleep/Good Adjustment = 43, Good Sleep/Poor Adjustment = 39, Poor Sleep/Good Adjustment = 55, Poor Sleep/Poor Adjustment = 146). aMaximum of 18 scores. bFisher’s exact test used due to small count in ≤ 4 cells. cChi-square not run as variable is a constant. Adj = adjustment.

Figure 2. Cumulative percent of the number of clinically elevated health-related quality of life measures by caregiver sleep/service member and veteran adjustment group.

Figure 2

Using chi-square analysis, the Poor Sleep/Poor Adjustment group reported a significantly higher prevalence of severe ratings for the Irritability, Anger, and Aggression MPAI-4 item compared to the Good Sleep/Poor Adjustment group (P = .023, h = .43) (Table 4 and Figure 3). All other comparisons were not significant (P = .082–.900, h = .02–.33). A meaningful effect size was found for the MPAI-4 Adjustment item Family/Significant Relationships (P = .082, h =.33), but did not reach significance, possibly due to the small sample size of the Good Sleep/Poor Adjustment group.

Table 4.

Descriptive statistics for MPAI-4 Adjustment items with caregiver severe response category by caregiver sleep/service member and veteran adjustment group.

MPAI-4 Items 2. Good Sleep Poor Adjustment 4. Poor Sleep Poor Adjustment Chi-Square
n % n % P h 2 vs 4 Effect Size
Anxiety 19 48.7 83 56.8 .364 .17 Small
Depression 16 41.0 67 45.9 .587 .10 Very small
Irritability, anger, and aggression 11 28.2 71 48.6 .023 .43 2 < 4 Small-medium
Pain and headache 21 53.8 84 57.5 .680 .07 Very small
Fatigue 20 51.3 87 59.6 .351 .16 Small
Sensitivity to mild symptoms 10 25.6 39 26.7 .893 .02 Very small
Inappropriate social interaction 10 25.6 45 30.8 .529 .12 Very small
Impaired self-awareness 9 23.1 47 32.2 .271 .20 Small
Family/significant relationships 7 17.9 47 32.2 .082 .33 Small-medium
Initiation 12 30.8 59 40.4 .271 .20 Small
Social contact 17 43.6 62 42.5 .900 .02 Very small
Leisure and recreational activitiesa 11 31.4 49 37.1 .533 .12 Very small

Good Sleep/Poor Adjustment = 39, Poor Sleep/Poor Adjustment = 146. aSevere Adjustment Problem = corresponds to a rating of 4 on 5-point rating scale “interferes with activities more than 75% of the time.” a18 missing responses. MPAI-4 = Mayo-Portland Adaptability Inventory 4th Edition.

Figure 3. Descriptive statistics for MPAI-4 Adjustment items with caregiver severe response category by caregiver sleep/service member and veteran adjustment group.

Figure 3

MPAI-4 = Mayo-Portland Adaptability Inventory 4th Edition.

DISCUSSION

Consistent with previous research,24 the prevalence of sleep impairment in this sample was high, with over three-quarters of caregivers reporting any sleep impairment and over half reporting moderate to severe sleep impairment. This is concerning since poor sleep is associated with an increased risk of acute and chronic health problems.25 Sleep impairment in caregivers of SMVs post-TBI was previously associated with worse composite domain scores of physical, mental health, social, and caregiver-specific HRQOL. Worse SMV functional ability moderated the relationship between sleep impairment and social HRQOL, which was presumed to be related to the SMV’s comorbid mental health problems.10 In the current study, the relationship between HRQOL and sleep impairment and SMV functional ability specific to adjustment was more closely examined in caregivers of SMVs post-TBI. While the presence of either caregiver sleep impairment or poor SMV adjustment singularly was associated with worse scores on individual measures of physical, mental health, social, economic, and caregiver-specific HRQOL, the presence of both sleep impairment and poor SMV adjustment was associated with further impairment in HRQOL scores (ie, Poor Sleep/Poor Adjustment > Poor Sleep/Good Adjustment and Good Sleep/Poor Adjustment > Good Sleep/Good Adjustment).

Not surprising, the largest effect sizes for caregivers reporting poor sleep were found for fatigue. Feeling tired or fatigued is a symptom of daytime impairment due to poor sleep.35 Fatigue related to sleep impairment in caregivers of SMVs has been reported elsewhere.10 Among caregivers reporting poor SMV adjustment, large effect sizes were found for HRQOL measures related to care provision, such as Caregiver Strain and Caregiver-Specific Anxiety. This relationship was particularly evident between the Good Sleep/Poor Adjustment and Poor Sleep/Good Adjustment groups. While there were fewer significant differences found on HRQOL measures between the Good Sleep/Poor Adjustment and Poor Sleep/Good Adjustment groups, an interesting trend in the pattern of differences emerged that was likely a reflection of the composition of the groups; poor caregiver sleep vs poor SMV adjustment. Caregivers in the Good Sleep/Poor Adjustment group reported better sleep and worse SMV adjustment and tended to report worse scores on caregiver-specific HRQOL measures with item content that focused on HRQOL in relation to care provision. For example, Caregiver-Specific Anxiety (eg, I cannot enjoy myself because I am worried about the person I care for), Feelings of Loss-Self (eg, I feel sad because becoming a caregiver has changed what I expect for my future) and Person with TBI (ie, I grieve about the loss of the future of the person I care for), and Feeling Trapped (eg, I feel like I cannot leave home because of the responsibilities I have as a caregiver). Caregivers in the Poor Sleep/Good Adjustment group reported worse caregiver sleep and better SMV adjustment and tended to report worse scores on general HRQOL measures with item content that focuses on HRQOL more universally, for example, Fatigue (ie, How often did you have trouble finishing things because of your fatigue?), Perceived Stress (eg, How often have you found that you could not cope with all the things that you had to do?), Resilience (eg, I felt the things I went through made me a stronger person), and a meaningful, although nonsignificant, effect size for Depression (ie, I felt that nothing could cheer me up).

SMV verbal or physical irritability, anger, and aggression was the only MPAI-4 Adjustment item with a severe rating that significantly differed across the poor adjustment caregiver groups (ie, Poor Sleep/Poor Adjustment > Good Sleep/Poor Adjustment). SMV anger has been associated with sleep impairment in caregivers of SMVs post-TBI in previous research24 and could be considered a risk factor for caregiver sleep impairment. Nearly 1 in 2 caregivers in the Poor Sleep/Poor Adjustment group and over a quarter of caregivers in the Good Sleep/Poor Adjustment group reported that the SMV had a severe problem with irritability, anger, or aggression. Verbal and physical aggression has previously been reported among SMVs referred for behavioral health treatment, with 60% engaging in some form of domestic abuse such as conflicts involving “shouting, pushing, or shoving” (53.7%), their partners feeling afraid of them (27.6%), and hurting each other (4.4%). Depression and PTSD were associated with higher rates of family dysfunction.36 In the current study, depression and PTSD were prevalent among SMVs, particularly the poor adjustment groups. Arousal and reactivity is a PTSD symptom cluster and can manifest as verbal and physical irritability, anger, and aggression. SMVs with PTSD tend to report higher rates of intimate partner aggression, and PTSD is considered a strong risk factor for relationship aggression.3739 Of further concern, the majority of caregivers in the poor adjustment groups reported parenting children. SMV irritability and anger has been related to negative parent-child relationships and increased parenting stress, increased physical discipline and abuse, and other child maltreatment. Children can develop emotional, social, behavioral, academic, and developmental problems that may persist into adulthood.40,41 They are also more likely to perpetrate or experience relationship aggression in adulthood.42,43 For children living in a 2-person household, it is possible that having 1 well-functioning and stable parent may help to moderate the negative association of SMV’s psychological distress with child HRQOL. But if both parents are distressed, the negative association can be more problematic.44 SMV aggression and the impact on the health and well-being of military families requires further investigation and long-term monitoring. SMVs with aggression and anger could benefit from anger management intervention and prevention strategies, with elimination of aggressive behavior a primary treatment goal.

There are several potential limitations to consider. First, research has shown that self-reports of sleep problems do not always correspond with objective measures of sleep problems.45 As such, further investigation using objective measures of sleep, such as actigraphy or polysomnography, are needed to further understand sleep problems in this population. Second, in previous research, women caregivers who were veterans themselves were found to report worse sleep, mental health, daytime impairment due to poor sleep (eg, fatigue, aggression) compared to women caregivers who were not veterans46 or women who were not caregivers.35 The current study did not examine military history among the caregivers themselves. It would be interesting for future research to consider the relationship between military history and HRQOL among caregivers. Third, it is acknowledged that caregiver report of SMV adjustment may have been biased by their own psychological distress. Bidirectional and reciprocal associations among individual and couple level factors may influence caregiver and SMV outcomes. Future research should consider collecting dyadic data with both the SMV and caregiver self-report. Fourth, it is acknowledged that other caregiver and SMV medical conditions and medications not represented in this study may also be associated with caregiver HRQOL and sleep outcomes. SMVs themselves commonly report sleep impairment and the prevalence increases if SMVs have a diagnosis of PTSD and/or TBI.26,47 The SMV’s own sleep-related impairment and other medical comorbidities, such as obesity, periodic limb movement disorder, restless leg, syndrome, obstructive sleep apnea, may also be a factor associated with poor caregiver sleep, especially for intimate couples who sleep in close proximity. Few clinical trials have explored sleep problems among caregiver and care recipient dyads. Further research should consider the bidirectional association in sleep impairment between caregiver and SMV dyads. Finally, it is acknowledged that the recruitment procedures may have resulted in selection bias and underrepresentation or overrepresentation of caregivers of SMVs experiencing HRQOL concerns. The sample may not represent the broader military caregiver population.

Before concluding, it is worth highlighting that while civilian and military caregivers of individuals post-TBI have many overlapping HRQOL concerns,48,49 they also have unique concerns, including those relating to sleep.10,24 In previous research, a relationship between sleep impairment, social HRQOL, and care recipient functional ability was found for military caregivers but not civilian caregivers of individuals post-TBI.10 The SMV’s self-reported anger predicted sleep impairment for military caregivers. Whereas for civilian care recipients, the SMV’s self-reported cognitive symptoms predicted civilian caregiver sleep impairment.24 The methodology and current findings may not be directly applicable civilian caregivers of individual following a TBI.

Problematic sleep can be treated, and based on the findings from the current study, caregivers could benefit from sleep intervention. A recent systematic review of interventions aimed at improving the sleep-rest pattern of caregivers of adults caring for various illnesses and conditions concluded that sleep interventions may have beneficial effects on their sleep. These include cognitive-behavioral sleep interventions, caregiver health interventions, and exercise programs, as well as other types of interventions such as acupressure, back massage, reflexology, music, and heartrate variability biofeedback sessions.50 Research is required to determine the efficacy of these interventions for sleep impairment in military caregivers. Additionally, early identification and treatment of SMVs with neurobehavioral problems post-TBI may improve the SMV’s recovery and lessen sleep problems, distress, and burden among their caregivers.

ACKNOWLEDGMENTS

The authors express gratitude to the caregivers for their time and commitment each year to participating in the study and the community organizations who offer their time and services to publicize the studies to the caregiver and military community. The authors acknowledge the efforts of the larger team of research coordinators, research associates, research assistants, program managers, and senior management.

ABBREVIATIONS

ANOVA

analysis of variance

M

means

MPAI-4

Mayo-Portland Adaptability Inventory 4th Edition

PTSD

post-traumatic stress disorder

SD

standard deviation

SMV

service member veteran

TBI

traumatic brain injury

TBI-CareQOL

The Traumatic Brain Injury Caregiver Quality of Life

DISCLOSURE STATEMENT

All authors have seen and approved this manuscript. This study was funded by the Traumatic Brain Injury Center of Excellence (TBICoE). The views expressed in this manuscript are those of the authors and do not necessarily represent the official policy or position of the Defense Health Agency, Department of Defense, or any other US government agency. This work was prepared under Contract HT0014-21-C-0012 with DHA Contracting Office (CO-NCR) HT0014 and, therefore, is defined as US Government work under Title 17 U.S.C.§101. Per Title 17 U.S.C.§105, copyright protection is not available for any work of the US government. For more information, please contact dha.TBICOEinfo@mail.mil. The authors report no conflicts of interest.

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