Abstract
Significant research exists demonstrating the challenges faced by informal family caregivers as they care for their loved ones. How caregivers react to this experience, especially in the case of a terminal illness, is less understood. This study explores the reactions of hospice caregivers to their caregiving experience prior to enrollment in hospice and identifies potential stressors associated with those reactions. Results found anxiety to be a significant predictor in the reaction of caregivers to their caregiving experience upon hospice enrollment.
Keywords: hospice, caregiving, caregiver reaction assessment
A significant body of research has found that caregiving precipitates adverse health effects for the caregiver and negatively impacts morbidity and mortality.1–5 Negative impacts include anxiety, depression, challenges in social relationships, and physical symptoms.6–10 For those caregiving for hospice patients, with a life expectancy of less than 6 months, the burdens can be even greater. Among older informal caregivers (ICGs), the emotional distress of the expected loss of a loved one, the physical demands of caregiving, and the biological vulnerability of older age combine to increase the risk of health problems and early death.5,11 The emotional needs of individuals caring for dying persons in their home receive too little attention12 and very few tested interventions offer support to ICGs.13
This research team’s current work has revealed significantly high levels of anxiety in hospice ICGs in 3 separate projects. In a combined analysis of 445 ICGs from US hospices in the Northwest, Midwest, and East, we found that 31% had moderate to severe anxiety.14 Likewise, data on 288 ICGs in the Midwest and East show that 22% had moderate or severe depression. This is consistent with a systematic literature review concluding that depression is common among hospice ICGs.15 Given these caregiving challenges, translational research for developing and evaluating interventions for ICGs is greatly needed.16
Despite the burdens and challenges associated with caregiving, there are also studies showing that caregivers receive satisfaction in assisting their loved ones. Not only can these challenging experiences lead to caregiver satisfaction, but they can also increase confidence and provide opportunities to find and share meaning through loss.17,18 Although these reactions to caregiving have been explored for individual disease conditions (dementia, cancer, stroke, etc)19,20 and specific relationship experiences (daughter, wife, and son), few studies have looked specifically at the hospice caregiving experience, across diseases and relationship status. A better understanding of the challenges and needs of caregivers when they and their loved ones are being admitted to hospice can better inform the delivery of supportive services to address their situation earlier on. A systematic investigation of biobehavioral and emotional responses to caregiving at or shortly after admission can direct the type and frequency of support services that a caregiver may need during the hospice experience.
Conceptual Model
This study is guided by a conceptual model called Assessing Caregivers for Team intervention (ACT).21 This model, modified the original by Pearlin et al,22,23 holds that interventions can mediate the impact of primary and secondary stressors on the caregiving experience. The mediation of these stressors can improve outcomes. The model is conceptual and does not suggest causal relationships between the constructs but provides direction in the selection and grouping of factors that have been associated with the hospice caregiving experience.
The Background context was conceptualized as those factors that precede or help explain the hospice caregiving experience. It was operationalized in the present study as the caregivers’ sex, age, ethnicity, race, marital status, relationship to patient, employment status, and whether or not they reside with the patient. Stress is the process by which we respond to challenges to the body or mind. Stressors were conceptualized as the response factors to this stress. They were operationalized as caregivers’ anxiety level and changes social, emotional, financial, and physical quality of life, respectively. Caregiving experience was conceptualized as how caregivers respond to these stressors. It was operationalized as caregivers’ reactions to caregiving.
The purpose of this study was to examine the caregiving reaction of family caregivers of hospice patients when they enroll in hospice and identify potential stressors associated with those reactions. It is also important to note the study does not look at caregiver outcomes at the end of the caregiving experience but rather during the experience as measures are taken upon hospice admission, not at the conclusion of hospice care. The study seeks to answer the following research questions: (1) What background factors are associated with the reaction of caregivers toward the caregiving experience as they enter into hospice care? (2) What stressors are associated with hospice caregivers’ reactions to caregiving? (3) How are background factors and stressors associated with the reaction to hospice caregiving?
Method
Study Design and Sample
This study is a part of an ongoing randomized clinical trial in 2 large hospice programs in a city in the Northwest of the United States. The clinical trial focuses on improving the quality of life for hospice caregivers (R01NR012213). The intervention trial encourages caregivers to identify challenges in caring for their loved one and teaches them a structured problem-solving approach to overcome these problems. Caregivers are randomized into either an attention control group, receiving friendly visits, or 1 of 2 intervention groups taught the problem-solving intervention (face-to-face or via video). The current study examined baseline data collected shortly after hospice enrollment from individuals in all groups.
The study examined 9 possible variables to predict reactions to the caregiving experience. Tabachnick and Fidell24 suggest applying N > 50 + 8 m, where m is the number of predictor variables, to estimate sample size for multiple regression. This equated to needed sample size of 122 cases.
Study Variables
Demographic characteristics
The following demographic characteristics were considered as background context: sex (0 = female, 1 = male), age (in years), ethnicity (0 = non-Hispanic, 1 = Hispanic), race (0 = white, 1 = not white), marital status (0 = married, 1 = not married), relationship to patient (adult child, spouse), employment status (0 = no, 1 = yes), and location of patient (0 = not with caregiver, 1 = with caregiver).
Caregiver anxiety
Caregivers’ anxiety was measured shortly after hospice enrollment using the Generalized Anxiety Disorder 7-Item (GAD-7) scale. The GAD-7 is a 7-item self-report instrument that is scaled from 0 = not at all sure to 3 = nearly every day with total scores ranging from 0 to 21; higher scores indicate higher levels of anxiety.25 Previous studies25 of the psychometric properties of the instrument have shown excellent internal reliability (α = .92). The overall internal reliability of the GAD-7 in the current study was very good (α = .88).
Caregivers’ quality of life
Caregivers’ quality of life was measured shortly after hospice enrollment with the Caregiver Quality of Life Index-Revised (CQLI-R). The CGLI-R is a 4-item self-report instrument that measures social, emotional, financial, and physical quality of life. The caregivers’ responses are scaled from 0 = lowest quality of life to 10 = highest quality of life. Previous studies of the psychometric properties of the instrument have shown acceptable internal reliability (α = .72).26 In the current study, the overall reliability of the CGLI-R was acceptable (α = .78).
Caregivers’ reactions
Caregivers’ reaction to caregiving was measured shortly following hospice enrollment with the Caregiver Reaction Assessment (CRA) questionnaire. The CRA is a 24-item self-report instrument with 5 subscales: caregiver self-esteem (7 items), lack of family support (5 items), impact of finances (3 items), impact on schedule (5 items), and impact on health (4 items). The caregiver’s responses are scaled from 1 = strongly disagree to 5 = strongly agree. Each subscale’s composite score is the mean of ratings for those items (range from 1–5).27
The original CRA did not include a total score28; however, Grov et al29 created a method for total score, and we replicated this by recoding the self-esteem subscale so that it has the same valence as the other subscales; the higher the total score, the higher the caregiver burden. Previous studies27 of the psychometric properties of the instrument have shown good internal reliability for each subscale (α = .80–.90). The overall internal reliability of the CRA in the current study was also good (α=.80).
Data Analysis
Descriptive statistics
Frequencies and percentages were calculated for sex, ethnicity, race, marital status, relationship to patient, employment status, and location of patient. Mean and standard deviation [SD] were calculated for age, anxiety, quality of life, and caregiver reactions. Histograms and boxplots were also reviewed to determine the distributions of the study variables.
Missing data
We had complete data for the sex, age, marital status, relationship to patient, employment status, location of patient, and quality-of-life variables. We had missing data for the caregiver reactions (9%), ethnicity (5%), race (<1%), and anxiety (<1%) variables. Multiple imputations through the Markov chain Monte Carlo method30 were used for missing data.
Regression diagnostics
All assumptions for regression were checked including univariate/multivariate normality, homoscedasticity of the residuals, and diagnostic testing for multicollinearity and independence of errors. We detected no multicollinearity problems across the independent variables with the mean level of the variance inflation factor ranging between 1.58 and 1.61 for the different regression models.31 We used a clustered sandwich estimator for all analyses.32
Multiple regression
The first analysis used regression to model the associations between the background and the stressor variables. The second analysis used regression to model the associations between significant background and stressor variables and caregivers’ reactions to caregiving. All statistical analyses were performed with Stata 13 for Windows.33
Results
The sample from 2 hospices in the Northwest was comprised of 204 caregivers from the first 2 years of the study. The caregivers (75% female) were mostly married (77%), white (90%), older (mean = 61, SD = 12.2), and either the adult children (55%) or spouse (31%) of the patients. Approximately half (51%) resided with their patients. Table 1 presents complete caregiver characteristics.
Table 1.
Characteristics of Caregivers.
| Characteristics | # of caregivers (n = 204) | % |
|---|---|---|
| Sex (male) | 52 | 25 |
| Ethnicity (Hispanic) | 14 | 7 |
| Race (not white) | 20 | 10 |
| Marital status (not married) | 47 | 23 |
| Relationship to patient | ||
| Adult child | 112 | 55 |
| Spouse or partner | 63 | 31 |
| Other | 29 | 14 |
| Employed (full or part time) | 92 | 45 |
| Lives with patient | 103 | 51 |
| Age, in years, mean (SD) | 61 (12.2) | |
| Anxiety, mean (SD)a | 6.7 (4.9) | |
| Quality of life, mean (SD)b | ||
| Physical | 7.2 (2.1) | |
| Social | 7.8 (2.2) | |
| Emotional | 7.3 (2.1) | |
| Financial | 6.9 (2.7) | |
| Caregiver reactions, mean (SD)c | 12.45 (2.42) |
Abbreviation: SD, standard deviation.
Higher scores indicate higher levels of anxiety.
Higher scores indicate better quality of life.
Higher scores indicate higher levels of caregiver burden.
Factors Associated With Anxiety
Age was significantly associated with a decrease of anxiety in caregivers. Caregivers’ sex, ethnicity, race, marital status, relationship to the patient, employment status, and whether or not he or she lives with the patient were not associated with caregiver anxiety.
Factors Associated With Quality of Life
Male caregivers were significantly associated with a lower social quality of life. Older caregivers were significantly associated with having higher emotional, financial, and physical quality of lives. Nonmarried caregivers were significantly associated with a lower financial quality of life. Caregivers who were spouses to the patient were significantly associated with lower emotional, financial, and physical quality of lives. Table 2 presents complete information on the associations between background factors and quality of life.
Table 2.
Background Variables Associated With Stressor Variables.
| Stressor variables | Background variables | B (SE)a | 95% CI for B | P value |
|---|---|---|---|---|
| Anxiety, n = 204 | Male | −1.22 (.87) | −2.95 to 0.5 | .16 |
| Age, years | −0.07 (.03) | −0.13 to −0.01 | .03 | |
| Hispanic | −2.78 (2.53) | −7.79 to 2.23 | .27 | |
| Not white | −0.7 (1.06) | −2.79 to 1.39 | .51 | |
| Not married | 0.03 (.97) | −1.88 to 1.95 | .51 | |
| Adult child | 1.49 (1.01) | −0.49 to 3.48 | .97 | |
| Spouse | 1.21 (1.21) | −1.17 to 3.6 | .32 | |
| Employed | 0.12 (.75) | −1.35 to 1.59 | .87 | |
| Not living with patient | 0.41 (.76) | −1.09 to 1.92 | .59 | |
| Model statistics | Adjusted R2 = .02b, F9, 191.4 = 1.53, P = .14 | |||
| Social QOL, n = 204 | Male | −.87 (.39) | −1.65 to −0.1 | .03 |
| Age, years | .02 (.02) | −0.014 to 0.05 | .31 | |
| Hispanic | .41 (.81) | −1.21 to 2.03 | .62 | |
| Not white | .13 (.54) | −0.94 to 1.2 | .82 | |
| Not married | −.75 (.44) | −1.62 to 0.12 | .09 | |
| Adult child | −.21 (.39) | −0.98 to 0.56 | .59 | |
| Spouse | −.37 (.53) | −1.42 to 0.67 | .48 | |
| Employed | .15 (.32) | −0.48 to 0.77 | .64 | |
| Not living with patient | .63 (.37) | −0.1 to 1.36 | .09 | |
| Model statistics | Adjusted R2 = .05b, F9, 190.7 = 1.77, P = .08 | |||
| Emotional QOL, n = 204 | Male | −.45 (.36) | −1.17 to 0.26 | .21 |
| Age, years | .04 (.01) | 0.01 to 0.06 | .01 | |
| Hispanic | .2 (.78) | −1.35 to 1.75 | .8 | |
| Not white | .63 (.59) | −0.54 to 1.79 | .29 | |
| Not married | −.76 (.43) | −1.6 to 0.08 | .08 | |
| Adult child | −.4 (.44) | −1.23 to 0.46 | .36 | |
| Spouse | −1.09 (.53) | −2.13 to −0.05 | .04 | |
| Employed | −.29 (.31) | −0.89 to 0.32 | .35 | |
| Not living with patient | −.27 (.93) | 4.34 to 8 | .45 | |
| Model statistics | Adjusted R2 = .03b, F9, 191.7 = 1.79, P = .07 | |||
| Financial QOL, n = 204 | Male | −.5 (.46) | −1.41 to 0.41 | .28 |
| Age, years | .04 (.02) | 0.01 to 0.07 | .01 | |
| Hispanic | .71 (1.19) | −1.88 to 3.31 | .56 | |
| Not white | −.63 (.79) | −2.18 to 0.92 | .42 | |
| Not married | −1.14 (.53) | −2.18 to −0.09 | .03 | |
| Adult child | −.2 (.53) | −1.24 to 0.84 | .71 | |
| Spouse | −1.45 (.67) | −2.77 to −0.12 | .03 | |
| Employed | −.12 (.4) | −0.91 to 0.67 | .76 | |
| Not living with patient | −.46 (1.1) | −1.4 to 0.49 | .34 | |
| Model statistics | Adjusted R2 = .04b, F9, 172.1 = 2.01, P = .04 | |||
| Physical QOL, n = 204 | Male | −.43 (.36) | −1.15 to 0.29 | .24 |
| Age, years | .02 (.01) | 0.01 to 0.05 | .03 | |
| Hispanic | −.22 (1.42) | −3.03 to 2.59 | .88 | |
| Not white | −.49 (.58) | −1.63 to 0.65 | .4 | |
| Not married | −.49 (.43) | −1.33 to 0.36 | .26 | |
| Adult child | −.23 (.31) | −1.01 to 0.54 | .55 | |
| Spouse | −1.61 (.53) | −2.65 to −0.57 | .003 | |
| Employed | −.23 (.31) | −.83 to 0.38 | .45 | |
| Not living with patient | −.23 (.84) | 5.09 to 8.42 | .55 | |
| Adjusted R2 = .04b, F9, 192 = 2.29, P = .02 |
Abbreviations: CI, confidence interval; QOL, quality of life; SE, standard error.
SE robust standard errors.
Based on Fisher z transformation.
Factors Associated With Reactions to Caregiving
Caregivers with a higher level of anxiety were significantly associated with more negative reactions to caregiving. Male caregivers with a higher social quality of life were significantly associated with less negative reactions to caregiving. Older caregivers with higher emotional, financial, and physical quality of lives, respectively, were significantly associated with less negative reactions to caregiving. Table 3 presents complete information on the associations between background and stressor factors and quality of life.
Table 3.
Background and Stressor Variables Associated With Caregiver Reactions (CRA).
| Caregiver reactions | Independent variables | B (SE)a | 95% CI for B | P value |
|---|---|---|---|---|
| Model 1, n = 204 | Anxiety | .18 (.04) | 0.09 to 0.26 | ≤.01 |
| Age, years | −.02 (.01) | 10.89 to 14.42 | .08 | |
| Model statistics | Adjusted R2 = .14b, F2, 56.9 = 14.53, P ≤ .01 | |||
| Model 2, n = 204 | Social QOL | −.59 (.08) | −0.75 to −0.43 | ≤.01 |
| Male | −1.68 (.37) | −2.42 to −0.94 | ≤.01 | |
| Model statistics | Adjusted R2 = .29b, F2, 48.1 = 30.97, P ≤. 01 | |||
| Model 3, n = 204 | Emotional QOL | −.51 (.09) | −0.7 to −0.33 | ≤.01 |
| Age, years | −.03 (.01) | −0.05 to 0.0004 | .05 | |
| Spouse | .32 (.9) | −0.39 to 1.03 | .38 | |
| Model statistics | Adjusted R2 = .2b, F3, 146.1 = 16.17, P ≤ .01 | |||
| Model 4, n = 204 | Financial QOL | −.31 (.07) | −0.45 to −0.17 | ≤.01 |
| Age, years | −.03 (.01) | −0.06 to −0.004 | .03 | |
| Not married | .04 (.48) | −0.92 to 1.01 | .93 | |
| Spouse | .34 (.36) | −0.38 to 1.06 | .35 | |
| Model statistics | Adjusted R2 = .14b, F4, 148.1 = 7.53, P ≤ .01 | |||
| Model 5, n = 204 | Physical QOL | −.51 (.09) | −0.7 to −0.33 | ≤.01 |
| Age, years | −.03 (.01) | −0.06 to −0.003 | .03 | |
| Spouse | −.03 (.36) | −0.73 to 0.68 | .94 | |
| Model statistics | Adjusted R2 = .2b, F3, 164.6 = 13.17, P ≤ .01 |
Abbreviations: CI, confidence interval; QOL, quality of life; SE, standard error.
SE robust standard errors.
Based on Fisher z transformation.
Discussion
The purpose of this study was to examine the caregiving reaction of family caregivers of hospice patients at the time of enrollment and identify potential stressors associated with those reactions. Our results suggest that older caregivers are less likely to experience anxiety in response to caregiving; that those caregivers with higher levels of anxiety are more likely to experience more negative caregiving experiences; and that older age seems to be a protective factor for retaining a higher quality of life when caregiving.
National data and demographics are not readily available for hospice caregivers; however, the National Hospice and Palliative Care Organization (NHPCO) does report annually on demographics of hospice patients. This limitation in national benchmarks for caregivers makes comparison of our sample to the overall population of hospice caregivers impossible. It is noteworthy, however, that the lack of racial diversity in our sample is also reflected in the overall hospice patient population. The NHPCO reported that 83% of hospice patients were white/caucasian in 2012. Likewise, 90% of this sample of hospice caregivers were white. Although this sample is not representative of minority populations at large, it is comparable to the minority makeup of the population receiving hospice care.
Although the mean age of caregivers in this study is 61, there was a large variance as the range was from 25 to 96 years old. As expected, the experiences gained in aging seem to be reflected in the association found with anxiety, as age appears protective against anxiety in these caregivers.14
Nearly half (45%) of the caregivers were employed, thus the lack of a significant association between employment and anxiety is surprising. Although it is unknown whether or not the employed caregivers were on family leave, it remains interesting that employment may be a protective factor against anxiety. Further research with hospice caregivers is needed.
The mean anxiety score for all caregivers was 6.7 (SD 4.9), which is considered mild. Total scores of 5, 10, and 15 represent thresholds for mild, moderate, and severe anxiety, respectively, with the GAD-7. Total scores of 10 or higher are generally considered clinically significant, signaling a need for additional evaluation and possible intervention.25 On average, anxiety was not a major problem for these caregivers and thus may not have been an effective variable to represent stressors indicated in the ACT model.
These results indicate that the components of overall quality of life (social, physical, emotional nor financial quality of life) were not predictive factors for caregiver reaction. Anxiety was a predictive factor but in an unusual direction. Our theory would suggest that lower anxiety would correlate with a more positive caregiving experience and this indeed was what we found (at least to the point of hospice enrollment).
Conclusion
This study is a unique exploration of the reaction of caregivers upon enrollment in hospice. The results suggest that practitioners assess caregiver anxiety upon enrollment to hospice as an indication of how caregivers perceive their experience. Age, gender, and quality of life are additional variables that may influence the reaction to the caregiving experience and thus are worthy of attention. Additional research to understand minority perceptions and the influence of employment on caregiving reaction are needed. Finally, additional research to explore how the hospice experience influences the initial caregiving experience is also warranted.
Acknowledgments
Funding
The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The project described was supported by Award Number R01NR012213 (PI: Demiris) from the National Institute of Nursing Research.
Footnotes
The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institute of Nursing Research or the National Institutes of Health.
Declaration of Conflicting Interests
The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
References
- 1.Andrews SC. Caregiver burden and symptom distress in people with cancer receiving hospice care. Oncol Nurs Forum. 2001;28(9):1469–1474. [PubMed] [Google Scholar]
- 2.Schulz R, Beach SR. Caregiving as a risk factor for mortality: the caregiver health effects study. JAMA. 1999;282(23):2215–2219. doi: 10.1001/jama.282.23.2215. [DOI] [PubMed] [Google Scholar]
- 3.Gaugler JE. Family involvement in residential long-term care: a synthesis and critical review. Aging Ment Health. 2005;9(2):105–118. doi: 10.1080/13607860412331310245. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 4.Sherwood PR, Given BA, Doorenbos AZ, Given CW. Forgotten voices: lessons from bereaved caregivers of persons with a brain tumor. Int J Palliat Nurs. 2004;10(2):67–75. doi: 10.12968/ijpn.2004.10.2.12460. [DOI] [PubMed] [Google Scholar]
- 5.Vedhara K, Cox NKM, Wilcock GK, et al. Chronic stress in elderly carers of dementia patients and antibody response to influenza vaccination. Lancet. 1999;353(9153):627–631. doi: 10.1016/S0140-6736(98)06098-X. [DOI] [PubMed] [Google Scholar]
- 6.McMillan SC. Interventions to facilitate family caregiving at the end of life. J Palliat Med. 2005;8(supp 1):S132–S139. doi: 10.1089/jpm.2005.8.s-132. [DOI] [PubMed] [Google Scholar]
- 7.Toseland RW, Blanchard CG, McCallion P. A problem solving intervention for caregivers of cancer patients. Soc Sci Med. 1995;40(4):517–528. doi: 10.1016/0277-9536(94)e0093-8. [DOI] [PubMed] [Google Scholar]
- 8.Haley WE, LaMonde LA, Han B, Narramore S, Schonwetter R. Family caregiving in hospice: effects on psychological and health functioning among spousal caregivers of hospice patients with lung cancer or dementia. Hosp J. 2001;15(4):1–18. doi: 10.1080/0742-969x.2000.11882959. [DOI] [PubMed] [Google Scholar]
- 9.Pinquart M, Sorensen S. Differences between caregivers and non-caregivers in psychological health and physical health: a meta-analysis. Psychol Aging. 2003;18(2):250–267. doi: 10.1037/0882-7974.18.2.250. [DOI] [PubMed] [Google Scholar]
- 10.Given CW, Stommel M, Given B, Osuch J, Kurtz ME, Kurtz JC. The influence of cancer patients’ symptoms and functional states on patients’ depression and family caregivers’ reaction and depression. Health Psychol. 1993;12(4):277–285. doi: 10.1037//0278-6133.12.4.277. [DOI] [PubMed] [Google Scholar]
- 11.Doorenbos AZ, Given B, Given CW, et al. The influence of end-of-life cancer care on caregivers. Res Nurs Health. 2007;30(3):270–281. doi: 10.1002/nur.20217. [DOI] [PubMed] [Google Scholar]
- 12.Sorensen S, Pinquart M, Duberstein P. How effective are interventions with caregivers? An updated meta-analysis. Gerontologist. 2002;42(3):356–372. doi: 10.1093/geront/42.3.356. [DOI] [PubMed] [Google Scholar]
- 13.National Institutes of Health. National institutes of health state-of-the science conference statement. J Pallat Med. 2005;8(supp 1):8. [Google Scholar]
- 14.Washington K, Demiris G, Pike K, Kruse R, Parker Oliver D. Symptoms of anxiety among informal hospice caregivers. Palliat Support Care. 2014:1–7. doi: 10.1017/S1478951513001193. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 15.Parker Oliver D, Albright D, Washington K, Gage A, Mooney M. Hospice caregiver depression: the evidence surrounding the greatest pain of all. J Soc Work End Life Palliat Care. 2013;9(4):256–271. doi: 10.1080/15524256.2013.846891. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 16.Aziz NM, Miller J, Curtis JR. Palliative and end-of-life care research: embracing new opportunities. Nurs Outlook. 2012;60(6):384–390. doi: 10.1016/j.outlook.2012.08.006. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 17.Herbert R, Schultz R. Caregiving at the end of life. J Pallat Med. 2006;9(5):1174–1187. doi: 10.1089/jpm.2006.9.1174. [DOI] [PubMed] [Google Scholar]
- 18.Wong WKT, Ussher J. Bereaved informal cancer carers making sense of their palliative care experiences at home. Health Soc Care Community. 2009;17(3):274–282. doi: 10.1111/j.1365-2524.2008.00828.x. [DOI] [PubMed] [Google Scholar]
- 19.Pakenham K. The positive impact of multiple sclerosis (MS) on carers: associations between carer benefit finding and positive and negative adjustment domains. Disabil Rehabil. 2005;27(17):985–997. doi: 10.1080/09638280500052583. [DOI] [PubMed] [Google Scholar]
- 20.Haley WE, Allen J, Grant J, Clay O, Perkins M, Roth D. Problems and benefits reported by stroke family caregivers: Results from a prospective epidemiological study. Stroke. 2009;40(6):2129–2133. doi: 10.1161/STROKEAHA.108.545269. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 21.Demiris G, Parker Oliver D, Wittenberg-Lyles E. Assessing caregivers for team interventions (ACT): a new paradigm for comprehensive hospice quality care. Am J Hosp Palliat Med. 2009;26(2):128–134. doi: 10.1177/1049909108328697. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 22.Meyers JL, Gray LN. The relationships between family primary caregiver characteristics and satisfaction with hospice care, quality of life, and burden. Oncol Nurs Forum. 2001;28(1):73–82. [PubMed] [Google Scholar]
- 23.Pearlin LI, Mullan JT, Semple SJ, Skaff MM. Caregiving and the stress process: an overview of concepts and their measures. Gerontologist. 1990;30(5):583–594. doi: 10.1093/geront/30.5.583. [DOI] [PubMed] [Google Scholar]
- 24.Tabachnick BG, Fidell LS. Using Multivariate Statistics. 5 ed. Upper Saddle Ridge, NJ: Pearson Allyn & Bacon; 2001. [Google Scholar]
- 25.Spitzer RL, Kroenke K, Williams W, Lowe B. A brief measure for assessing generalized anxiety disorder. Arch Intern Med. 2006;166(10):1092–1097. doi: 10.1001/archinte.166.10.1092. [DOI] [PubMed] [Google Scholar]
- 26.Courtney K, Demiris G, Parker Oliver D, Porock D. Conversion of the caregiver quality of life index to an interview instrument. Eur J Cancer Care. 2005;14(5):463–464. doi: 10.1111/j.1365-2354.2005.00612.x. [DOI] [PubMed] [Google Scholar]
- 27.Given B, Wyatt G, Given C, et al. Burden and depression among caregivers of patients with cancer at the end of life. Oncol Nurs Forum. 2004;31(6):1105–1117. doi: 10.1188/04.ONF.1105-1117. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 28.Given CW, Given B, Stommel M, Collins C, King S, Franklin S. The caregiver reaction assessment (CRA) for caregivers to persons with chronic physical and mental impairments. Res Nurs Health. 1992;15(4):271–283. doi: 10.1002/nur.4770150406. [DOI] [PubMed] [Google Scholar]
- 29.Grov EK, Fossa SD, Tonnessen A, Dahl AA. The caregiver reaction assessment: psychometrics, and temporal stability in primary caregivers of Norwegian cancer patients in late palliative phase. Psychooncology. 2006;15(6):517–527. doi: 10.1002/pon.987. [DOI] [PubMed] [Google Scholar]
- 30.Schafer J. Analysis of Incomplete Multivariate Data. Boca Raton, FL: Chapman & Hall; 1997. [Google Scholar]
- 31.Cohen J, Cohen P, West SG, Aiken LS. Applied Multiple Regression/Correlation Analyses for the Behavorial Sciences. 3rd ed. Mahwah, NJ: Lawrence Erlbaum Associates; 2003. [Google Scholar]
- 32.Williams RL. A note on robust variance estimation for cluster-correlated data. Biometrics. 2000;56(2):645–646. doi: 10.1111/j.0006-341x.2000.00645.x. [DOI] [PubMed] [Google Scholar]
- 33.StataCorp. Stat statistical software. 13 ed. College Station, Texas: StatCorp LP; 2013. [Google Scholar]