Abstract
Objectives
To (1) assess long-term health care service utilization and satisfaction with health care services among women with traumatic brain injury (W-TBI); (2) examine barriers that prevent W-TBI from receiving care when needed; and (3) understand the perceived supports available for W-TBI.
Design
Retrospective cohort study.
Setting
Community.
Participants
W-TBI (n=105) 5 to 12 years postinjury and women without TBI (n=105) matched on age, education, and geographic location.
Interventions
Not applicable.
Main Outcome Measures
Pre- and postinjury data were collected using a questionnaire administered via a semistructured interview. Questions on health services utilization, satisfaction with and quality of services, barriers to receiving care, and perceived social support were from the Canadian Community Health Survey; additional questions on perceived social support were from another large-scale study of people with moderate to severe brain injury.
Results
Compared with women without TBI, W-TBI reported using more family physician and community health services. W-TBI reported that they did not receive care when needed (40%), particularly for emotional/mental health problems. Significantly more W-TBI reported financial and structural barriers. There were no significant differences in reported satisfaction with services between women with and without TBI.
Conclusions
Health service providers and policymakers should recognize the long-term health and social needs of W-TBI and address societal factors that result in financial and structural barriers, to ensure access to needed services.
Keywords
List of abbreviations:
CCHS (Canadian Community Health Survey), GCS (Glasgow Coma Scale), OR (odds ratio), TBI (traumatic brain injury), W-TBI (women with traumatic brain injury)Globally, traumatic brain injury (TBI) is a leading cause of disability for those younger than 45 years,
1
, 2
and approximately one third of TBIs are sustained by girls and women.3
, 4
Researchers have reported that women with TBI (W-TBI) are more likely to have fewer children, and experience more amenorrhea and postpartum difficulties compared with age-matched women without TBI4
, 5
, 6
; W-TBI also report more emotional, cognitive, and somatic difficulties than men with TBI.6
, 7
, 8
, 9
, 10
, 11
Furthermore, W-TBI experience considerable risk of abuse, and loss of emotional and financial support.12
Despite these findings, women's health outcomes remain understudied.13
, 14
Therefore, research on women's lived experiences of TBI needs to be performed, not only to address this knowledge gap but also to explore how and why women living with TBI experience health and health care services differently than men living with TBI, or differently than women with no health conditions and with non–TBI-related impairments or disabilities. As researchers point out, even if health concerns are similar, biological processes (eg, reproductive system, life expectancy) and social contexts (eg, socioeconomic inequality, vulnerability to violence, culture) can lead to dramatically different outcomes.15
, 16
, 17
Advances in medical technology and care have improved the survival rate after TBI, thus increasing the demand for and use of community-based medical services.
18
, 19
, 20
In Canada, hospital and physician services are publicly insured, which theoretically allows for accessible and ongoing care; however, long-term community care and rehabilitation services are offered on an inconsistent basis and are largely dependent on an individual's insurance or other personal resources to pay privately for services.21
, 22
The presence of multiple barriers to accessing health services for people with chronic disability or illness has long been recognized,23
, 24
particularly for women.25
, 26
, 27
Although several barriers to accessing care have also been identified by patients with TBI, their families, and health care providers,21
, 28
, 29
, 30
, 31
, 32
, 33
little is known about the utilization of and access to health services specifically by W-TBI over the long-term.34
Moreover, satisfaction with access to health services is consistently reported as problematic by patients with chronic illness.22
, 35
, 36
The acknowledgment that TBI should be considered a chronic illness requiring long-term attention37
, 38
places TBI within this broader health services context and provides an opening for extending this query to women living with TBI.The objectives of this study were to (1) assess health care service utilization, perceived quality of care, and perceived satisfaction of care among W-TBI compared with women without TBI; (2) understand the health care access barriers that prevent W-TBI from receiving care when needed; and (3) examine the perceived social supports available for W-TBI.
Methods
This is a retrospective cohort study involving 8 acute care and rehabilitation facilities across Ontario. A major focus of this study was to compare the reproductive health of W-TBI with that of women without TBI, and results have been reported elsewhere.
4
The current article focuses on additional data gathered during the original study about (1) health care service utilization, (2) perceived quality of and satisfaction with care, (3) barriers to accessing care, and (4) social support availability.Study population
Health records of female patients admitted to participating facilities from January 1996 through December 2002 were reviewed by authorized medical records staff for eligibility, and letters were sent by the medical records staff to these potential participants with study information, consent forms, and information regarding participation. Cases were defined as records indicating a diagnosis of moderate to severe TBI, classified using a Glasgow Coma Scale (GCS) score of <13; if GCS scores were unavailable, loss of consciousness for >30 minutes, abnormal findings on computed tomography scans, or posttraumatic amnesia of >1 day was used to indicate moderate to severe TBI at the scene of injury or at the hospital.
4
, 39
, 40
Study participants were 18 to 40 years of age at the time of injury, currently living in the community, and able to communicate in English and provide signed consent. Of 367 women who were potentially eligible, 238 (64.9%) could be contacted, and of those, 105 (44.1%) consented to take part in the study. The study's authors were unable to determine how nonparticipants differed demographically from those who participated because ethics guidelines limited the review of medical records by the study team without the participants' consent.41
Control participants were recruited by a third party through random digit dialing and were matched with cases by age (±5y), geographic location (using first 2 digits of postal code), and education (±1 level). Research ethics boards of all participating centers approved this study.Data collection
We used measures from a larger questionnaire that was developed to explore the impact of TBI on women‘s health.
4
Overall, the questionnaire collected demographic and pre- and postinjury personal information (eg, age, education, marital status, employment status), injury-related details, information on women's general and reproductive health, and satisfaction with and use of services. The measures used for the current study on utilization of and satisfaction with health care services were largely adapted from the Canadian Community Health Survey (CCHS).42
The CCHS is a cross-sectional national survey that collects data on health status and health care utilization and is used for surveillance purposes. The CCHS is regularly reviewed by expert health authorities for quality and relevance and is rigorously tested for validation. It is comparable to the National Health Interview Survey in the United States.Statistics Canada. Canadian Community Health Survey (CCHS). Questionnaire for Cycle 2.1, January 2003 to November 2003. Revised July 2005. [Date modified 2007-10-24.] Available at: http://www23.statcan.gc.ca/imdb-bmdi/pub/instrument/3226_Q1_V2-eng.pdf. Accessed February 2, 2015.
43
Additional measures of social support were drawn from large studies of people with moderate to severe brain injury.Statistics Canada. Joint Canada/United States Survey of Health: findings and public-used microdata file. Cat. #82M0022XIE. Ottawa: Statistics Canada, 2004. Available at: http://www.statcan.gc.ca/pub/82m0022x/82m0022x2003001-eng.htm. Accessed February 2, 2015.
44
In the present study, we focused on responses related to health services: utilization, barriers, and satisfaction. We questioned the availability of social and emotional support and support with daily living activities (eg, can you count on anyone to give you emotional support/extra help with daily tasks?) and asked about sources of support (professional, family/friends) and frequency of use before and after brain injury (very frequently, frequently, or infrequently). Perceived satisfaction with interaction with a family doctor was rated on a 5-point scale of satisfaction from very satisfied to very dissatisfied. The ratings available for perceived quality of care were excellent, good, fair, or poor. For women who had experienced a pregnancy, we asked about the quality of and satisfaction with care by the physician providing obstetric/gynecologic care. Respondents were also asked about utilization of other community-based health care received outside a hospital or doctor's office, such as home nursing care, home-based counseling or therapy, personal care, or community walk-in clinics. Respondents were asked to rate their satisfaction with the interactions with community-based health care providers and the perceived quality of care. Details of respondents' failure to receive needed services, and the type of services needed, were requested, and respondents were asked to identify any barriers to care, such as availability, wait time, cost, transportation, language barriers, and time constraints.We used the Health Care Access Barriers model by Carrillo et al
45
to organize the data collected. This model provides relevant domains for classifying barriers to health care access by categorizing barriers into 3 domains: structural (organizational/institutional barriers), financial (health insurance/cost-related barriers), and cognitive (communication/knowledge barriers). Identified barriers were categorized and given a score of 1, and the scores were summed under each domain. The questionnaire was administered to all participants via face-to-face or telephone interviews by trained research staff. W-TBI were questioned about their health before and after injury, while demographic and injury-related information was extracted from the questionnaire and health records. Most of the women in the control group were interviewed face to face (n=14 via telephone) and were asked about their health during the same period as their matched case.Data analysis
Statistical Analysis System version 9.2a was used to conduct data analysis. Descriptive statistics were produced for both W-TBI and their 1:1 matched women without TBI. Analysis was conducted using conditional logistic regression with controls as the reference group, based on discordant pairs from a 2×2 table. Conditional logistic regression is used when data are matched or stratified such as in a case-control study or a retrospective study. The purpose of this type of regression is to determine the probability of an outcome of interest while controlling for certain variables. A series of univariate logistic regression analyses were used to determine the strength of association between W-TBI and key health service outcome variables expressed in an odds ratio (OR). To account for the multiple comparisons and the associated inflated familywise error rate, the Holm-Bonferroni correction was used. The P values were based on the Wald test, which can be used for binary and multilevel variables. It is asymptotically equivalent to the likelihood ratio test and only requires estimating a single model. For ordinal categorical variables, the OR is for a 1-level change of the ordinal score, following the assumption of a linear relationship between levels of an independent variable (eg, total household income). The confidence intervals for the OR were attained from the maximum likelihood estimates of the conditional logistic regression. For small cell sizes (n<10), the Fisher exact test is more accurate than the Pearson chi-square test. Therefore, the Fisher exact test was preferred for analyzing variables associated with barriers to receiving care, to test the strength of association for most of the variables. Statistical significance was determined at P<.05 for both the Wald and Fisher exact tests.
Results
Sociodemographic and injury characteristics
W-TBI (n=105) and women without TBI (n=105) were matched on age, geographic location, and education (table 1). The mean time since injury was 7.7 years with a range of 4.7 to 12.2 years. The mean age ± SD at the time of injury was 27.5±7.5 years. Motor vehicle collisions accounted for 77.9% of injuries, and the average ± SD length of stay in the hospital was 32.1±34.9 days. The mean ± SD GCS score of W-TBI was 7.2±3.4, and 46% of W-TBI had posttraumatic amnesia lasting >24 hours.
Table 1Sociodemographic characteristics of W-TBI (post-TBI) and matched controls
| Variable | W-TBI (n=105) | Controls (n=105) | OR | CI | P | ||
|---|---|---|---|---|---|---|---|
| n | % | n | % | ||||
| Country of birth | |||||||
| Canada | 88 | 83.8 | 94 | 89.5 | 0.57 | 0.24–1.36 | .2167 |
| Foreign | 17 | 16.2 | 11 | 10.5 | |||
| Ethnicity | |||||||
| European descent | 86 | 81.9 | 88 | 83.8 | 0.88 | 0.43–1.79 | .7152 |
| Aboriginal descent (partial/full) | 8 | 7.6 | 6 | 5.7 | |||
| Asian/mixed/other | 11 | 10.5 | 11 | 10.5 | |||
| Partner status | |||||||
| Single/separated/divorced/widowed | 56 | 53.3 | 21 | 20.0 | 4.18 | 2.17–8.07 | <.0001 |
| Married/partnered | 49 | 46.7 | 84 | 80.0 | |||
| Living situation | |||||||
| Alone | 20 | 19.1 | 7 | 6.7 | 3.60 | 1.343–9.70 | .0113 |
| With family/friends | 85 | 81.0 | 98 | 93.3 | |||
| Level of education | |||||||
| Postsecondary | 74 | 70.5 | 81 | 77.1 | 0.63 | 0.32–1.27 | .19 |
| Secondary | 23 | 21.9 | 17 | 16.2 | |||
| Primary/some secondary | 8 | 7.6 | 7 | 6.7 | |||
| Employment status | |||||||
| Employed | 62 | 59.0 | 90 | 85.7 | 0.28 | 0.14–0.55 | .0002 |
| Total household income ($) | |||||||
| <20,000 | 17 | 16.4 | 0.70 | 0.59–0.84 | <.0001 | ||
| 20,000–29,999 | 6 | 5.8 | 10 | 10.0 | |||
| 30,000–39,999 | 15 | 14.4 | |||||
| 40,000–49,999 | 8 | 7.7 | 7 | 7.0 | |||
| 50,000–59,999 | 10 | 9.6 | 11 | 11.0 | |||
| 60,000–69,999 | 9 | 8.7 | 8 | 8.0 | |||
| ≥70,000 | 32 | 30.8 | 60 | 60.0 | |||
| Mean | SD | Mean | SD | ||||
| Age at TBI (y) | 27.5 | 7.5 | |||||
| Age at interview (y) | 35.2 | 7.5 | 35.3 | 8.0 | 0.98 | 0.87–1.10 | .6997 |
NOTE. Some variables have missing data.
Abbreviation: CI, confidence interval.
∗ Reported as odds of European descent versus non-European descent.
† Value <5 not reported.
W-TBI had greater odds of not being married/partnered postinjury than women without TBI (OR=4.18, P<.0001). W-TBI were more likely to be living alone post-TBI than women without TBI (OR=3.60, P=.01). An analysis of change in living status showed that W-TBI have greater odds of changing from living with family/friends to living alone compared with controls (OR=5.00, P=.01) over a comparable follow-up period. W-TBI were less likely to be employed (P=.0002) and to have a high income (P<.0001) than controls. W-TBI had greater odds of becoming unemployed than those in the control group over a comparable period (OR=4.28, P=.0001).
Family physician and community-based health services
Table 2 shows that there was no significant difference in utilization of family physician services between W-TBI post-TBI and controls. However, we found that the odds of visiting a family physician “very frequently/frequently” were 2.08 times higher (P=.001) for W-TBI than for women without TBI. Postinjury, the odds of using community-based health care services were 4.86 times higher (P=.0001) for W-TBI than for women without TBI. Perceived quality of care and satisfaction with care were not significantly different between groups for both family physician services and community-based health care services that were assessed.
Table 2Comparison of W-TBI and controls on health service utilization
| Health Service Variable | W-TBI (n=105) | Controls (n=105) | OR | CI | P | ||
|---|---|---|---|---|---|---|---|
| n | % | n | % | ||||
| Family physician | |||||||
| Utilization | |||||||
| Pre-TBI | 103 | 98.1 | 98 | 93.3 | NA | NA | .0253 |
| Post-TBI | 103 | 98.1 | 103 | 98.1 | 1.00 | 0.14–7.100 | 1.0000 |
| Frequency of visits pre-TBI | |||||||
| Very frequently | 29 | 28.7 | 31 | 32.0 | 0.87 | 0.59–1.29 | .4870 |
| Frequently | 42 | 41.8 | 43 | 44.3 | |||
| Infrequently | 30 | 29.7 | 23 | 23.7 | |||
| Frequency of visits post-TBI | |||||||
| Very frequently | 74 | 72.6 | 47 | 45.6 | 2.077 | 1.33–3.245 | .0014 |
| Frequently | 18 | 17.7 | 37 | 35.9 | |||
| Infrequently | 10 | 9.8 | 19 | 18.5 | |||
| Quality of care pre-TBI | |||||||
| Excellent | 57 | 55.3 | 49 | 50.0 | 0.81 | 0.54–1.22 | .3048 |
| Good | 34 | 33.0 | 35 | 35.7 | |||
| Fair/poor | 12 | 11.7 | 14 | 14.3 | |||
| Quality of care post-TBI | |||||||
| Excellent | 66 | 64.7 | 54 | 52.4 | 0.72 | 0.48–1.08 | .1140 |
| Good | 24 | 23.5 | 36 | 35.0 | |||
| Fair/poor | 12 | 11.8 | 13 | 12.6 | |||
| Satisfaction with interpersonal care pre-TBI | |||||||
| Very satisfied | 63 | 61.2 | 56 | 57.1 | 0.87 | 0.61–1.23 | .4268 |
| Somewhat satisfied | 25 | 24.3 | 29 | 29.6 | |||
| Neither satisfied/dissatisfied | 11 | 10.7 | 6 | 6.1 | |||
| Somewhat dissatisfied/dissatisfied | 7 | 7.1 | |||||
| Satisfaction with interpersonal care post-TBI | |||||||
| Very satisfied | 68 | 66.7 | 62 | 60.2 | 0.82 | 0.56–1.19 | .3047 |
| Somewhat satisfied | 19 | 18.6 | 29 | 28.2 | |||
| Neither satisfied/dissatisfied | 13 | 12.8 | 5 | 4.9 | |||
| Somewhat dissatisfied/dissatisfied | 7 | 6.8 | |||||
| Community-based health care providers | |||||||
| Utilization post-TBI | 95 | 90.5 | 68 | 64.8 | 4.86 | 2.15–10.96 | .0001 |
| Quality of care post-TBI | |||||||
| Excellent | 46 | 48.4 | 21 | 30.9 | 1.49 | 0.84–2.62 | .1712 |
| Good | 38 | 40.0 | 41 | 60.3 | |||
| Fair/poor | 11 | 11.6 | 6 | 8.9 | |||
| Satisfaction of interpersonal care post-TBI | |||||||
| Very satisfied | 57 | 60.0 | 28 | 41.2 | 0.89 | 0.58–1.36 | .5929 |
| Somewhat satisfied | 35 | 26.3 | 33 | 48.5 | |||
| Neither satisfied/dissatisfied | 6 | 8.8 | |||||
| Somewhat dissatisfied/dissatisfied | 10 | 10.5 | |||||
NOTE. Frequency: “very frequently” indicates more than once per year; “frequently,” at least once per year; “infrequently,” less than once per year.
Abbreviations: CI, confidence interval; NA, not applicable.
∗ P value is significant according to Holm-Bonferroni correction.
† Value <5 not reported.
Maternity/conception health services
Before injury, 22.9% of W-TBI used obstetrician/gynecologist services, whereas 15.2% used these services post-TBI. Pre-TBI, 11.4% of W-TBI used family physician/midwife services for their last pregnancy, and 5.7% used these services post-TBI. Perceived quality of care of and satisfaction with interpersonal care for these services were high among W-TBI, pre- and post-TBI. No significant differences were found between W-TBI (pre- and post-TBI) and controls in the utilization, perceived quality of, and satisfaction with both obstetrician/gynecologist and family physician/midwife services.
Barriers to receiving care when needed
Table 3 shows that 40% of W-TBI reported not receiving care when needed postinjury, which was significantly more than women without TBI (OR=3.70, P=.0002). Structural barriers (P=.001) and financial barriers (P=.003) were reported by significantly more W-TBI than controls. Of the 42 W-TBI who reported not receiving needed care, 54.8% indicated structural barriers, 40.5% indicated financial barriers, and 52.4% indicated cognitive barriers to receiving care when needed; significantly more W-TBI, compared with women in the control group, sought timely treatment of emotional/mental health problems (P<.01) and support services (P=.02).
Table 3Comparison of W-TBI and controls on barriers to receiving care
| Health Service Variable | W-TBI (n=105) | Controls (n=105) | OR | CI | P | ||
|---|---|---|---|---|---|---|---|
| n | % | n | % | ||||
| Care needed post-TBI and | |||||||
| Not Received | 42 | 40.0 | 15 | 14.3 | 3.70 | 1.84–7.44 | .0002 |
| Received | 63 | 60.0 | 90 | 85.7 | |||
| (n=42) | (n=15) | ||||||
| Types of barriers experienced | |||||||
| Structural | 23 | 54.8 | 15 | 100 | .0014 | ||
| Financial | 17 | 40.5 | .0025 | ||||
| Cognitive | 22 | 52.4 | 7 | 46.7 | .7696 | ||
| No. of barriers experienced | |||||||
| ≥3 | 16 | 38.1 | 6 | 40.0 | 1.0000 | ||
| 2 | 9 | 21.4 | 1.0000 | ||||
| 1 | 17 | 40.5 | 6 | 40.0 | 1.0000 | ||
| Type of care needed | |||||||
| Treatment of physical problem | 26 | 61.9 | 10 | 66.7 | .8965 | ||
| Treatment of emotional/mental health problem | 22 | 52.4 | .0135 | ||||
| Support services | 12 | 28.6 | .0245 | ||||
| Care of injury | 5 | 11.9 | .2230 | ||||
| Regular checkup | .5990 | ||||||
Abbreviation: CI, confidence interval.
∗ Barriers categorized using the Health Care Access Barriers model (Carrillo et al,
45
2011).† Pearson chi-square test.
‡ Value <5 not reported.
§ Fisher exact test P value (for small cell sizes, n<10).
Perceived access to social support
W-TBI reported less access to emotional support (OR=.11, P=.04) and financial support (OR=.07, P=.02) compared with women without TBI (table 4). No significant differences were noted in the sources of financial support and help with daily tasks; however, W-TBI reported more emotional and informational support from professionals and less from family and friends than women without TBI.
Table 4Comparison of women with and without TBI on perceived access to social supports
| Social Support Variables | W-TBI (n=105) | Controls (n=105) | OR | CI | P | ||
|---|---|---|---|---|---|---|---|
| n | % | n | % | ||||
| Emotional support | |||||||
| Available | 95 | 90.5 | 103 | 98.1 | 0.11 | .01–.88 | .0371 |
| Support from | .0102 | ||||||
| Professional | 5 | 5.3 | |||||
| Family/friends | 50 | 52.6 | 69 | 67.7 | |||
| Both | 40 | 42.1 | 33 | 32.4 | |||
| Help with daily tasks | |||||||
| Available | 100 | 95.2 | 100 | 95.2 | 1.000 | .29–3.45 | 1.000 |
| Support from | .1265 | ||||||
| Professional | |||||||
| Family/friends | 74 | 79.6 | 82 | 89.1 | |||
| Both | 18 | 19.4 | 10 | 10.9 | |||
| Financial support | |||||||
| Available | 91 | 86.7 | 104 | 99.1 | 0.071 | .009–.54 | .0108 |
| Support from | 1.0000 | ||||||
| Professional | |||||||
| Family/friends | 74 | 92.5 | 85 | 91.4 | |||
| Both | 6 | 7.5 | 8 | 8.6 | |||
| Information | |||||||
| Available | 97 | 92.4 | 103 | 98.1 | 0.250 | .05–1.18 | .0795 |
| Support from | .0131 | ||||||
| Professional | 19 | 22.1 | 5 | 6.3 | |||
| Family/friends | 24 | 27.9 | 30 | 38.0 | |||
| Both | 43 | 50.0 | 44 | 55.7 | |||
Abbreviation: CI, confidence interval.
∗ ”Support from” variable has missing values.
† Fisher exact test for P value (small cell sizes, n<10).
‡ Value <5 not reported.
Discussion
Results from this study provide insight into the utilization of and satisfaction with some health services among women living with a TBI 5 to 12 years postinjury. We found that (1) our sample of W-TBI visited a family physician more frequently and were more likely to access community-based health care services than the matched women without TBI; (2) quality of and satisfaction with care from family physician and maternity/conception services were reported high by most of the women, whereas community-based services were rated lower; (3) more W-TBI reported barriers to receiving care than women without TBI, particularly financial and structural barriers, and structural barriers were most common for all women; and (4) emotional/mental health problems and lack of support services were the main areas that W-TBI experienced barriers. We focus our discussion on barriers to receiving care and satisfaction with services used.
Use of and satisfaction with health care services
We found that W-TBI in our sample were twice as likely to visit a family physician very frequently (ie, more than once per year). In Canada, family physicians largely serve as gatekeepers to specialized services, which could have influenced visit rates; W-TBI were almost 5 times as likely to use community-based health care services than women without TBI. Once services were accessed, most W-TBI reported high satisfaction with care and rated perceived quality of care as good to excellent. Consumer ratings of satisfaction with services and quality of care have grown in importance for health care providers and governments over the past few decades as rubrics of quality assurance and accountability, as a measure of treatment or health outcomes,
46
, 47
, 48
and reflecting, too, a turn toward patient-centered or consumer-based care. Despite the ubiquitous use of satisfaction surveys, the definition and hence the measurement of satisfaction continues to present a considerable challenge in the health care field, including in rehabilitation.47
, 48
, 49
, 50
As Haldeman51
states, among the vast literature on patient satisfaction, satisfaction rates are invariably high across a broad range of services and treatments. Our findings fall neatly within this trend: most participants, both with and without TBI, indicated high satisfaction with the way care was provided, and reported quality of care as excellent. The meaning, value, and measurement of patient satisfaction, and its relationship to quality of care provided, require critical attention in order to advance the best possible rehabilitation services.Barriers to receiving timely needed services
Women with and without TBI reported that they faced barriers to accessing services, but differently. Structural barriers such as transportation and government-run social services were most commonly reported for both groups of women, as has been found in other studies.
52
, 53
, 54
Financial barriers, such as cost of services, were found to significantly impact access to health care services for W-TBI, but not for women in the control group; a change in work status after injury likely impacted household income among the W-TBI. Financial difficulties are frequently identified as a barrier to the utilization of health care services,23
, 24
which is often a problem in health care systems where private insurance is the main source of health care coverage.43
, Statistics Canada. Joint Canada/United States Survey of Health: findings and public-used microdata file. Cat. #82M0022XIE. Ottawa: Statistics Canada, 2004. Available at: http://www.statcan.gc.ca/pub/82m0022x/82m0022x2003001-eng.htm. Accessed February 2, 2015.
55
Although our study was completed in Canada where hospital and physician visits are publicly funded, financial barriers to accessing other health services not covered by public funds, such as longer-term therapy, home nursing, or personal support, were still identified.Some participants might have the benefit of supplemental financial support from auto insurance if the injury resulted from a motor vehicle collision. However, institutionalized inequities can also result in financial difficulties and an inability to access services, perhaps because of lower wages or lack of disability benefits.
56
, 57
, 58
Institutional, structural, or systemic inequity is any discrimination that is longstanding and deeply entrenched to the extent that it is normalized and justified.59
Gender inequity in the workforce is one such barrier. Even though gender wage gaps are closing in many countries, women universally receive less pay than men for the same job,, 61
and are less likely to attain prestigious positions, despite equal education, experience, and progressive hiring practices.62
, 63
Barriers are built into occupational structures as well. Precarious work arrangements, including temporary and casual work, are replacing stable, long-term employment opportunities as the norm in the labor market.64
While this shift has profound effects for all people engaged in paid labor, its impact is greatest on those who have historically been devalued in the labor market because of racialized or immigration status, ability, gender, and particularly on those with intersecting identities.65
Women are also more likely to have interrupted employment or reduced pay in order to raise children. Since receipt of disability benefits is proportionate to one's income throughout the working life, these work-related inequities are generally more likely to place women at a disadvantage. Our findings could also reflect the structure of disability benefits such as guidelines determining eligibility and duration of services provided. These factors are not often captured in the literature that quantifies the number of men and women returning to work after TBI.66
, 67
W-TBI had problems accessing care for emotional/mental health problems. We are unable to determine whether the barrier was from a lack of services, finances, or other sources. However, this situation is not unique to the participants in this study. Difficulty accessing services by men and women with dual diagnoses of TBI and mental health conditions has been identified in previous studies
31
and has considerable implications for health service policy. Addressing the difficulty accessing needed supports to mitigate long-term emotional/mental health problems is an area for future investigation.Study strengths
Unique aspects of this study are the focus on women's health, collection of information many years postinjury, and reporting on services specific to women (eg, gynecologic); however, the sample size was small for this group (n=16). Including age-matched pairs of premenopausal women allowed collection of information on obstetric services as well as primary and community care services. Considering how systemic gendered inequities might affect women's access to and use of services is another strength of this study.
Study limitations
This study has several limitations. First, there were no significant differences between the groups concerning the reported quality of and satisfaction with care provided through community-based health care services. Although we asked about a variety of community-based services, only obstetrician/gynecologist and family physician/midwife services were examined thoroughly. Second, most of our sample comprised young to middle-aged adult women of European descent, limiting generalizability across the lifespan and across cultural backgrounds. Third, only 44% of eligible W-TBI participated in the study, so selection bias could impact the generalizability of study results. Since we did not obtain consent to review the medical charts of those who declined to participate, it is difficult to determine how participants differed from nonparticipants; however, since the same eligibility criteria were used to identify all possible participants, there are several similarities between those who consented and those who did not (eg, gender, defined age range, injury severity). A strength of our study is that we used a control group matched by age, education, and geographic location. Moreover, the influence of consent bias is still debated, in part because differences of characteristics among responding and nonresponding eligible participants do not always provide enough information to unequivocally determine bias, and medical record data itself could introduce bias.
68
, 69
, 70
We expect that respondents for this study were generally of a higher socioeconomic status, indicative of selection bias.70
Since recruitment of women for the control group was carried out by a third party, we do not have information on data collection such as contact and acceptance rates, or on any unreported health conditions among the control group. Fourth, we recognize that physicians in Canada work within a publicly funded health care system, and thus results may not be generalizable to private health care systems; however, access to many community-based services are often dependent on an individual's personal resources. Lastly, our measures of satisfaction were brief, and we did not include perspectives of formal and informal caregivers who frequently navigate the health care system on behalf of the person with brain injury.Implications for future research
Our study suggests directions for future research. First, researchers need to examine how systemic barriers, such as social location (eg, gender, socioeconomic status, race/ethnicity) and policies that perpetuate inequalities inherent in societal norms, impact the attainment of services.
71
, 72
, 73
Such analysis can go beyond identifying the availability or quality of any existing services to examine if and why these services are not being used, and to plan for improved policies and appropriate services. Second, further research is required to define and develop constructs of patient satisfaction and quality of care, and to understand their meaning and value for patients, health care providers, and policymakers—and how and where these constructs intersect across stakeholder groups—in order to create effective measurement tools. Development of satisfaction measurements should also consider contextual factors that might influence responses, such as power relations between patients and service providers based on social location including gender, regional availability of services and care, and differences in priorities of patients, service providers, and other stakeholders.Conclusions
To our knowledge, our study is the first quantitative study addressing long-term health care service outcomes among W-TBI. Financial and structural barriers to accessing care when needed continue to be a problem many years postinjury. We propose that more research be directed toward understanding the implications of TBI as a chronic disabling condition in order to better understand the health care needs and to plan for suitable, equitable, and accessible community-based services. Additionally, awareness of institutionalized inequities needs to be considered for development of effective policies and programs. Reports of patient satisfaction and perceived quality of care must be critically evaluated and viewed with awareness that such measures may be flawed.
Supplier
- a.Statistical Analysis System version 9.2; SAS Institute.
Acknowledgments
We thank our collaborators and the administrative staff who provided support at the participating sites: Toronto Rehabilitation Institute–University Health Network, Sunnybrook Health Sciences Centre, St. Michael's Hospital, Bridgepoint Health, Hamilton General Hospital–Hamilton Health Sciences, Chedoke Hospital–Hamilton Health Sciences, Thunder Bay Regional Health Sciences Centre, and Brain Injury Services of Northern Ontario. We thank Wayne Khuu, BSc (Honors), for support with statistical analysis and H. Jane Warren, MBA, for providing valuable feedback on an earlier version of this paper.
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Article Info
Publication History
Published online: February 20, 2015
Footnotes
Supported by the Canadian Institutes of Health Research (CIHR) (grant no. 200903MOP); the Toronto Rehabilitation Institute–University Health Network (UHN); a grant from the Ministry of Health and Long Term Care to the Toronto Rehabilitation Institute-UHN; a CIHR Fellowship Award and CIHR Strategic Training Fellowship in Health Care, Technology and Place (award no. FRN: STP 53911); a Canadian Institutes of Health Research Strategic Team Grant in Applied Injury Research (grant no. TIR-103946); the Ontario Neurotrauma Foundation; the Saunderson Family Chair at the Toronto Rehabilitation Institute-UHN; and a Canadian Institutes of Health Research Research Chair in Gender, Work and Health (grant no. CGW-126580) from the Institute of Gender and Health.
Publication of this article was supported by the American Congress of Rehabilitation Medicine.
Disclosures: none.
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© 2016 American Congress of Rehabilitation Medicine. Published by Elsevier Inc. All rights reserved.
